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Skin Deep A Report Card on Access to Dermatological Care and Treatment in Canada – 2012 Quebec CSPA member organizations The CSPA is a non-profit organization made up of patient members and affiliated patient organizations: About Face Alberta Society of Melanoma Alliance québécoise du psoriasis Basal Cell Carcinoma Nevus Syndrome Life Support Network British Columbia Lymphedema Association Canadian Alopecia Areata Foundation Canadian Burn Survivors Community Canadian Pemphigus and Pemphigoid Foundation Cutaneous Lymphoma Foundation DEBRA Canada, Epidermolysis Bullosa Eczema Society of Canada Hidradenitis Suppurativa Foundation Scleroderma Association of British Columbia CSPA Board of Directors Allan Stordy, Alberta Barbara-Anne Hodge, Manitoba Andrew Gosse, Newfoundland Judy Bacsu, Alberta Preet Bhogal, Nova Scotia Paul Francois Bourgault, Québec Sandy Burton, Ontario Sylvia Garand, Québec Brooks Harvey, Alberta Charles Jago, British Columbia Jim Makris, Ontario Tanny Nadon, Alberta Karen Shipman, Ontario Contact information Canadian Skin Patient Alliance 2446 Bank Street, Suite 383 Ottawa, Ontario K1V 1A8 Christine Janus, Executive Director phone: 613-422-4265 fax: 877 294-1525 cell: 613-884-3101 CSPA general office toll free 1-877-505-CSPA (2772) www.canadianskin.ca © Copyright 2012 All rights reserved. Published by Canadian Skin Patient Alliance Printed in Canada. e02QC02 This document is excerpted from the complete Report Card, which can be found online at www.canadianskin.ca. Imagine what it’s like to live every day uncomfortable in your own skin, not just because of the physical discomfort, pain or itchiness, but ashamed and guarded to have others see your exposed skin, afraid that people might shy away or be uncomfortable around you. This is a reality for a great many Canadians. Some skin patients look different and are open about their disease, but most hide it well, so skin disease becomes something that is “in the closet.” Although it may be thought that skin conditions are “just skin deep,” they can have a huge impact on quality of life for skin patients as well as their families. This report represents just a snapshot of some of the issues that affect many patients and has taken considerable time to put together. While we’ve tried to cover many of the issues, we already know we’ve missed some. Whether it’s funding coverage for wigs for alopecia patients, or access to treatments for hyperhidrosis, or special drug category coverage, given that there are well over 3,000 skin diseases and approximately one third of the population of Canada grapples with a skin condition, disease or trauma at any given time, there is much work ahead. This is a beginning. This Report Card was born out of a need for us—the patients—to understand where the gaps are in access to care across the country. We have a sense that there are problems, but this report sets out a platform from which we, the CSPA, can advocate for patients where it is needed most. This is the first time Canadian skin patients have organized as a collective group to try to effect change. This report is also offered as a tool to the many others who have a stake in the care of Canadian skin patients—the doctors, nurses, medical associations and pharmaceutical companies across the country—to help make their conversations with governments more focused and productive. I would like to acknowledge the hard work of Christine Clarke, the past Chair of the CSPA’s Advocacy Committee, and the driver of this project, who spent countless volunteer hours in development and final preparation of this report. Thanks to Susan Turner as the primary writer and researcher and to Christine Janus who provided considerable input and oversight on behalf of the CSPA. We also extend very special thanks to Dr. Evert Tuyp and Dr. Harvey Lui, the members of the CSPA’s Medical Advisory Board, the CSPA Board of Directors and the representatives of other affiliated patient organizations who all stand with us in our goals to improve the situation for skin patients in Canada. I thank you for taking the time to read this report, and we look forward to working with the different levels of government to make progress in treatment and care for all skin patients in Canada. Whether you live in Kinkora, PEI, or Victoria, BC, we hope that by working with other stakeholders and decision-makers in Canada’s complex health system, we can together use this Report Card to improve your access to dermatological care and treatment. Allan Stordy, CSPA President Summary of the CSPA’s position 1. Skin patients should have access to a dermatological care within an acceptable wait time regardless of where they live in Canada. We believe that Canadians seeking treatment for medical skin disorders should not have to wait longer than five weeks to see a dermatologist—the national median wait time reported in 2001. While we recognize that it is not possible for all dermatology services to be available within commuting distance of all Canadians, we believe that phototherapy—the mainstay of treatment for many medical skin conditions—should be available to every Canadian, either in a clinic or as an insured service at home for those Canadians who cannot access a clinic. 2. Medical procedures should be insured services for all patients with a medical skin disorder. Treatments for diseases such as vitiligo, a pigmentation disorder with serious social and psychological impacts, need to be covered by the public health system. 3. All drugs that are considered the standard of care should be funded without restrictions. Dermatologists need access to the broadest range of alternative medications. A medication that works for one patient may not work for another. In many skin diseases, the body can build up a tolerance to a “tried and true” medication over time and thus new ones need to be available. Also, some skin patients are particularly susceptible to side effects of drugs. Since these diseases are chronic, a patient’s quality of life can be affected dramatically by drugs that are poorly tolerated, less effective or that require the patient to go to unreasonable lengths to administer. 4. Patients with rare skin diseases should have access to a medication or medical procedure for which there is reasonable evidence of efficacy, regardless of its regulatory approval status. By definition, the number of patients with a rare disease is too small to allow for the same levels of scientific evidence that are achievable for treatments for more common diseases. In practice, this means that Health Canada will have insufficient evidence to prove that a treatment is effective and safe in patients with rare diseases, according to its normal standards. Drug review committees will also lack a high standard of evidence on which to base a funding decision. In these situations, a lower level of evidence should be accepted for decisions concerning the clinical application, funding and availability of promising treatments for rare skin diseases. ii Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Contents Summary of the CSPA’s position......................................................................................................................... ii Executive Summary Issues..............................................................................................................................................................xix Recommendations.........................................................................................................................................xx Improve access to dermatological care...............................................................................................xx Improve access to medical procedures...............................................................................................xxi Improve access to medications...........................................................................................................xxi Introduction About the Canadian Skin Patient Alliance (CSPA).................................................................................. xxiii Prevalence of skin diseases in Canada...................................................................................................... xxiii Burden of skin diseases...............................................................................................................................xxiv Reasonable access to care and treatment..................................................................................................xxvii About the Report Card............................................................................................................................ xxviii How performance was graded................................................................................................................. xxviii National Issues and Actions..........................................................................................................................................CA-2 Where are the gaps?..................................................................................................................................CA-2 Who is at risk?...........................................................................................................................................CA-3 What the CSPA is doing............................................................................................................................CA-3 Detailed Tables...............................................................................................................................................CA-4 1. Access to dermatological care...............................................................................................................CA-4 How does Canada’s performance rate?..........................................................................................CA-4 Long wait times..........................................................................................................................CA-4 Low and steadily declining numbers of dermatologists..........................................................CA-7 Lack of access in rural and remote areas...................................................................................CA-7 Need for more dermatology nurses..........................................................................................CA-9 Need for more Mohs surgeons................................................................................................CA-10 How have governments responded?.............................................................................................CA-10 Training new dermatologists...................................................................................................CA-11 Remuneration..........................................................................................................................CA-11 Outreach to rural and remote communities..........................................................................CA-12 CSPA recommendations to improve access to dermatological care...........................................CA-13 2. Access to medical procedures.............................................................................................................CA-14 What is the situation today?.........................................................................................................CA-14 Phototherapy............................................................................................................................CA-14 Access to vitiligo treatments....................................................................................................CA-17 Access to specialized treatments..............................................................................................CA-17 CSPA recommendations to improve access to medical procedures...........................................CA-18 3. Access to medications.........................................................................................................................CA-18 Number of standard-of-care drugs funded............................................................................CA-19 Restricted access to standard drugs.........................................................................................CA-20 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 iii Contents Funding status of medications to treat skin diseases.............................................................CA-21 Lack of policies for rare skin diseases.....................................................................................CA-25 Drug review delays...................................................................................................................CA-26 CSPA recommendations to improve access to medications.......................................................CA-27 Quebec Key issues.................................................................................................................................................. QC-1 Recommendations................................................................................................................................... QC-1 Detailed Tables.............................................................................................................................................. QC-3 1. Access to dermatological care ............................................................................................................. QC-3 What is the situation today?.......................................................................................................... QC-3 Long wait times......................................................................................................................... QC-3 Large but falling numbers of dermatologists.......................................................................... QC-5 Lack of access in rural and remote areas.................................................................................. QC-6 Need for more dermatology nurses......................................................................................... QC-6 How has the Government of Quebec responded?........................................................................ QC-7 Training new dermatologists.................................................................................................... QC-7 Remuneration........................................................................................................................... QC-8 Outreach to rural and remote communities........................................................................... QC-8 CSPA recommendations to improve access to dermatological care in Quebec.......................... QC-9 2. Access to medical procedures ............................................................................................................. QC-9 What is the situation today?........................................................................................................ QC-10 Phototherapy........................................................................................................................... QC-10 CSPA recommendations to improve access to medical procedures in Quebec........................ QC-11 3. Access to medications ....................................................................................................................... QC-11 What is the situation today?........................................................................................................ QC-12 Number of standard-of-care drugs funded........................................................................... QC-12 Restricted access to newer medications................................................................................. QC-12 Funding status of medications to treat skin diseases in Quebec............................................... QC-13 Lack of policy for rare skin diseases....................................................................................... QC-18 CSPA recommendations to improve access to medications in Quebec.................................... QC-19 Appendix 1 Information Sources ...................................................................................................................................A-1 Dermatologist fees.............................................................................................................................A-1 Medications........................................................................................................................................A-2 Appendix 2 Methodologies for assessing access to dermatological care.......................................................................A-3 Benchmarks for access to dermatological care.................................................................................A-3 Rationale.............................................................................................................................................A-3 Measuring supply...............................................................................................................................A-4 Calculation of FTEs......................................................................................................................A-4 Measuring demand............................................................................................................................A-5 iv Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Contents Table and Figure List Introduction Table 1: The CSPA Report Card Scoring Method...........................................................................................xxx National Table 1: How is Canada performing?............................................................................................................CA-1 Table 2: Overall performance ratings on access to dermatological care......................................................CA-4 Table 3: Median wait times in weeks for routine consultation....................................................................CA-5 Figure 1: Lack of Accessibility of Dermatologists.........................................................................................CA-6 Figure 2: Median Wait Times for Dermatologist Consultation...................................................................CA-7 Figure 3: Distribution of Dermatologists in Canada...................................................................................CA-8 Figure 4: Urban concentration of dermatology practice.............................................................................CA-9 Table 4a: Ratios of dermatology nurses to dermatologists........................................................................CA-10 Table 4b: Ratio of dermatology nurses to dermatologists, by province....................................................CA-10 Figure 5: Dermatologists in Training..........................................................................................................CA-11 Table 5: Comparison of dermatologist fees by province and territory.....................................................CA-12 Table 6: Performance ratings on access to medical procedures.................................................................CA-14 Table 7: Phototherapy clinics in Canada (estimated, 2006).......................................................................CA-15 Figure 6: Locations of Phototherapy Clinics in Canada 2006...................................................................CA-16 Table 8: Professional fees for a narrow-band UVB phototherapy session by jurisdiction.......................CA-16 Table 9: PUVA phototherapy as an insured service for vitiligo patients...................................................CA-17 Table 10: Availability of specialized dermatology services by province....................................................CA-18 Table 11: Performance ratings on access to medications...........................................................................CA-19 Table 12: Funding status by province of medications to treat psoriasis....................................................CA-21 Table 13: Comparison of Special Authorization criteria for biologic medications for psoriasis.............CA-22 Table 14: Funding status by province of medications to treat eczema......................................................CA-22 Table 15: Funding status by province of medications to treat and prevent viral skin infections............CA-23 Table 16: Funding status by province of medications to treat skin cancers..............................................CA-24 Table 17: Funding status by province of medications to treat rare skin diseases......................................CA-25 Quebec Table 1: Performance of Quebec on access to dermatological care ........................................................... QC-3 Figure 1: Wait Times for Dermatologist Consultation in Quebec............................................................. QC-4 Figure 2: Lack of Accessibility of Dermatologists in Quebec...................................................................... QC-5 Table 2: Ratios of dermatology nurses to dermatologists........................................................................... QC-6 Figure 4: Dermatologists in Training in Quebec ........................................................................................ QC-7 Table 3: Relative remuneration for dermatologist office visits................................................................... QC-8 Table 4: Performance of Quebec on access to medical procedures.......................................................... QC-10 Table 5: Performance of Quebec on access to medications...................................................................... QC-11 Table 6: Funding status of medications to treat psoriasis in Quebec....................................................... QC-13 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 v Contents Table 7: Funding status of medications to treat eczema in Quebec......................................................... QC-15 Table 8: Funding status of medications to treat viral skin infections in Quebec..................................... QC-16 Table 9: Funding status of medications to treat skin cancers in Quebec................................................. QC-17 Table 10: Funding status of medications to treat rare skin diseases in Quebec....................................... QC-18 Appendix 1 Table 1: Dermatologist fees...............................................................................................................................A-1 Table 2: Formulary sources...............................................................................................................................A-2 Appendix 2 Table 1: Benchmarks for access to dermatological care..................................................................................A-3 Figure 1: Factors affecting supply and demand for medical dermatology services.......................................A-4 Table 2: Forecasting the growth of demand for dermatology services...........................................................A-5 vi Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Executive Summary Many millions of Canadians suffer from skin disorders. At any time, approximately half of the population is grappling with a skin condition, disease or trauma. Some of these are life-threatening, while others reduce the quality of life for patients and their families. Although there is often no permanent cure for these diseases or traumas, there are many effective forms of treatment that improve a person’s ability to live a normal, healthy life. This CSPA Report Card provides an assessment of the performance of three primary areas of the Canadian health-care system: 1. Access to dermatological care; 2. Access to medical procedures; 3. Access to medications. The CSPA Report Card covers five categories of common skin conditions and two rare diseases. Since there are over 3,000 different skin diseases, we selected a representative few in order to reveal the problems that are experienced by most patients needing dermatological care in Canada. Overall, Canada receives a failing grade for access to dermatological medicines, care and treatments. While some provinces deserve credit for investing in new specialized treatments for skin diseases, the basic needs of most of Canada’s skin patients are not being met. Issues The CSPA Report Card reveals the following key findings: • First, patients wait too long for routine appointments—on average, at least twice as long as the benchmark median wait time of five weeks. Fifty per cent of patients wait longer than 12 weeks following referral from their family doctor. • Importantly, the availability of a primary form of treatment for many skin diseases—phototherapy—is severely lacking and increasingly difficult to obtain. Consequently, provincial governments are paying higher costs in other forms of treatment because of these shortages. • Furthermore, not all medications deemed to be the standard of care are covered by government formularies. Access to newer medications, which could provide patients with improved tolerability and quality of life, are usually restricted. They can also sometimes require patients to undergo months or years of treatment with drugs Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 xix Executive Summary having poorer effectiveness and/or high levels of side effects. Too often, dermatologists know that a better treatment exists that would greatly improve their patients’ conditions and quality of life, but they cannot prescribe them because they are not covered under provincial formularies. • Patients with rare skin diseases do not have access to promising treatments. Canada lacks an “orphan drug” policy to promote research into new medications. In addition, most jurisdictions that do not have special exemptions and emergency drug release programs for other rare diseases currently do not apply them to most rare dermatological diseases. There is great disparity across the country regarding the availability of dermatological care and treatment and the quality of services in each jurisdiction. The CSPA Report Card provides details about the status of dermatological care provided in each jurisdiction. Little is being done to improve access to dermatological care, either by increasing access for Canadians living outside urban centres, by supporting the use of other health professionals such as dermatology nurses to work alongside dermatologists or by expanding the number of training places for dermatologists. Likewise, while access to specialized treatments is increasing, the disappearance of basic services such as phototherapy and the cumbersome and sometimes unreasonable restrictions on newer medications remain problematic. Recommendations Responsibility for addressing the issues outlined in this report is shared between federal, provincial and territorial governments; medical colleges, schools and professional associations; dermatologists; and patients. The CSPA invites all stakeholders to be part of a concerted effort to improve access to dermatological care and treatment for all Canadians. The CSPA calls on the federal, provincial and territorial governments to take the lead regarding the following recommendations, in collaboration with dermatology professionals and patients. Further details about each recommendation are found in the relevant sections of the report. Improve access to dermatological care 1. Reduce wait time for routine consultation by a dermatologist to five weeks within the next three years. Options for achieving this goal may include: • Creation of a plan to achieve a minimum ratio of one full-time medical dermatologist for every 65,000 people; • Examining systems of remuneration for medical dermatology services; • Creating billing codes for the services of trained dermatology nurses. xx Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Executive Summary 2. Require that basic dermatological care is provided within reasonable commuting distance for 90 per cent of residents by dermatologists and/or dermatology nurses under the supervision of dermatologists in all provinces and territories. Options for achieving this goal may include: • A roundtable discussion in 2012 initiated by the Federal Ministry of Health to remove the factors limiting the use of teledermatology services in rural and remote regions; • Creation of a plan to expand outreach visits by dermatologists or dermatology nurses under the supervision of a dermatologist. 3. Prepare and plan to meet current and future demands for dermatological services based on expected dermatologist retirements, population growth and the rising incidence of skin disease. Options for achieving this goal may include: • Expanding the number of dermatology training places; • Ensuring that systems of remuneration support the recruitment and retention of medical dermatologists. • Ensuring that systems of remuneration support the recruitment and retention of trained dermatology nurses to work under the supervision of dermatologists. Improve access to medical procedures 1. Ensure that every skin patient has access to phototherapy by providing a clinic in every publicly funded hospital and by including home phototherapy as an insured service for patients who cannot access a clinic. 2. Fund medical procedures for vitiligo as for other dermatological conditions. 3. Provide specialized dermatological procedures, such as Mohs surgery, plasmapheresis and photopheresis, within reasonable travelling distance for patients. Improve access to medications To all provincial, territorial and federal drug programs: 1. Fund all drugs deemed to be the standard of care without restrictions and without a time-consuming application process, allowing physicians, together with their patients, to make the decision about which therapies are appropriate. 2. Fund anti-viral medications for herpes simplex infections, and HPV vaccinations for boys. 3. Move swiftly to provide coverage for new skin cancer drugs currently in the regulatory approval pipeline, in order to save the lives of Canadians. 4. Develop policies for rare diseases and provide coverage for promising and effective treatments for skin patients with rare or orphan diseases. For jurisdictions where orphan drug policies exist or where there are special exemptions and emergency drug release programs, expand the existing access to cover rare dermatological diseases. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 xxi Executive Summary Rare skin diseases can profoundly affect lives and need to be considered serious and therefore warrant these considerations. To the federal government: 1. Take a leadership role and develop and implement a national “orphan or rare disease” policy to encourage the introduction of new drugs to treat rare skin diseases, as well as set into place mechanisms so that Canadians, wherever they live, can gain access to treatments that help them. xxii Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Introduction Many millions of Canadians suffer from skin disorders—some of which are life-threatening, while others severely reduce the quality of life for patients and their families. Although there is often no permanent cure for these diseases, there are many effective forms of treatment that improve a person’s ability to live a normal, healthy life. Yet, there are deficiencies and disparities regarding access to dermatological care and treatment across the country. Some effective treatments are not funded by governments, and not all Canadians have access to the same level of care. Long wait times and a shortage of dermatologists threaten the ability of patients to receive the medical attention they need. This CSPA Report Card was written to measure and expose how well skin patients are able to access a reasonable level of dermatological care and treatment. Its findings will serve as a foundation for the advocacy work of the Canadian Skin Patient Alliance, its affiliates and other stakeholders. As the CSPA Report Card is updated in future years, Canadians will be able to track our progress in improving patients’ access to effective care and treatment for skin diseases. About the Canadian Skin Patient Alliance (CSPA) The Canadian Skin Patient Alliance (CSPA) is an umbrella organization representing the collective interests of its member groups and the millions of Canadians who grapple with dermatological conditions—diseases of the skin, hair and nails. Founded in 2007, the CSPA provides education, information and an online support community, as well as opportunities for Canadian skin patients to create and join local support groups. Advocacy is one of the CSPA’s primary missions. As such, the CSPA Report Card presents a set of facts to draw attention to the urgent needs of skin patients and pinpoints those areas that must change. The Report Card enables advocates to discuss with their governments and other stakeholders how improvements can be made that will help Canadian skin patients and their families to participate fully in their home, community and working lives. Prevalence of skin diseases in Canada Clinical experts have identified more than 3,000 types of skin disorders—some quite rare, such as cutaneous T-cell lymphoma, and others quite common, like psoriasis, which Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 xxiii Introduction affects one in 50 Canadians.1 It is estimated that over half of the Canadian population suffers from a skin condition,2 many of whom are young and will continue to experience some level of disability for decades. As it would be impossible to address every issue associated with access to care and treatment for each skin disease, we have selected five common and two rare diseases for the Report Card as representative of the array of skin disorders and issues related to their treatment. These representative disorders are: • Psoriasis: an autoimmune disease causing mild, moderate or severe skin lesions; • Eczema (also called atopic dermatitis): red, scaly, intensely itchy skin patches aggravated by contact with irritants; • Vitiligo: patchy depigmentation of the skin due to localized depletion of melanin; • Skin cancers: malignant melanoma, basal cell carcinoma and squamous cell carcinoma; • Viral skin infections: herpes simplex (cold sores, genital warts), herpes zoster (shingles) and human papilloma virus (ano-genital warts); • Rare skin disorders: cutaneous T-cell lymphoma (a type of cancer), and pemphigus (an autoimmune disease causing severe blistering of skin and mucous membranes). Burden of skin diseases Research shows that the burden of skin diseases is high in Canada—both in terms of health outcomes and in social and economic costs. The impact of skin disease across Canada is immense—not only from a economic point of view but also from the psychological impact on patients and their families. Many Canadians at some time in their lives experience some type of skin disease. A report such as this highlighting the lack of access to dermatologists and medical treatment and many newer and investigational drugs is so important to effecting change. — Dr. Denise Wexler, President of the Canadian Dermatology Association Psoriasis affects approximately one in 50 Canadians, and its treatment costs more than $30 million annually.3 In addition to its economic impact, the disorder also exacts 1. Canadian Guidelines for the Management of Plaque Psoriasis, June 2009. 2. Rea JN et al. Skin disease in Lambeth. A community study of prevalence and use of medical care. Br. J. Prevent. Soc. Med. 30,107-114 (1976). 3. Ontario Health Technology Assessment Series 2009;9(27). xxiv Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Introduction a heavy emotional and social toll. Psoriasis patients suffer from a variety of psychosocial burdens, including stigmatization, stress, depression, and other psychosocial co-morbidities,4 even suicidal ideation.5 In Canada, the rate of associated medical and psychological problems is reported to be up to four-fold higher than in the general population. One-third of Canadians with psoriasis describe their disease as a substantial problem in their daily life.6 Furthermore, patients report reduced income and increased unemployment at levels that increase with psoriasis severity.7 New treatments have been found to improve patients’ productivity,8 yet these are often difficult to obtain for reasons that are discussed in this report. Atopic dermatitis affects up to one in five children9, and the disorder can have a substantial impact on the quality of life of patients and their families. Approximately 80 per cent of children with atopic dermatitis experience sleep disturbance, leading to daytime behavioural problems and difficulties in performing daily activities. Atopic dermatitis has been estimated to cost the Canadian economy $1.4 billion each year.10 Vitiligo affects approximately one per cent of the population globally and is particularly a problem for pigmented races. Approximately three-quarters of vitiligo sufferers find their appearance moderately to severely intolerable.11 Melanoma can progress rapidly and is often fatal if caught too late. In 2011, the Canadian Cancer Society estimated there would be 74,100 new cases of non-melanoma skin cancer (basal cell and squamous cell carcinomas), 5,500 new cases of melanoma and 950 deaths due to melanoma.12 Patients with a recent diagnosis of melanoma exhibit the same high levels of psychological distress reported by other cancer patients.13 Skin cancers are estimated to cost the Canadian economy over $500 million annually.14 Many skin conditions are caused by a virus. Three strains of herpes virus—herpes simplex viruses (HSV-1 and HSV-2), and herpes zoster virus—are estimated to affect 4. Kimball AB et al. The psychosocial burden of psoriasis. Am J Clin Dermatol 2005;6:383-92. 5. Gupta MA et al. Suicidal ideation in psoriasis. Int J Dermatol 1993;32:188-90. 6. Lynde CW et al. The burden of psoriasis in Canada: insights from the psoriasis knowledge IN Canada (SKIN) survey. J Cutan Med Surg 2009;13(5):235-52. 7. Mahler R et al. The burden of psoriasis and barriers to satisfactory care: results from a Canadian patient survey. Cutan Med Surg 2009;13(6):283-93. 8. Reich K et al. Infliximab treatment improves productivity among patients with moderate-to-severe psoriasis. Eur J Dermatol 2007;17(5):381-6. 9. Su JC, Kemp AS, Varigos GA, Nolan TM. Atopic eczema: its impact on the family and financial cost. Arch. Dis. Child. 1997;76:159-162. 10.Barbeau M and Lalonde H. Burden of Atopic dermatitis in Canada. International Journal of Dermatology 2006;45:31-36. 11.Salzer BA and Schallreuter KU. Investigation of the personality structure in patients with vitiligo and a possible association with impaired catecholamine metabolism. Dermatology 1995;190:109-115. 12.Canadian Cancer Society. Canadian Cancer Statistics 2011. 13.Fawzy F et al. A structured psychiatric intervention for cancer patients. I. Changes over time in methods of coping and affective disturbance. Arch. Gen. Psychiatr. 1990;47:720-725. 14.Canadian Partnership Against Cancer. Economic Burden of Skin Cancer in Canada: Current and Projected. February 2010. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 xxv Introduction two-thirds of the Canadian population. Cold sores on the lips and around the mouth are the most common manifestation of HSV-1 infection, whereas genital sores are associated with HSV-2. Herpes zoster virus, more commonly known as “shingles,” affects another seven per cent of the population. In addition, human papilloma virus (HPV) affects more than one in six Canadians. Skin diseases caused by HPV, such as ano-genital warts, have been estimated to cost $418 million in the U.S. and so can be expected to cost $40 million or more in Canada.15 In addition, there is a link between HPV and cervical cancer—once again an instance where a skin disease is implicated in wider and deadlier outcomes. The impact of rare skin disease on the lives of patients is extraordinary. In addition to the stigma of having a skin disease, the inability to access medications, treatments or care can be devastating. Skin diseases are not just superficial. The huge psychological and social burden of skin disease cannot be ignored. While we have not dealt with them specifically here, there are several issues that governments must acknowledge and address. Treatment for skin disease must look beyond the physical and address the often more devastating psychological issues that cause patients to hide, to isolate themselves, to feel untouchable—like the lepers of biblical times. Three examples of actions that would signal a willingness to understand and help: • Governments should provide ready and easy access to a variety of psychological services and support programs for those with visible skin diseases. More teens with acne, for example, suffer from depression than do their unblemished peers. Statistically more likely to commit suicide, they would benefit greatly from support groups and/or counselling. • In recent studies, psoriasis patients had a 39 per cent increase in the risk of a clinical diagnosis of depression, a 31 per cent increase in the risk of anxiety and a 44 per cent increase in the risk of suicidality.16 Patients with a great many skin diseases carry with them the burden of looking different and feeling uncomfortable in their own skin. An acceptance that counselling is part of an accepted treatment paradigm for visible skin conditions, diseases and traumas (like burns) would surely help. • Governments should cover wigs for patients with alopecia areata—these are covered for chemotherapy patients but, inexplicably, not for people who permanently lose their hair through a skin disease. 15.Hu D, Goldie S. The economic burden of noncervical human papillomavirus disease in the United States. Am J Obstet Gynecol 2008;198:500.e1-500.e7. 16.Gupta MA, 1998. xxvi Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Introduction Reasonable access to care and treatment Canadians believe they enjoy one of the best health-care systems in the world. The Canada Health Act guarantees all Canadians reasonable access to medically necessary services. Surely patients with medical skin conditions should also expect to have reasonable access to the care and treatment they need. Some governments across Canada have taken the first steps to improve the health outcomes of skin patients by: • Promoting skin cancer prevention through legislation and awareness programs; • Providing funding for some of the effective medications and medical procedures needed; • Planning to meet current and future needs for dermatology services. However, many challenges remain. For example: • Most skin patients must wait several months for a routine appointment to see a dermatologist; • In most regions, long wait times reflect a dire shortage of dermatologists and dermatology nurses; • Canadians who live outside urban centres have little or no access to dermatological care; • Many jurisdictions appear not to have planned to replace the 20 per cent of dermatologists who are expected to retire in the next five years; • There is a critical and growing lack of phototherapy clinics, resulting in patients going without effective treatments and placing an unnecessary burden on drug budgets for expensive biological therapies, which are the only alternative; • New medications are being introduced every year that are more effective but usually more costly than existing therapies. Public drug programs are slow to respond to cover new drugs and often impose cumbersome and sometimes unreasonable restrictions or deny funding; • The situation is especially acute for patients with rare skin diseases. Few provinces have policies to fund drug treatments for specific patients with rare diseases for which the level of evidence will never be sufficient to meet the criteria for drug funding approvals. Even though some provinces do have policies or exemption procedures in place, it is difficult or impossible to get coverage for rare skin diseases because skin disease is not typically viewed as being “important” or “urgent” or “lifethreatening.” The CSPA recognizes that governments cannot afford to fund all available treatments, nor can the numbers of dermatologists be increased quickly with ease. The CSPA’s position on these issues reflects the premise of the Canada Health Act which promises Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 xxvii Introduction “reasonable access to health services without financial or other barriers17.” This Report Card defines reasonable access for patients against standards of care determined by accepted health-care benchmarks. About the Report Card This is the first issue of the CSPA Report Card. It was developed to give voice to the rising frustration of the millions of Canadians with skin disorders about the unacceptably low and, in many areas, deteriorating availability of dermatological care and treatment they receive through the publicly funded health system. The 2012 CSPA Report Card assesses only public drug programs. Although many Canadians are covered by private insurance for the costs of drugs, and sometimes medical equipment and travel expenses, there are thousands of different plans, making assessment of them beyond the present scope of the CSPA’s research capabilities. Details about the information, sources and methodology used to produce the CSPA Report Card are provided in the appendices. How performance was graded Performance grades were decided by the CSPA based on our positions, on clinical practice guidelines and, where the latter do not exist, on historical precedent and on the judgement of a panel of dermatologists about what constitutes an acceptable standard of care. At this time, there are no published benchmarks that define the point at which patients experience harm from lack of access to dermatological care and treatment. The Report Card uses benchmarks obtained from published, historical, calculated or best-practice sources wherever possible. These benchmarks are described below and explained in further detail in each section of the Report Card. 17.Canada Health Act. Available online: http://laws.justice.gc.ca/Search/Search.aspx?txtS3archA11=ACCE SS&txtT1tl3=%22Canada+Health+Act%22&h1ts0n1y=0&ddC0nt3ntTyp3=Acts. xxviii Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Introduction The following method was used to establish overall grades for each jurisdiction the CSPA assessed: 1. Performance measures within each section were assigned the following weights: Rating Score Excel: 5 points Pass: 4 points Needs Improvement: 2 points Fail: 0 points 2. The ratio of total points for each section to total available points was then calculated. 3. The overall grade was assigned and colour-coded based on these ranges: Rating Score Excel > 75% Pass 51–75% Needs improvement 35–50% Fail < 35% Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 xxix Introduction The following scoring method was used: Table 1: The CSPA Report Card Scoring Method Performance Measured: Measurement Performance Benchmark Scoring Range Access to dermatological care Wait time for non-urgent consultation 5 weeks (2001 national median wait time) • • • • Excel: < 5 weeks Pass: 5-6 weeks Needs improvement: 7-12 weeks Fail: > 12 weeks Increase in number of new full-time dermatologists 6.2% annual increase (Replacement rate for retiring dermatologists plus increased demand due to rising incidence of skin disease) • • • • Excel: > 6% Pass: 4-6% Needs improvement: 2-3% Fail: < 2% Ratio of trained dermatology nurses to dermatologists 0.5 dermatology nurses per dermatologist (national best practice) • • • • Excel: > 0.5 Pass: 0.4-0.5 Needs improvement: 0.2-0.3 Fail: < 0.2 Number of phototherapy facilities per population Ratio of one phototherapy facility per 65,000 population (Royal College of Physicians & Surgeons) • • • • Excel: < 65,000 Pass: 65,000 to 70,000 Needs improvement: 70,000 to 150,000 Fail: > 150,000 Access to phototherapy facilities Percentage of population having access to a phototherapy facility within commuting distance (including insured home phototherapy) • • • • Excel: > 95% Pass: 85-95% Needs improvement: 65-84% Fail: < 65% Procedures for vitiligo Phototherapy is an insured service and is accessible. • Excel: Phototherapy is an insured service and is accessible by > 95% of population. • Pass: Phototherapy is an insured service and is accessible by 85-95% of population. • Needs improvement: Phototherapy is a restricted service and/or is accessible by 6584% of population. • Fail: Phototherapy is not an insured service and/or is accessible by < 65% of population. Specialized procedures Availability in the province of: • Mohs surgery • Plasmapheresis • Photopheresis • Excel: All 3 procedures available in the province. • Pass: All 3 available • Needs improvement: 1-2 available • Fail: None available Number of drugs for common skin diseases on formulary All drugs deemed the standard • Pass: 90% or more drugs on formulary of care are on formulary • Needs improvement: 60-89% (lower “pass” rate reflects time • Fail: < 60% needed to review new drugs.) Access to medical procedures Access to medications xxx Restrictions on use Number of funded drugs of drugs having no restrictions (lower “pass” rate reflects restrictions for reasons of patient safety) • • • • Excel: > 90% unrestricted Pass: 80-89% Needs improvement: 60-74% Fail: < 60% Policy on drugs for Policy in place and applies to rare diseases skin patients • Pass: Policy in place and applies to skin patients • Needs improvement: Policy in place but does not apply to skin patients • Fail: No policy in place Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 National National Canada receives a failing grade overall for access to dermatological care and treatment. While some provinces deserve some credit for investing in new specialized treatments for skin diseases, the basic needs of skin patients for timely access to appropriate services are not being met. There is great variability among jurisdictions in the quality of services provided. The overall performance assessment shown in Table 1, below, masks some positive highlights and glaring deficiencies that are apparent only on viewing the individual provincial reports. Table 1: How is Canada performing? Access to Dermatological Care Access to Medical Procedures Access to Medications Canada Fail Fail Fail British Columbia Fail Needs improvement Fail Alberta Fail Fail Fail Saskatchewan Fail Fail Fail Needs improvement Fail Fail Ontario Fail Needs improvement Needs improvement Quebec Fail Fail Needs improvement Needs improvement Fail Fail Prince Edward Island Fail Fail Fail Nova Scotia Fail Fail Fail Newfoundland and Labrador Fail Fail Fail Yukon Fail Fail Fail Northwest Territories Fail Fail Fail Nunavut Fail Fail Fail Non-Insured Health Benefits* N/A N/A Fail Manitoba New Brunswick National *N on-Insured Health Benefits is a federal program that covers the costs of medications, medical supplies and medical travel, within certain restrictions, for registered First Nations and Inuit beneficiaries. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 CA-1 National Issues and Actions Where are the gaps? There is a looming crisis in access to dermatological care and treatment for the many millions of Canadians who rely on these services. Canada’s publicly funded health-care system, while it offers substantial benefits, falls short in each of the three areas where performance was measured: 1. Access to dermatological care: • Wait times for a routine appointment with a dermatologist is perhaps the most glaring gap. Half of patients wait at least 12 weeks on referral from their family doctor. In some areas of the country, the median wait time is 23 weeks; • Support for trained dermatology nurses is low to non-existent, yet these allied health professionals could play an important role in reducing wait times; • The number of new dermatologists is not increasing fast enough to meet future demands for dermatology services. 2. Access to medical procedures: • Phototherapy, which is a mainstay of treatment for many common skin diseases, is being eliminated by many hospitals and dermatology clinics due to budget constraints. Skin patients without access to phototherapy services must purchase home phototherapy units at their own expense or take costly medications (often at the expense of governments) as the only alternative treatment; • Phototherapy and other treatments for vitiligo, a pigmentation disorder with high psychological, social and economic impacts, are not funded in many provinces. 3. Access to medications: • Not all medications deemed the standard of care are covered by government formularies; • Access to newer medications, which offer patients improved tolerability and quality of life, are restricted and require patients to undergo months or years of treatment with drugs having high levels of side effects and poorer effectiveness; • Medications and treatments for melanoma and skin cancers are either not covered or only covered with restrictions for far too many Canadians. Promising new treatments for melanoma are in the regulatory pipeline and will need to be covered expeditiously to save lives; • Patients with rare skin diseases lack access to promising treatments. Canada does not have a national “orphan disease” policy to encourage the introduction of new CA-2 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 National drugs for rare diseases, and virtually all provinces lack policies or programs that fund drugs that are effective for Canadians with rare skin diseases. Who is at risk? While all Canadians with skin conditions are affected by these gaps, a few groups of patients are at particular risk. For example: • Skin patients requiring phototherapy treatments are increasingly at risk because of phototherapy clinic closures and the need to travel long distances to receive treatments several times a week; • Atlantic Canadians and residents of Saskatchewan have much longer wait times and less access to medical procedures. Residents of the three territories are entirely dependent on outreach services from neighbouring provinces; • Canadians living outside urban areas are increasingly vulnerable to shortages of dermatologists and to the expenses of travelling to receive necessary treatments; • Canadians without private insurance do not have the benefit of prompt and broad access to medication that is generally provided by employer-sponsored drug plans. What the CSPA is doing The Canadian Skin Patient Alliance has been advocating for improvements to the healthcare system since 2007. Our advocacy campaigns have focused on the shortage of dermatologists in Canada as well as on access to newer and effective treatments and medications. National The CSPA also contributes funds for research about skin diseases, which will help to build an evidence base to determine the most effective treatments. Through meetings, newsletters and publication of our quarterly magazine we educate Canadians, make patients aware of their treatment options and raise awareness of access issues. We continue to lobby governments for access to specific new treatments for the patients we represent. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 CA-3 National Detailed Tables The tables in this section compare access to dermatological care and treatment in each province and territory, and by the federal Non-Insured Health Benefits (NIHB) program.1 1. Access to dermatological care Access to dermatological care was assessed by measuring three indicators: wait times, increases in the number of dermatologists over the past five years, and the ratio of dermatology nurses to dermatologists. Although median wait times for a non-urgent consultation is the most important measure from the patient’s perspective, additional information may help to inform policy directions. For this reason, we also calculated the number of full-time medical dermatologists in each jurisdiction and examined steps taken by governments to improve access, such as expanding training positions and providing outreach services. How does Canada’s performance rate? Canada falls far short of the CSPA’s benchmarks on access to dermatological care. Table 2: Overall performance ratings on access to dermatological care CDN BC AB SK MB ON QC NB PE NS NL YT NT NU Fail Fail Fail Fail NI Fail Fail NI Fail Fail Fail Fail Fail Fail Legend: NI = needs improvement Long wait times Canadians wait far too long for a consultation after they have been referred by their family doctor. The benchmark for wait times is five weeks for an initial, non-urgent consultation with a dermatologist. This measure was chosen to reflect the need for patients with debilitating conditions to obtain timely treatment that may allow them to return to their daily lives without detrimental effects to their health, work, psychological state and social functioning. This benchmark is based on the national median wait time reported by the Canadian Dermatology Association (CDA) Workforce Survey in 2001. An independent survey, conducted in February-March 2011, and sponsored by the CSPA, showed that patients wait an unacceptably long time for an initial appointment. 1. The Non-Insured Health Benefits program covers registered First Nations and Inuit. CA-4 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 National The median wait time was 12 weeks for any Canadian skin patient. Furthermore, onefourth of patients must wait 23 weeks, or nearly six months, to be seen. As Table 3, below, reveals, none of the provinces came close to reaching the recommended five-week benchmark: Table 3: Median wait times in weeks for routine consultation BenchMark CDN BC AB SK MB ON QC NB PE NS NL Median wait time (weeks) for routine consultation 5 12 10 8 14* 14* 12 18 23* n/a 23* 23* Performance Grade Pass NI NI NI Fail Fail NI Fail Fail Fail Fail * Wait times data for Saskatchewan, Manitoba and the Atlantic provinces were combined due to the small number of responses in each individual province. The problem of wait times may also extend to appointments to investigate a possible diagnosis of skin cancer. In a national survey conducted in 2011, the Melanoma Network of Canada reported that 55 per cent of patients had to wait longer than the accepted benchmark of two weeks2 to be seen by a dermatologist.3 National Many physicians concur with the CSPA’s findings that there is a lack of access to dermatologists. In fact, Canadian dermatologists report that they are nearly twice as difficult to access compared to other specialists. In the 2010 National Physician Survey,4 doctors were asked to rate their own accessibility to their patients. Figure 1 shows that 38 per cent of them said their accessibility was either “poor” or “fair.” As the figure reveals, in all provinces surveyed, dermatologists were considerably more difficult to access. 2. Suneja T, Smith ED, Chen GJ, et al; Waiting times to see a dermatologist are perceived as too long by dermatologists. Arch Dermatol. 2005;137:1303-1307. 3. Samuel Hetz, in partnership with Melanoma Network Canada. Survey conducted January – March 2011. 4. 2010 National Physician Survey. The College of Family Physicians of Canada, Canadian Medical Association, The Royal College of Physicians and Surgeons of Canada. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 CA-5 National A greater percentage of dermatologists report they are difficult to see compared with other specialists. 60% 50% 40% 30% 20% 10% All Specialists Dermatologists tia No va S co ec eb Qu rio ta On ba M an ito ta Al be r B. C . 0% Ca na da Percentage of doctors rating their access as poor or fair Figure 1: Lack Lack of of Accessibility Accessibility of of Dermatologists Dermatologists Source: National Physican Survey 2010 To make matters worse, wait times are steadily increasing, as shown in Figure 2, which is a comparison of data from three surveys conducted over the past 10 years against the CSPA recommended benchmark wait time of five weeks. The Canadian Dermatology Association (CDA) 2001 Workforce Survey reported a national median wait time of five weeks for a routine dermatologist appointment. In 2006, the CDA reported that wait times had doubled to 10 weeks. The 2011 CSPA survey showed that wait times had further increased to 12 weeks. Although caution should be used in comparing data from different sources, the trend toward worsening wait times is clear. (Note: This negative trend may actually be understated, as the CDA survey examined time to the third-next appointment, whereas the CSPA survey measured time to the next available appointment.) CA-6 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 National Figure 2:Median MedianWait WaitTimes TimesforforDermatologist DermatologistConsultation Consultation 14 12 Weeks 10 8 6 Benchmark 4 2 0 2001 (CDA) 2006 (CDA) 2011 (CSPA) Low and steadily declining numbers of dermatologists One reason for long wait times may be the shortage of dermatologists. The benchmark ratio of one dermatologist for every 65,000 people was chosen based on the recommendations from the Royal College of Physicians and Surgeons of Canada.5 In seven of 10 provinces, the number of full-time dermatologists is insufficient to achieve the benchmark. In fact, in Saskatchewan, one dermatologist provides services to over 250,000 people. In addition to the current shortage of dermatologists in most of Canada, a major concern is that the number of dermatologists being trained will not keep up with expected retirements and increased demand for services in the future. The average age of dermatologists in Canada is 55, and more than one in five is already over age 65.6 The number of full-time-equivalent dermatologists needs to increase at an annual rate of 6.2 per cent in order to replace retirees and to meet future demands for services due to growth in the population and rising incidence of skin disease (see Appendix 2). In the five-year period ending in 2008-09, the number of full-time dermatologists had risen at a rate of only 0.8 per cent annually7—far from meeting the required rate of growth. Lack of access in rural and remote areas National The shortage of dermatologists is even more acute in rural and remote areas of Canada. As shown in Figure 3 below, the concentration of dermatologists is largely in southern, urban centres. No dermatologists are based in the territories or in the northern parts of most provinces. 5. Royal College of Physicians and Surgeons of Canada. National Specialty Physician Review. July 1988. 6. Canadian Medical Association 2010. 7. National Physician Database 2004-05 to 2008-09. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 CA-7 National Figure 3: Distribution of Dermatologists in Canada One dot represents one physician (N = 510). Dots may overlap for the same geographic location. Source: Geographic Distribution of Physicians in Canada: Beyond How Many and Where. Canadian Institute for Health Information (CIHI) 2005. Although many dermatologists provide outreach services to smaller communities, Figure 4 shows the discrepancy between citizens residing outside urban centres and the level of outreach provided. According to the 2006 census, 20 per cent of Canadians reside in a rural or remote area; however, according to the Canadian Dermatology Association’s 2006 Workforce Survey, only eight per cent of dermatologists’ time is spent practising outside urban areas. This means that a Canadian living in a rural or remote community is less than half as likely to be able to receive care from a dermatologist than is someone living in an urban area. CA-8 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 National Urban concentration of of dermatology practice Figure 4: Urban concentration dermatology practice 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% Dermatologist time Canadian population 0% Urban Rural + remote Sources: CDA Workforce Survey 2006, Statistics Canada Need for more dermatology nurses Long wait times for dermatological care could be alleviated by employing other health professionals to work alongside dermatologists. Trained dermatology nurses are being used effectively in other countries to assist busy dermatologists by screening patients and overseeing their treatments. National Tables 4a and 4b, below, reveals that, on average, one dermatology nurse is employed for every five dermatologists in Canada. In the United Kingdom, there are four dermatology nurses or dermatology nurse practitioners for every five dermatologists, reflecting a team-based approached to providing care.8 In the U.S., 30 per cent of dermatologists reported that they used a dermatology nurse or a dermatology nurse practitioner in their practices.9 The CSPA’s recommended benchmark ratio of 0.5 is based upon the best practice ratio found in Nova Scotia, an achievable goal for many other jurisdictions. 8. An audit of the provision of dermatology services in secondary care in the United Kingdom with a focus on the care of people with psoriasis. British Association of Dermatologists and the Royal College of Physicians and Surgeons 2008. 9. Resneck, JS Jr et al. Who else is providing care in dermatology practices? Trends in the use of nonphysician clinicians. Journal of the American Academy of Dermatology 2008;58(2)211-216. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 CA-9 National Table 4a: Ratios of dermatology nurses to dermatologists Benchmark Canada U.K. U.S. 0.5 0.2 0.8 0.3 Nova Scotia leads the country in its employment of dermatology nurses but Quebec and Newfoundland and Labrador lag. Prince Edward Island currently has no dermatologist and so may not be able to support a dermatology nurse position. Table 4b: Ratio of dermatology nurses to dermatologists, by province BC AB SK MB ON QC NB PE NS NL 0.2 0.3 0.3 0.2 0.3 0.01 0.2 0.0 0.5 0.1 Source: Canadian Dermatology Nurses Association, 2010 This limited analysis suggests that Canada may not have capitalized on an opportunity to make more efficient use of dermatologists’ time through the utilization of trained dermatology nurses. Billing codes that encourage dermatologists to hire dermatology nurses with specialized training and skills to assist in the treatment of many skin conditions will help to address long wait times. Need for more Mohs surgeons Dermatologists trained in Mohs micrographic techniques are able to perform more complex but minimally invasive surgeries that almost completely remove various types of skin lesions, including cancers. According to the Canadian Association of Mohs Surgeons, there are currently 19 accredited Mohs surgeons in Canada. Long wait lists appear to indicate that more Mohs surgeons are needed. Of the16 Mohs surgeons who responded to a request for information, half indicated that their wait list was four months or longer for most procedures and two to three weeks for skin cancers.10 Those contacted stated that the number of Mohs surgeons needs to double across the country. How have governments responded? Some provincial and territorial governments have taken steps to improve access to dermatological care. Strategies include increasing the number of training places, negotiating dermatologist fees that encourage the practice of medical dermatology within their jurisdiction, and/or improving outreach services. However, these actions generally have fallen short of what is needed to achieve the level of access that Canadian skin patients need and deserve. 10.Personal communication from Dr. Evert Tuyp, dermatologist, British Columbia. CA-10 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 National Training new dermatologists Training new dermatologists is essential to replace retirees and to meet the growing demand for services. There are currently 104 dermatologists in training (excluding visa students) of whom only 12 are expected to enter into practice in 2011 (including visa students).11 This addition amounts to only 2.5 per cent of the current full-time medical dermatologists, whereas a growth rate of 6.2 per cent (or a minimum of 32 new entries per year) is needed. In fact, the current rate of new entries is insufficient even to replace the expected numbers of retirees. On the upside, the number of dermatology training places has been increasing steadily over the past five years. Since dermatology training is a five-year program, the numbers of new dermatologists will be expected to rise beginning in 2012-13. Nevertheless, even higher numbers of dermatology training places are needed to meet future demands for services. Dermatologists in Training Figure 5: Dermatologists in Training 120 100 80 60 40 In training (ministry funded only) 20 Estimated practice entries (all) 0 2006-07 2007-08 2008-09 2009-10 2010-11 Source: Canadian Post-MD Educational Registry The CSPA recommends that a minimum goal of 35 new practice entries should be set until all provinces reach the recommended benchmark of one full-time medical dermatologist for every 65,000 people. Filling these new places should not be a problem since there is strong interest in dermatology among medical school graduates. In 2011, only 59 per cent of first-year medical residents wishing to specialize in dermatology were able to be placed in training programs.12 National Remuneration A potential cause of the shortage of dermatologists (including Mohs surgeons) may be related to remuneration for medical services. Jurisdictions with comparatively low fees 11.Canadian Post-MD Educational Registry (CAPER) 2010-11. 12.Canadian Resident Matching Service, 2011. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 CA-11 National are at risk of diminishing numbers of dermatologists because those specialists may locate elsewhere and/or devote increased time to cosmetic services. Although fees are not the only, or even the most important, reason for a dermatologist to practise in a certain area, an unrealistically low level of remuneration may limit the amount of time a dermatologist can afford to spend delivering insured services, which may dissuade medical students from entering the specialty. Table 5, below, depicts the fee payments for consultations and repeat visits used as indicators of overall remuneration. Provinces and territories whose fees were 20 per cent greater or less than the interprovincial average are highlighted. The comparison reveals that British Columbia may be at risk of losing dermatologists, whereas New Brunswick and the territories appear better positioned to recruit and retain dermatologists. Table 5: Comparison of dermatologist fees by province and territory Appointment Type Prov. Avg. BC AB SK MB ON QC Fee per comprehensive consultation $78.99 $59.66 $69.03 $78.20 $64.45 $70.25 $62.20 Fee per repeat office visit $29.77 $22.55 $39.68 $30.20 $28.30 $21.40 $25.80 Appointment Type Prov. Avg. NB PE NS NL YT NT Fee per comprehensive consultation $78.99 $102.95 $85.00 $119.60 $78.51 $108.30 $116.70 Fee per repeat office visit $29.77 $37.70 $33.00 $29.90 $29.16 $75.50 $63.65 Legend: 20% or more above provincial average within +/– 20% > 20% below Outreach to rural and remote communities None of the provinces has a requirement to maintain a minimum level of dermatology services no matter where its citizens reside. For many of the 20 per cent of Canadians who live outside an urban centre, outreach services are the only way they can access dermatological care. As mentioned earlier, dermatologists report that only eight per cent of their time is spent practising outside urban centres—much less than is needed. Given that there is already a shortage of dermatologists in eight out of 10 provinces even in the urban centres, the problem in rural areas becomes more dire. CA-12 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 National Teledermatology is one option to increase services in rural and remote areas. Assessments of the utility of teledermatology generally recommend that this technology be used to supplement rather than replace in-person care.13 14 Provincial governments and dermatologists have used this technology to varying degrees. All provinces (except Prince Edward Island) have the available equipment and (except Quebec) include teledermatology consultations in their fee schedules. Yet some dermatologists interviewed for the CSPA Report Card said that it is seldom used in practice. The CDA Workforce Survey reported that in 2006 only one in 12 dermatologists used teledermatology, and only for an average of three hours per week. Overall, this amounted to only one-tenth of one per cent of all dermatologists’ time, suggesting that there is potential to expand these services. Dermatologists in Edmonton have developed their own program, which is growing in use by family physicians and which might serve as a model in other centres. Although dermatologists would like to make more use of the technology, liability issues have been mentioned by some as a concern where physical examination by a trained specialist plays a key role in diagnosis. Remuneration and ease of use of the technology are other issues. Until these issues are resolved it is unlikely that this important tool can achieve its potential to improve the quality of care and reduce costs of outreach services. CSPA recommendations to improve access to dermatological care The CSPA calls on federal, provincial and territorial governments to take the lead and to work in collaboration with dermatology professionals and patients to do the following: 1. Reduce wait times for routine dermatology consultations to five weeks within the next three years. Strategies may include: • Developing a plan to achieve a minimum ratio of one full-time medical dermatologist per 65,000 population; • Supporting the hiring of trained dermatology nurses by dermatologists by creating billing codes for their services. 2. Require that basic dermatological care is provided within reasonable commuting distance for 90 per cent of residents by dermatologists or dermatology nurses under the supervision of a physician. Options for achieving this goal may include: National • In 2012, the Ministry of Health to initiate a roundtable discussion that examines and finds solutions for the limiting factors associated with the use of teledermatology services in rural and remote regions; 13.Ndegwa, S et al. Teledermatology services: rapid review of diagnostic, clinical management, and economic outcomes. Canadian Agency for Drugs and Technology in Health (CADTH). Technology Report. Issue 135 October 2010. 14.Louise Gagnon. Remote viewing: teledermatology increases access to specialists in Canada. Dermatology Times August 1, 2008. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 CA-13 National • Create a plan to expand outreach visits by dermatologists or dermatology nurses under the supervision of a dermatologist; • Prepare to meet future demands for dermatological services, based on expected dermatologist retirements, population growth and rising incidences of skin diseases; • Expand the number of dermatology training places by 35 to achieve an overall annual increase in numbers of dermatologists of 6.2 per cent; • Ensure that systems of remuneration support the recruitment and retention of medical dermatologists. 2. Access to medical procedures Access to medical procedures was assessed according to whether they are funded and available within reasonable distance from where Canadians live. Canada falls far short of the CSPA’s benchmarks for providing access to dermatological procedures, primarily because of the low and declining availability of phototherapy facilities across Canada. Table 6: Performance ratings on access to medical procedures CDN BC AB SK MB ON QC NB PE NS NL YT NT NU Fail NI Fail Fail Fail NI Fail Fail Fail Fail Fail Fail Fail Fail Legend: NI = needs improvement Access to medical procedures was assessed according to the following factors: What is the situation today? Phototherapy Phototherapy, including psoralen/ultraviolet A (PUVA) and broad- and narrow-band UVB treatments, is a widely used, effective and non-invasive treatment for several skin conditions, including psoriasis, acne, eczema, vitiligo, itchy skin, lichen planus, granuloma annulare and certain rare skin diseases. In some cases, it represents a cost-effective alternative that may also alleviate or slow the need for more expensive treatments or medications. While there is no definitive source of information about how many phototherapy clinics are operating in Canada, based on information from multiple sources it is estimated that CA-14 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 National in 2006 there were over 100 locations across the country.15 The benchmark chosen for the CSPA Report Card is one phototherapy clinic for every 65,000 people, mirroring the standard for dermatologists. Access to phototherapy was also evaluated according to how far patients must travel to receive treatment. A passing grade requires that at least 85 per cent of the population can obtain phototherapy treatments within commuting distance. Currently, all phototherapy clinics are located in urban centres, as shown in Figure 6. There are no phototherapy clinics in Prince Edward Island or in the three territories, and only one is located in Manitoba. Since treatments are required two or three times a week, it is impractical for many Canadians to travel to a phototherapy clinic. Instead, some patients could opt for home treatment; however, the cost of purchasing the equipment is not currently covered by any province or territory, nor by many private insurers. Table 7: Phototherapy clinics in Canada (estimated, 2006) British Columbia 21 New Brunswick 5 Alberta 14 Prince Edward Island 0 Saskatchewan 3 Nova Scotia 7 3 1 Newfoundland and Labrador Ontario 30 Yukon Territory 0 Quebec 29 Northwest Territories 0 Nunavut 0 National Manitoba 15.Compiled from: Canadian Dermatology Association list of dermatologists providing courtesy UVA/B treatments for travellers; Koo, M et al. Phototherapy services in Canada (poster presentation) 2006; personal communication from Bruce Elliott, President, Solarc Systems Inc., Barrie, Ontario. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 CA-15 National Figure 6: Locations of Phototherapy Clinics in Canada 2006 Moreover, patients and dermatologists have increasingly reported the closure of phototherapy clinics. Hospital-based facilities, which are funded from global budgets, have closed in some areas due to cost pressures. In these centres, phototherapy is typically provided by physiotherapy departments where most other treatments tend to be less expensive to provide. As a result of the closure of hospital units, phototherapy clinics based in dermatologists’ offices cannot keep up with demand. Many dermatologists interviewed for the CSPA Report Card commented that the fees for providing phototherapy are insufficient to cover the costs of equipment, staff and facilities. For example, the cost of a set of UVB light bulbs is $3,000 and these must be replaced every six to 12 months. Table 8, below, shows the fees paid for a narrow-band UVB phototherapy session in each province. Table 8: Professional fees for a narrow-band UVB phototherapy session by jurisdiction CA-16 BC AB SK MB ON QC NB PE NS NL $19.94 $20.42 $13.90 $27.75 $7.85 $17.40 $33.35 $20.00 $29.90 $9.60 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 National It makes little sense that phototherapy, a relatively inexpensive therapeutic option for several skin diseases, is not better supported. In situations where dermatologists cannot offer this procedure, they must often resort to prescribing treatments that have a much greater overall cost to the public health-care system. Access to vitiligo treatments Not all medically necessary dermatological procedures are funded by provincial and territorial governments. To assess performance in this area, we examined phototherapy repigmentation procedures for vitiligo, a condition in which the skin loses pigmentation in patches due to loss of melanin. Although the condition does not directly threaten long-term health outcomes, the psychosocial effects can be severe, resulting in significant social and economic impacts for patients. As shown in Table 9, below, four provinces consider this procedure to be cosmetic, rather than medically necessary, and do not fund it for vitiligo patients. In addition, although phototherapy is an insured service in the six remaining provinces, it is inaccessible to many patients due to the shortage of phototherapy units. To achieve a passing grade for access to vitiligo treatments, phototherapy must be both an insured service for vitiligo patients and accessible to at least 85 per cent of the population. Advanced treatments, such as excimer laser repigmentation, are reportedly very effective but are currently unfunded in Canada. Table 9: PUVA phototherapy as an insured service for vitiligo patients BC AB SK MB ON QC NB PE NS NL Yes No* No Yes Yes Yes No* No Yes Yes *D ermatologists interviewed for this report noted that psoralen is difficult to obtain for vitiligo patients, although it is listed as a general benefit on the provincial formulary. Access to specialized treatments The benchmark used to evaluate access to specialized treatments was the availability within the province of three services: plasmapheresis, photopheresis and Mohs surgery. National Not all provinces, and no territories, provide specialized dermatological treatments. Although plasmapheresis is available in all provinces, other procedures such as photopheresis (for the treatment of cutaneous T-cell lymphoma) are not available in six provinces or in any of the territories. Similarly, Mohs surgeons are located in only six provinces. (Dermatologists trained in Mohs micrographic techniques perform highly effective tissue sparing surgeries for the most complex skin cancers with the highest cure rates and the lowest rates of recurrence.) Patients living outside these areas must travel to receive treatment, often at their own expense. For repeated treatments, this can be very costly. Wherever possible, specialized treatments should be located within reach of skin patients, no matter where they live. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 CA-17 National Table 10: Availability of specialized dermatology services by province Treatment BC AB SK MB ON QC NB PE NS NL Mohs micrographic surgery Yes Yes No Yes Yes Yes Yes No No No Plasmapheresis Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Photopheresis Yes Yes Yes Yes Yes No No No No No CSPA recommendations to improve access to medical procedures The CSPA calls on the federal, provincial and territorial governments to take the lead, working in collaboration with dermatology professionals and patients, to: 1. Ensure that every skin patient in Canada has access to phototherapy. • Provide a phototherapy clinic in every publicly funded hospital; • Include home phototherapy as an insured service for patients who cannot access a clinic. 2. Add sufficient numbers of Mohs surgeons to achieve wait times of 28 days in keeping with the national wait times benchmark for cancer radiotherapy. Encourage the location of new Mohs surgeons to reach the maximum number of Canadians. 3. Access to medications The CSPA believes that all drugs that are considered the standard of care in the treatment of skin diseases should be covered by government drug programs without restriction. These include drugs that have received Health Canada approval as well as promising new treatments for rare skin diseases, which are very unlikely to be submitted for marketing authorization. To measure performance in this area, we examined the formulary listings of medications that are considered the standard of care for five common skin diseases. The percentage of funded drugs was measured, as well as whether they were made available with or without restrictions. In addition, we assessed the policies adopted by governments to facilitate access to medications for rare skin diseases. The following three benchmarks were used to evaluate access to medications: • Ninety per cent or more of a list of standard-of-care drugs are covered. The CSPA’s position is that 100 per cent of drugs are covered and this lower benchmark allows for the time needed by drug programs to review new drugs; CA-18 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 National • At least 80 per cent of drugs are available without restrictions. The CSPA’s position is that 100 per cent of drugs should be available without restriction. We recognize that some restrictions currently exist because of past best practice protocols; • The jurisdiction has implemented a policy on rare diseases that allows, for specific patients, funding for unapproved drugs that have been proven effective in the particular “orphan” indication. Where they exist, it is noted whether or not the exemption policies cover skin diseases. As Table 11, below, reveals, Canada falls short of the CSPA’s benchmarks on access to medications Table 11: Performance ratings on access to medications CDN BC AB SK MB ON QC NB PE NS NL YT NT NU Fail Fail Fail Fail Fail NI NI Fail Fail Fail Fail Fail Fail Fail Legend: NI = needs improvement Nationally, Canada fails to provide adequate access to medications for several reasons: 1. Not all medications considered the standard of care to treat skin conditions are funded in every jurisdiction. This is a concern for all diseases, but especially for drugs used to treat skin cancers. 2. Where newer drugs are funded, there are often cumbersome and sometimes unreasonable restrictions on their use, which pose barriers to access and waste scarce dermatologist time. 3. Canada lacks an “orphan drug” policy to encourage development of drugs for rare skin diseases, as well as provincial and territorial mechanisms or policies to fund promising medications for rare skin diseases. Number of standard-of-care drugs funded The number of standard-of-care drugs funded falls well below the benchmark of 90 per cent of standard-of-care drugs for the treatment and prevention of common skin diseases. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 National For those drugs that are not covered by the provincial formulary, unless a patient has private insurance, they must pay out of pocket. As mentioned earlier in the Report Card, skin patients are often intolerant to side effects of drugs or need alternatives when medications lose effectiveness over time. For this reason, they need access to the widest possible range of choices. To deny access to patients to medications considered to be part of the standard of care can be to deny them a life without pain, itch, disfigurement, discomfort and/or shame. To deny medications to patients with melanomas or skin cancers is unimaginable, and yet is the case for many Canadians, depending upon where they live. Each provincial and territorial section has tables that detail which standard-of-care medications are not covered for the seven conditions we cover in the Report Card. CA-19 National Restricted access to standard drugs Newer drugs, which may offer patients enhanced clinical benefit and improved quality of life, are more likely to be restricted than older drugs. (Details on the restriction criteria can be found in the provincial sections of the Report Card.) No jurisdiction comes close to meeting the benchmark of 80 per cent of unrestricted drugs. Restricted access criteria can be stressful for patients. Most jurisdictions require that a patient first try to see improvement in their skin condition on a succession of older drugs, some of which may offer fewer clinical benefits and in some cases even have toxic side effects, before coverage will be allowed for a newer medication. When dermatologists believe that the best therapeutic option for their patient is one of the newer restricted-access treatments they must make special applications to provincial drug programs showing that the patient has tried and failed several older therapies. The administrative burden imposed on already overworked dermatologists to repeatedly complete and submit these applications on behalf of their patients is very time consuming. While most dermatologists will repeatedly go to bat for their patients, it would not be inconceivable that some might not even mention the option of a more effective but restricted treatment option to a patient, simply because they either have too little time to process the paperwork, or in some provinces, no faith that an application will be accepted even if submitted. A key example is the current dilemma faced by psoriasis patients in Canada whose doctors wish to prescribe biologic medications for them. Depending on where the patient lives, even if they are covered, the dermatologist must provide evidence that the patient has tried at least two and in some jurisdictions, three different therapies that either haven’t worked for them or have had significant side effects that warranted stopping the treatment. Children or adults with eczema can lead difficult lives. Special access requirements can force those affected into regimens with super potent topical steroids before newer options are made available, and then sometimes only if other conditions are met. Metastatic melanoma moves swiftly and will claim almost 1,000 Canadians this year. It is one of the few cancers that are on the rise. In the case of medications for skin cancers, restricted access can sometimes have devastating effects. Treatment delayed is often treatment denied, especially for a disease like metastatic melanoma — Dr. James Walker, dermatologist in Ottawa Restrictions may make sense for provinces and territories trying to limit the amount of money spent on medications, but the cost on human lives of these strategies is undeniably high. When a patient is put on a medication that isn’t the right one, there can be a sense of failure or hopelessness. Surely, the decisions on which medications and treatments are best for a patient should be made by the dermatologist in consultation with the patient, and not CA-20 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 National by government decision-makers who never see patients nor hear their stories. Funding status of medications to treat skin diseases The remaining tables in this section of the CSPA Report Card describe the funding status of drug treatments that are considered the standard of care for five common skin conditions and two rare skin diseases. The lists of drugs are not exhaustive but represent common classes of medications used in the treatment of the disease in question. Selections were based on clinical practice guidelines, where these exist, and on recommendations from dermatology professional associations and patient organizations. The lists were further validated during interviews with dermatologists. The tables present the listing status of drugs as of July 31, 2011. Table 12: Funding status by province of medications to treat psoriasis Psoriasis Drug: calcipotriol (Dovonex®) calcipotriol + betamethasone (Dovobet®) calcipotriol + betamethasone (Xamiol®) calcitriol cream (Silkis®) tazarotene (Tazorac®) cyclosporine (Neoral®) acitretin (Soriatane®) adalimumab (Humira®) etanercept (Enbrel®) infliximab (Remicade®) ustekinumab (Stelara®) AB SK MB ON QC NB PE NS NL YT NIHB Full Full Full Full SA Full Full Full SA Full Full Full No Full Full No Full SA No No No No No No Full Full Full No Full SA SA SA SA SA No No No No No No SA Full No No No No No No Full Full Full SA No No No No SA SA Full Full SA SA SA SA SA Full SA No SA SA Full No Full Full SA Full Full Full Full SA Full Full SA Full SA SA SA SA SA SA SA No SA SA No SA SA SA SA SA SA SA SA No SA SA No No SA SA SA No No SA SA No SA SA No No SA SA SA No SA SA SA No SA SA No SA no restrictions restrictions not funded not Health Canada-approved National Legend: BC Abbreviations: S A = Special Authorization (also called “Limited Use” and “exceptional drug status”) NIHB = Non-Insured Health Benefits. Covers registered First Nations and Inuit. Formulary also used by NT and NU. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 CA-21 National In addition to these drugs, topical corticosteroids and methotrexate are funded in all provinces and territories for the treatment of psoriasis. Table 13: Comparison of Special Authorization criteria for biologic medications for psoriasis Standard: BC Baseline PASI score PASI > 12 DQLI >/=10 or significant involvement of exposed areas or BSA >10% Prior therapy x AB SK MB PASI not PASI >/=10 stated >/=10 x not stated ON QC PASI >/=10 PASI >/=15 x DQLI >/=15 x MTX MTX MTX, MTX or + CS + CS +/or CS CS + photo + + photo photo photo NB NS NL NIHB not not not not stated stated stated stated x x x x 2 of: Several MTX MTX MTX MTX of: 3 or MTX, CS, + + + &/or more acitretin CS CS CS CS + topical + + + + photo photo photo photo photo agents or photo or 2 of: MTX, CS, acitretin Legend: x = standard (as shown in the first column) Abbreviations: PASI = Psoriasis Area Severity Index DQLI = Dermatology Quality of Life Index BSA = Body Surface Area MTX = Methotrexate CS = Cyclosporine Photo = Phototherapy Table 14: Funding status by province of medications to treat eczema Eczema Drug: tacrolimus (Protopic®) pimecrolimus (Elidel®) alitretinoin (Toctino®)** BC AB SK MB ON QC NB PE NS NL YT NIHB SA SA SA SA* SA SA SA SA SA SA SA SA SA No SA SA* SA SA No No No No SA SA No No No No No No No No No No No No Legend: * Approved on a case-by-case basis ** Approved by Health Canada in April 2011. Still under review. Legend: no restrictions restrictions not funded not Health Canada-approved Topical corticosteroids and antibiotics for secondary infections are also funded in all provinces and territories for the treatment of eczema. CA-22 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 National Table 15: Funding status by province of medications to treat and prevent viral skin infections Viral Skin Infections Drug: BC AB SK MB ON QC NB Genital herpes and herpes zoster treatment: acyclovir Full Full Full Full No Full Full (Zovirax®) valacyclovir Full Full Full Full SA Full Full (Valtrex®) famciclovir Full No Full Full SA Full Full (Famvir®) Herpes labialis (cold sores) treatment: acyclovir cream Full No No Full No No No (Zovirax®) Herpes zoster (shingles) prevention: herpes zoster vaccine No No No No No No No (Zostavax®) Human papillomavirus (HPV) prevention of ano-genital warts: HPV vaccine (Gardasil®) – Full Full Full Full Full Full Full girls HPV vaccine (Gardasil®) – No No No No No No No boys Legend: PE NS NL YT NIHB Full Full Full Full Full Full Full Full Full Full Full Full Full Full Full No No No No Full No No No No No Full Full Full Full Full No No No No No no restrictions restrictions not funded not Health Canada-approved Zostavax®, a preventive vaccine against herpes zoster, is not publicly funded in any jurisdiction. Dermatologists interviewed for this report unanimously stated that the vaccine should be funded for seniors, who are most vulnerable to acquiring this painful and debilitating condition. National Public health programs exist in all provinces and territories for voluntary vaccination of girls with Gardasil®. Although the primary intent of these programs is to prevent cervical cancer caused by HPV, prevention of ano-genital warts is also accomplished by vaccination. There are at present no publicly funded programs to vaccinate boys, and dermatologists report this to be a clear need. Gardasil® is approved for use in females aged 9-45 and males aged 9-26. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 CA-23 National Table 16: Funding status by province of medications to treat skin cancers Skin Cancers Drug: BC AB SK MB ON QC NB PE NS NL YT NIHB SA No Non-melanoma skin cancers: imiquimod (Aldara®) No SA No SA* SA* SA SA Full SA SA aldesleukin (Proleukin®) No No No SA Full No No No No No interferon alfa 2b (Intron A®) Full No SA Full SA* Full Full SA SA SA Melanoma: N/A† N/A† No Full Legend: * Funded on a case-by-case basis. † Infused drug, for hospital administration only Legend: no restrictions restrictions not funded not Health Canada-approved Several drug options exist for the treatment of non-melanoma skin cancers—basal cell carcinoma and squamous cell carcinoma—and actinic keratosis, which is a pre-cancerous lesion of the skin. The drug 5-fluorouracil (Efudex®) is funded in all provinces. Imiquimod, a standard therapy for basal cell carcinoma, is surprisingly not covered in all jurisdictions. Even in those provinces that provide restricted access to imiquimod, special authorization criteria require that patients are first treated with 5-fluorouracil and cryotherapy before approval will be given. Melanoma is an aggressive cancer that can quickly claim the lives of those who are diagnosed. Although less common than other types of skin cancer, melanoma is responsible for 75 per cent of deaths from skin cancers. Drugs play an important supporting role in eliminating the primary tumour and preventing its spread to other organ systems. Medications for the treatment of melanoma that are funded in all provinces include dacarbazine (DTIC®), lomustine and tamoxifen. Beyond these options, individual provinces follow their own treatment protocols, although most tend to follow those of British Columbia, Ontario or the National Comprehensive Cancer Network (NCCN) in the United States. It is of particular concern that beyond these these medications, aldesleukin and even interferon alfa 2b are either only available by special access or are not at all funded in many jurisdictions. Requiring the filing of special access paperwork to gain access to a medication for a melanoma patient adds undeniable stress and delays during a time when neither is welcome. This gate-keeping approach, when Canadian lives are at stake is disconcerting. Two new treatments—vemurafenib and ipilimumab—were recently approved in the United States and are under review by Health Canada. The dermatologists and oncologists who are Canada’s experts in melanoma are optimistic that these will give patients diagnosed with melanoma substantially better odds than ever before. The CSPA calls on provincial govCA-24 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 National ernments to move swiftly to cover these treatments once they receive marketing authorization in Canada. Lack of policies for rare skin diseases Many Canadians living with a rare skin disease are in a unique situation. Generally, drugs without prior Health Canada approval for their particular disease are not listed on the formularies of public or private drug programs. For economic and practical reasons, drug companies are reluctant to undertake clinical trials for drugs with very few potential patients. For most rare diseases, therefore, it is very unlikely that promising drugs will ever receive marketing authorization. For someone with a debilitating or even life-threatening rare disease the situation is critical. The two diseases depicted in Table 17, below, are typical of this predicament. Pemphigus is a group of autoimmune diseases of the skin and/or mucous membranes in which the skin cells become separated from each other, causing widespread burn-like lesions or blisters that do not heal. It can be fatal if left untreated as the blisters spread and become infected. Cutaneous T-cell lymphoma is, as the name suggests, the manifestation on the skin of a systemic cancer. Table 17: Funding status by province of medications to treat rare skin diseases Rare Skin Diseases Drug: BC AB SK MB ON QC NB PE NS NL YT NIHB IVIG (intravenous immunoglobulin Full G) Full Full Full Full Full Full Full Full Full Full N/A rituximab (Rituxan®)† No No No No No SA* No No No No No No cyclosporine (Neoral®)† No No No No No SA* No No No No No No mycophenolate (Myfortic®)† No No No No No SA* No No No No No N/A Pemphigus: Cutaneous T-cell lymphoma: vorinostat (Zolinza®) No No No No No SA* No No No No No No bexarotene (Targretin®)‡ No No No No No SA* No No No No No No Legend: National Note: Intravenous immunoglobulin G (IVIG) for the treatment of pemphigus is covered through the Canadian Blood Services and Héma-Québec for all provinces and territories. Legend: * Funded on a case-by-case basis † Not approved by Health Canada for this indication ‡ Not approved by Health Canada, but may be available to patients who apply to Health Canada’s Special Access Programme no restrictions restrictions not funded not Health Canada-approved Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 CA-25 National The options for treatment with a drug that has been shown to be effective for a rare skin disease are few or non-existent unless the patient is in a financial position to pay for his or her medications. In Canada, physicians are allowed to prescribe a drug if there is evidence that it may be helpful and if the risks of harm do not outweigh the expected benefit. Unlike many other developed countries, Canada does not have an “orphan drug” policy to encourage development of drugs for rare diseases. Nor is there a consistent national model for funding drugs to treat rare diseases.16 This is identified by dermatologists as a critical need. Alberta has developed a formal policy for rare diseases; however, it does not apply to skin conditions. Ontario and Quebec conduct case-by-case reviews to consider the merits of promising therapies for individual patients. Policies and practices for rare diseases need to be developed that are transparent and consistent across Canada, and skin diseases, because of their serious nature, need to be included. In the meantime, access to special exemptions and emergency drug release programs needs to be expanded to include rare skin diseases. Drug review delays Several dermatologists interviewed for the CSPA Report Card object to the long delays by some provincial governments in reviewing and deciding upon whether to fund new drugs. For example, British Columbia was the second-last province to approve biological drugs for the treatment of psoriasis, years after they were funded by private insurers and available in other provincial drug programs (Prince Edward Island and Yukon still have not yet funded this class of medications for psoriasis). These delays in approvals can effectively be considered denials, especially in the cases of those diagnosed with skin cancers, where their time can be measured in days and months. Also, bureaucratic explanations for long delays in getting medications that alleviate suffering, mean very little to the eczema, psoriasis, pemphigus patients and others who may be so debilitated by their disease that they cannot leave their homes to work or go to school. Although time-to-decision statistics were not collected for this report, this information would reveal just how long skin patients must wait for new treatments following their approval by Health Canada. The CSPA will include time-to-decision data in its future reports and encourages funding bodies to approve submissions in a timely manner. Canadians with serious skin conditions cannot afford to wait years for a new drug to be funded. New drugs for the treatment of melanoma are currently under review in Canada. We urge Health Canada to make these drugs a priority and also urge the provinces to add these life-saving medications to their formularies without delay. 16.Lisa Priest. National drug policy for rare diseases has fallen between the cracks. The Globe and Mail, April 05, 2011. CA-26 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 National CSPA recommendations to improve access to medications To all provincial, territorial and federal drug programs: 1. Fund all drugs deemed the standard of care without restrictions and without timeconsuming application processes. Let the physicians together with their patients make the decisions about which therapies are appropriate. 2. Move swiftly to provide coverage for new skin cancer drugs currently in the regulatory approval pipeline, in order to save the lives of Canadians. 3. Develop national and provincial/territorial policies for rare diseases and provide coverage for promising treatments for patients with rare skin diseases. Immediately expand access to special exemptions and emergency drug release programs to include rare dermatological diseases. Skin diseases are indeed considered serious enough to warrant these considerations. To the federal government specifically: 1. The federal government should develop and implement a national “orphan drug” policy to encourage the introduction of drugs for rare diseases in all jurisdictions and should include all rare skin diseases in the policy. Based on the information we have gathered, Canada receives a resounding “fail” with respect to access to dermatological care and treatment. Canadians wait far too long to receive care. Access to treatments is severely limited. Access to and coverage for a plethora of effective medications is cumbersome, time-consuming and in many cases nonexistent. National The CSPA therefore calls on the Government of Canada to work with each of the provinces and territories in order to fulfill the promise of the Canada Health Act of reasonable access to care. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 CA-27 Quebec Quebec Access to: Grade Dermatological care Fail Medical procedures Fail Medications Needs improvement Key issues 1. Despite having a large number of dermatologists relative to the population, patients in Quebec experience long wait times for routine appointments. 2. Lack of access to phototherapy. While the Quebec government has succeeded in providing specialized dermatology treatments in tertiary care centres, the workhorse of dermatological treatment—phototherapy—is not available to one out of five Quebeckers. 3. Unreasonable and time-consuming restrictions on the use of newer drugs pose barriers to access and waste scarce dermatologist time. 4. Melanoma patients need access to all Health Canada-approved treatments in a timely manner. Currently Quebec does not cover all treatments considered to be part of the current standard of care. These and new treatments in the regulatory pipeline must be covered expeditiously to save lives. Recommendations Quebec The Canadian Skin Patient Alliance recommends that the following actions are taken by the Government of Quebec, in collaboration with dermatologists and other health professionals, and in consultation with skin patients. 1. Improve access to dermatological care: a. Reduce wait times for routine dermatology consultations to five weeks within the next three years. Strategies may include: • Determining and addressing the reasons for long wait times; • Creation of billing codes for the services of trained dermatology nurses working under the supervision of a dermatologist. b. Require that basic dermatological care is provided within reasonable commuting distance for 90 per cent of residents by dermatologists or dermatology nurses under the supervision of dermatologists. Options for achieving this goal may include: Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 QC-1 Quebec • In 2012, the Ministry of Health initiate a roundtable discussion that examines and finds solutions for the limiting factors associated with the use of teledermatology services in rural and remote regions; • Creation of a plan to expand outreach visits by dermatologists or dermatology nurses under the supervision of a dermatologist. c. Plan to meet future demands for dermatological services: • Increase the number of dermatology training places to achieve a new practice entry rate of nine per year. 2. Improve access to medical procedures: a. Ensure that every skin patient in the province has access to phototherapy by: • Providing a phototherapy clinic in every publicly funded hospital; • Including home phototherapy as an insured service for patients who cannot access a clinic. 3. Improve access to medications: a. Fund all drugs deemed the standard of care without restrictions and without time-consuming application processes. Let the physicians together with their patients make the decisions about which therapies are appropriate. b. Fund anti-viral medications for herpes simplex infections, and HPV vaccinations for boys. c. Move swiftly to provide coverage for new skin cancer drugs currently in the regulatory approval pipeline, in order to save the lives of Quebeckers. QC-2 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Quebec Detailed Tables 1. Access to dermatological care Quebec rates a failing grade on access to dermatological care. Despite having the largest number of dermatologists in Canada on a per-population basis, it has long and growing wait times. Little has been done to improve the situation and problems are expected to worsen in future years. Table 1: Performance of Quebec on access to dermatological care Measure: Quebec Benchmark Grade Wait times (median) 18 weeks 5 weeks Fail Increase in number of new dermatologists -1.5% annual growth 6.2% annual growth Fail Ratio of dermatology nurses to dermatologists 0.01 0.5 Fail What is the situation today? Long wait times Quebeckers wait far too long for a dermatologist consultation after they have been referred by their family doctor. The CSPA considers five weeks to be the benchmark for wait times for non-urgent consultations. This measure was chosen to reflect the need for patients with debilitating conditions to obtain timely treatment that may allow them to return to their daily lives without detrimental effects to their health, work, psychological state and social functioning. Five weeks was the national median wait time in 2001, as reported by the Canadian Dermatology Association (CDA) Workforce Survey. It is also a realistic standard, since wait times at this level were achieved in 2001 in Quebec.1 Quebec Fail A survey conducted independently on behalf of the CSPA in February-March 2011 showed that half of Quebeckers wait at least 18 weeks for an initial consultation with a dermatologist. One-quarter of patients must wait 24 weeks or longer for an appointment. The wait time for Quebec dermatologists ranged from one week to a full two years. And wait times are growing progressively worse, as shown in Figure 1, below. The CDA reported that the five-week wait time in its 2001 Workforce Survey had more than doubled to 12 weeks by 2006. By 2011, the CSPA survey reported that wait times had again increased to 18 weeks. Although caution should be used in comparing data from 1. Canadian Dermatology Association Workforce Survey 2001. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 QC-3 Quebec different sources, the trend toward worsening wait times is clear. The situation may actually be understated. The CDA survey examined time to the third-next appointment whereas the CSPA survey measured time to the next available appointment. Figure 1:Wait WaitTimes TimesforforDermatologist DermatologistConsultation ConsultationininQuebec Quebec 20 18 16 14 Weeks 12 10 8 6 Benchmark 4 2 0 2001 (CDA) 2006 (CDA) 2011 (CSPA) Remarkably, the CSPA survey also revealed that 36 per cent of dermatologists contacted were not taking new patients. Although this finding is inexplicable, and was not seen elsewhere in the country, it points to a possible reason why wait times are so long, especially considering that Quebec has the second-highest number of dermatologists per capita in Canada. Physicians concurred with the wait times survey findings. In fact, dermatologists in Quebec report that they are twice as difficult to access compared to other specialists. In the 2010 National Physician Survey,2 doctors were asked to rate their own accessibility on behalf of their patients. Figure 2, below, shows that 49 per cent of dermatologists in Quebec said that their accessibility was either “poor” or “fair.” Only 22 per cent of doctors said that access was “poor” or “fair” to all specialists combined, including cardiologists, neurologists, surgeons and others. 2. 2010 National Physician Survey. The College of Family Physicians of Canada, Canadian Medical Association, the Royal College of Physicians and Surgeons of Canada. QC-4 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Quebec Percentage of doctors rating their access as poor or fair Figure 2: Lack LackofofAccessibility AccessibilityofofDermatologists DermatologistsininQuebec Quebec A greater percentage of dermatologists report they are difficult to see compared to other specialists 60% 50% 40% 30% Dermatologists 20% 10% All Specialists 0% Source: National Physican Survey 2010 The issues presented below may provide policy directions to reduce dermatology wait times in Quebec. Large but falling numbers of dermatologists Quebec According to provincial billing data for 2009-10, there were 171 medical dermatologists actively practising in Quebec, excluding full-time cosmetic dermatologists, researchers and teachers. A total of 181 full-time medical dermatologists were calculated to be available in Quebec. (Some dermatologists worked more than a standard full-time work week. See Appendix 2 for calculations). This means that each full-time dermatologist served 43,736 people—a number 33 per cent lower than the Canadian benchmark of 65,000.3 The lack of correlation between the ample supply of dermatologists and long wait times in Quebec cannot be explained by the available data. Further investigation is warranted to determine whether other factors, such as higher demand, are responsible for these delays. Root causes of long wait times need to be determined and addressed. Anecdotal evidence suggests that low clinical service remuneration rates for Quebec dermatologists, coupled with a high demand for cosmetic services, are reducing the amount of time available for medical services. Despite the robust supply of dermatologists, the situation is worsening: over the fiveyear period ending 2008-09 the number of full-time dermatologists decreased by 1.5 per cent.4 3. Analysis of provincial billing data (see Appendix for methodology). 4. National Physician Database (CIHI). Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 QC-5 Quebec Specialized dermatological care is available in Quebec in large urban centres. There are six accredited Mohs surgeons in the province—the highest number relative to population in the country. Wait lists for Mohs micrographic procedures are currently between one and two months (although two to three weeks for skin cancers)—among the shortest in Canada.5 Lack of access in rural and remote areas In rural and remote areas of Quebec the shortage of dermatologists is worse. Only two cities in the northern part of province have a dermatologist6, and patients living outside urban centres must travel long distances to receive dermatological care. Twenty per cent of Quebeckers live in rural or remote communities. Yet, according to the CDA Workforce Survey of 2006, dermatologists spent only seven per cent of their time outside urban areas. Need for more dermatology nurses Access to dermatological care and long wait times could be alleviated by employing other health professionals to work alongside dermatologists. Trained dermatology nurses are being used effectively in other countries to assist busy dermatologists by seeing and screening patients, and by overseeing treatments under the supervision of a physician. In British Columbia, rheumatologists can make use of specific billing codes that can be applied to the services of trained rheumatology nurses in clinical settings. Similarly provincial health funding in Quebec to cover the costs of using trained dermatology nurses in dermatologic practices would make better use of dermatologists and provide better patient care. The best practice precedent exists and it similarly should be expanded to include dermatology nurses across the country. There are only two dermatology nurses in Quebec—by far the lowest proportion in Canada, as shown in Table 2, below.7 In the United Kingdom, there are four dermatology nurses or dermatology nurse practitioners for every five dermatologists, reflecting a team-based approached to providing care.8 In the U.S., 30 per cent of dermatologists said they used a dermatology nurse or a dermatology nurse practitioner in their practices.9 Table 2: Ratios of dermatology nurses to dermatologists Benchmark Quebec U.K. U.S. 0.5 0.01 0.8 0.3 5. 6. 7. 8. Information obtained by Dr. Evert Tuyp, August 2011. CIHI 2005 Canadian Dermatology Nurses Association An audit of the provision of dermatology services in secondary care in the United Kingdom with a focus on the care of people with psoriasis. British Association of Dermatologists and the Royal College of Physicians and Surgeons 2008. 9. Resneck, JS Jr et al. Who else is providing care in dermatology practices? Trends in the use of nonphysician clinicians. Journal of the American Academy of Dermatology 2008;58(2):211-216. QC-6 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Quebec This limited analysis suggests that Quebec, and Canada as a whole, may not have capitalized on an opportunity to make more efficient use of dermatologists’ time through the utilization of other health professionals. The CSPA is willing to organize a forum of dermatologists, other health professionals and governments to systematically explore the possibilities of innovative practice models as a means to improve dermatology services to patients. How has the Government of Quebec responded? The Government of Quebec appears to have taken steps to improve access to dermatological care, mainly by increasing the number of training positions. However, there remain significant gaps that need to be addressed. Training new dermatologists Training of new dermatologists is essential to replace retirees and to meet the future demand for services. There are currently 41 dermatologists in training (excluding visa students) at four universities in Quebec.10 Most, but not all, trainees originate from the province and might potentially practise in Quebec upon certification. The number of trainees has been rising steadily over the past five years, as Figure 4, below, shows. Since dermatological training is a five-year program, there is a lag time before trainees emerge as practising dermatologists. Given the trends shown, the number of new dermatologists in Quebec may soon grow and reverse the current declining trend. Figure 4: Dermatologists in Training in Quebec Dermatologists in Training in Quebec (ministry funded only) Quebec 45 40 35 30 25 20 15 10 5 0 2006-07 2007-08 2008-09 2009-10 2010-11 Source: Canadian Post-MD Educational Registry On average, 10 new dermatology residents enter a training program in Quebec each year; however only four trainees are expected to enter into practice in 2011. Even if these graduates remain in the province, this addition amounts to only a 2.6 per cent increase in the number of dermatologists—insufficient to replace expected retirements and prepare for rising future demand for dermatology services. As mentioned above, a growth rate of 6.2 per cent is needed to keep pace. This means that at least nine new entries are 10.Canadian Post-MD Educational Registry (CAPER). Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 QC-7 Quebec needed each year. Due to the long training program, it may be another four or five years until this level of new entries is achieved. Remuneration A potential root cause of long wait times in Quebec may be related to remuneration for medical services, which in some practices compete for time dedicated to cosmetic services. Although fees are not the only, or even the most important, reason for a dermatologist to practise in a certain area, an unrealistically low level of remuneration may limit the amount of time a dermatologist can afford to spend delivering insured services and may dissuade medical students from entering the specialty. In Table 3, below, fee payments for consultations and for repeat visits were used as indicators of overall remuneration. Fees in Quebec were generally lower than the provincial average. Compared with other provinces, Quebec may be less able to recruit and retain dermatologists. Table 3: Relative remuneration for dermatologist office visits Appointment Type Prov. Avg. QC Percentage Fee per comprehensive consultation $78.99 $62.20 79% Fee per repeat office visit $29.77 $25.80 87% Legend: 20% or more above provincial average within +/– 20% > 20% below Outreach to rural and remote communities As mentioned earlier, dermatologists in Quebec spend only seven per cent of their time outside urban centres, yet 20 per cent of population resides in rural areas.11 The province sets no requirement that a certain minimum level of dermatology services must be available regardless of where people live. Teledermatology may assist in expanding outreach to northern and rural parts of the province without the time and monetary costs of in-person travel. Yet, there are indications that this technology may be underutilized. Although Quebec, a pioneer in developing this technology, has the requisite equipment, dermatologists interviewed for the Report Card said that it is seldom used in practice. Although they would like to make more use of teledermatology, liability issues are a concern where physical examination by a trained specialist plays a key role in diagnosis. Physician fees also play a role in the utilization of teledermatology in Quebec. Unlike other provinces that include teledermatology fees in the regular fee schedule, in Quebec 11.Statistics Canada, 2006 census. QC-8 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Quebec the fees are negotiated between each regional health authority and institution. While dermatologists have been trying to change this situation for a number of years, the issue has not yet been resolved.12 Until these issues are addressed it is unlikely that teledermatology can achieve its potential to improve the quality of care and reduce costs of outreach services. CSPA recommendations to improve access to dermatological care in Quebec The CSPA calls on the Government of Quebec to collaborate with dermatology professionals and medical schools to: 1. Reduce wait times for routine dermatology consultations to five weeks within the next three years. Strategies may include: • Determining and addressing the reasons for long wait times; • Creation of billing codes for the services of trained dermatology nurses working under the supervision of a dermatologist. 2. Require that basic dermatological care is provided within reasonable commuting distance for 90 per cent of residents by dermatologists or dermatology nurses under the supervision of dermatologists. Options for achieving this goal may include: • In 2012, the Ministry of Health initiate a roundtable discussion that examines and finds solutions for the limiting factors associated with the use of teledermatology services in rural and remote regions; • Creation of a plan to expand outreach visits by dermatologists or dermatology nurses under the supervision of a dermatologist. 3. Prepare to meet future demands for dermatological services, based on expected dermatologist retirements, population growth and the rising incidence of skin disease. Fail Quebec 4. Continue to expand the number of dermatology training places to achieve at least nine new practice entries per year. 2. Access to medical procedures Access to medical procedures was assessed according to whether certain common and specialized procedures are funded and whether they are available within reasonable distance from where Quebeckers live. 12.Jean-Paul Fortin. Telehealth in Quebec: a lot of catching up to do. Le Spécialiste 2009;11(2). Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 QC-9 Quebec Table 4: Performance of Quebec on access to medical procedures Measure: Quebec Benchmark Grade Number of phototherapy facilities 1:270,000 population 1:65,000 population Fail Distance to phototherapy facilities Less than 80% >85% population has population has access access Needs improvement Procedures for vitiligo Phototherapy repigmentation insured but not always accessible Phototherapy repigmentation insured and accessible Needs improvement Specialized procedures Two out of 3 specialized procedures available in province Mohs surgery, plasmapheresis and photopheresis insured and available in province Needs improvement The Quebec government deserves credit for providing access to Mohs micrographic surgery, which is not available in every province. Also, Quebec funds phototherapy for the treatment of vitiligo. However, this is inconsequential if phototherapy is inaccessible by patients. Most crucially, the province needs to improve access to phototherapy for all skin patients. This service is currently inadequate both with respect to the number of centres and their location throughout the province. For patients without access to a clinic, home phototherapy treatments should be an insured service. What is the situation today? Phototherapy Phototherapy, including psoralen/ultraviolet A (PUVA) and broad- and narrow-band UVB treatments, is a widely used, effective and non-invasive treatment for several skin conditions, including psoriasis, acne, eczema, vitiligo, itchy skin, lichen planus, granuloma annulare and certain rare skin diseases. In some cases, it represents a cost-effective alternative that may also alleviate or slow the need for more expensive treatments or medications. While there is no definitive source of information on how many phototherapy clinics are operating in Quebec, based on information from multiple sources, it was estimated that in 2006 there were 29 locations in the province, all of which were located in major urban centres.13 The number of clinics is inadequate to serve the needs of the population: four times this number are required. Also, residents in the eastern and northern regions must travel long distances to receive phototherapy—an impractical requirement for patients who need treatments several times a week. Home phototherapy is not an insured service 13.Compiled from: Canadian Dermatology Association list of dermatologists providing courtesy UVA/B treatments for travellers; Koo, M et al. Phototherapy services in Canada (poster presentation) 2006; personal communication from Bruce Elliott, President, Solarc Systems Inc., Barrie, Ontario. QC-10 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Quebec in Quebec, although providing this option would mean that 100 per cent of residents had access to this treatment. Patients and dermatologists across Canada have increasingly reported the closure of phototherapy clinics. Hospital-based facilities, which are funded by global budgets, have closed in some areas due to budgetary pressures. Phototherapy clinics based in dermatologists’ offices cannot keep up with demand and are poorly remunerated. CSPA recommendations to improve access to medical procedures in Quebec The CSPA is calling on the Government of Quebec to take the lead, in collaboration with dermatology professionals and patients, to: 1. Ensure that every resident of Quebec has access to phototherapy by: • Providing a phototherapy clinic in every publicly funded hospital; • Including home phototherapy as an insured service for patients who cannot access a clinic. 3. Access to medications The CSPA believes that all drugs that are considered the standard of care in the treatment of skin diseases should be covered without restriction. These include drugs that have received Health Canada approval and those that have been shown to be effective for the treatment of rare skin diseases but that have not been, and are very unlikely to be, submitted for marketing authorization. Table 5: Performance of Quebec on access to medications Measure: Quebec Benchmark Grade Number of selected standard-of-care drugs listed 78% 90% Needs improvement Unrestricted drugs (of listed) 50% 80% Fail Policy in place and applies to skin diseases Policy in place and applies to skin diseases Pass Policy on medications for rare diseases Quebec Needs improvement Quebec lists on its formulary a moderate proportion of drugs deemed the standard of care for several skin diseases. A large number of these, however, are accompanied by burdensome restrictions. The Government of Quebec deserves credit for putting in place a mechanism to allow patients with rare skin diseases to access medications that have been shown to be effective but that have not been approved for that particular indication by Health Canada. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 QC-11 Quebec What is the situation today? Number of standard-of-care drugs funded Our analysis showed that Quebec funds 78 per cent of standard-of-care drugs for the treatment and prevention of several common skin diseases—below the CSPA benchmark of 90 per cent. These medications are noted in the detailed tables below. For those drugs that are not covered by the provincial formulary, unless a patient has private insurance, they must pay out of pocket. Access to critical medications that is denied completely can have devastating results for skin patients and their families. It is indeed concerning that patients don’t have access through the formulary to drugs considered to be part of the standard of care for several of the skin diseases we looked at for this report. A new treatment for eczema isn’t covered in Quebec even though it has had Health Canada approval since April 2011. A widely used topical treatment for psoriasis isn’t covered in Quebec, while it is covered in eight other jurisdictions across Canada. Restricted access to newer medications Only 50 per cent of funded drugs were available without restriction (termed “médicaments d’exception” in Quebec). Access to newer drugs, which may offer patients enhanced clinical benefit and improved quality of life, is more likely to be restricted than for older drugs. Eczema can be a very debilitating disease, and yet coverage is restricted for two topical immunomodulators for eczema patients in Quebec, making these medications more difficult to access. Two single-application-per-day topical treatments for psoriasis are also on the restricted list, even though these are cost effective alternatives to some systemic protocols, themselves médicaments d’exception. When a provincial formulary imposes rigorous restrictions to access it can mean that some patients simply don’t get the treatment they need. For example, to obtain biological products indicated for psoriasis, patients must first try to see improvement in their skin condition on a succession of treatments and drugs before the drug program will allow a newer medicine to be used. Quebec requires that the patient first try three treatments: phototherapy, plus two of the following three drugs: methotrexate, cyclosporine and acitretin. Some of these drugs have toxicities that some patients are unable to withstand and have a limited duration of use. Since almost all patients with severe psoriasis will eventually be candidates for treatment with a biologic drug, it raises the question of why governments force skin patients to undergo these unpleasant and potentially dangerous protocols before being allowed access to newer and potentially more effective treatments. Quebec’s criteria for biological drugs are the most rigid in Canada. Beyond the requirement for not being able to tolerate two other systemic treatments to be eligible for consideration, a patient must have a Psoriasis Area Severity Index (PASI) of 15 or greater— far higher than the usual score of 10. Even Third World countries will cover biological drugs in patients with a PASI of 10. QC-12 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Quebec The Dermatology Quality of Life Index (DLQI) must also be 15 or more—again, much higher than the level of 10 generally required by other provinces. Another consideration is that dermatologists must complete application forms on behalf of their patients, a process that must be repeated, in order to qualify to obtain restricted medications. Dermatologists interviewed for this report found the process frustrating because of the paperwork involved, both on the initial submission and on the frequent occasions when the application was rejected. This time-consuming procedure adds a significant burden to dermatologists whose time is already stretched. So, while on paper it appears as though psoriasis patients have access to these new medications, it would seem that in Quebec, ‘médicaments d’exception’ generally means no access. Given that psoriasis affects almost two per cent of the population, these decisions affect a great number of Quebeckers. Whether the disease is psoriasis, eczema, melanoma or any other, skin patients are often intolerant to side effects of drugs or need alternatives when medications lose effectiveness over time. For this reason, they need access to the widest possible range of choices. Funding status of medications to treat skin diseases in Quebec The tables below show the funding status of drug treatments that are considered the standard of care for five common skin conditions and two rare skin diseases. The lists of drugs are not exhaustive but represent common classes of medications used in the treatment of the disease in question. Selections were based on clinical practice guidelines, where these exist, and on recommendations from patient organizations and dermatology professional associations. The lists were further validated during interviews with dermatologists. The tables present the listing status of drugs as of July 31, 2011. Quebec Responsibility for funding medications is divided among two agencies in Quebec. The Régi de l’assurance maladie du Québec (RAMQ) covers drugs administered at home and some drugs provided in hospitals, whereas immunizations are a Public Health responsibility. Table 6: Funding status of medications to treat psoriasis in Quebec Psoriasis Medication: calcipotriol (Dovonex®) calcipotriol + betamethasone (Dovobet®) calcipotriol + betamethasone (Xamiol®) Listing Status Pre-Authorization Criteria Full N/A SA For treatment of psoriasis where calcipotriol is ineffective or poorly tolerated SA For treatment of psoriasis where calcipotriol is ineffective or poorly tolerated continued . . . Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 QC-13 Quebec Psoriasis Medication: calcitriol cream (Silkis®) tazarotene (Tazorac®) cyclosporine (Neoral®) acitretin (Soriatane®) Listing Status Full N/A No Full N/A Full N/A SA For treatment of persons suffering from a severe form of chronic plaque psoriasis: • in the presence of a score greater than or equal to 15 on the Psoriasis Area and Severity Index (PASI) or of large plaques on the face, palms or soles or in the genital area; and • in the presence of a score greater than or equal to 15 on the Dermatology Quality of Life Index (DQLI) questionnaire; AND • where a phototherapy treatment of 30 sessions or more for three months has not made it possible to optimally control the disease, unless the treatment is contraindicated, not tolerated or not accessible or unless a treatment of 12 sessions or more for one month has not provided significant improvement in the lesions; AND • where a treatment with two systemic agents, used concomitantly or not, for at least three months each, has not made it possible to optimally control the disease. Except in the case of serious intolerance or a serious contraindication, these two agents must be: • methotrexate at a dose of 15 mg or more per week; OR • cyclosporine at a dose of 3 mg/kg or more per day; OR • acitretin at a dose of 25 mg or more per day. The initial request is authorized for a maximum four months. When requesting continuation of treatment, the physician must provide information making it possible to establish the treatment’s beneficial effects, specifically: • an improvement of at least 75% in the PASI score; OR • an improvement of at least 50% in the PASI score and a decrease of at least five points on the DQLI questionnaire; OR • a significant improvement in lesions on the face, palms or soles or in the genital area and a decrease of at least five points on the DQLI questionnaire adalimumab (Humira®) etanercept (Enbrel®) infliximab (Remicade®) ustekinumab (Stelara®) Pre-Authorization Criteria continued . . . QC-14 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Quebec Psoriasis Medication: ustekinumab (Stelara®) (con’d.) Legend: Listing Status SA Pre-Authorization Criteria Requests for continuation of treatment are authorized for a maximum of six months. Authorizations for adalimumab are given for an induction dose of 80 mg, followed by a maintenance treatment beginning the second week at a dose of 40 mg every two weeks; Authorizations for etanercept are given for a maximum of 50 mg, twice per week; Authorizations for infliximab are given for a maximum of 5 mg/kg in weeks 0, 2 and 6 and then every eight weeks. Authorizations for ustekinumab are given for a dose of 45 mg in weeks 0 and 4, then every 12 weeks. A dose of 90 mg may be authorized for persons whose body weight is greater than 100 kg. no restrictions restrictions not funded not Health Canada-approved Abbreviations: Full = full benefit for eligible residents SA = special authorization (called “exceptional medications” in Quebec) N/A = not applicable In addition, topical corticosteroids and methotrexate are funded in all provinces and territories for the treatment of psoriasis. Table 7: Funding status of medications to treat eczema in Quebec Eczema Medication: Listing Status Pre-Authorization Criteria For treatment of atopic dermatitis in children, following failure of a treatment with a topical corticosteroid; SA pimecrolimus (Elidel®) SA For treatment of atopical dermatitis in children, where a topical corticosteroid treatment has failed alitretinoin (Toctino®) No Approved by Health Canada April 2011 Legend: Quebec For treatment of atopical dermatitis in adults, following failure of at least two treatments with a different topical corticosteroid of intermediate strength or greater, or following failure of at least two treatments on the face with a different low-strength topical corticosteroid tacrolimus (Protopic®) no restrictions restrictions not funded not Health Canada-approved Abbreviations: SA = Special Authorization Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 QC-15 Quebec Topical corticosteroids and antibiotics for secondary infections are also funded in all provinces and territories for the treatment of eczema. Table 8: Funding status of medications to treat viral skin infections in Quebec Viral skin infections Medication: Listing Status Pre-Authorization Criteria Genital herpes and herpes zoster treatment: acyclovir (Zovirax®) Full N/A valacyclovir (Valtrex®) Full N/A famciclovir (Famvir®) Full N/A Herpes labialis (cold sores) treatment: acyclovir ointment (Zovirax®) No N/A Herpes zoster (shingles) prevention: herpes zoster vaccine (Zostavax®) No N/A Human papillomavirus (HPV) prevention of ano-genital warts: HPV vaccine (Gardasil®) – girls Full N/A HPV vaccine (Gardasil®) – boys No N/A Legend: no restrictions restrictions not funded not Health Canada-approved Zostavax®, a preventive vaccine against herpes zoster, is not publicly funded in Quebec. Dermatologists interviewed for this report unanimously stated that the vaccine should be funded for seniors, who are most vulnerable to acquiring this painful and debilitating condition. Public health programs exist in all provinces and territories for voluntary vaccination of girls with Gardasil®. Although the primary intent of these programs is to prevent cervical cancer caused by HPV, prevention of ano-genital warts is also accomplished by vaccination. There is at present no publicly funded program in Quebec to vaccinate boys and this is felt by dermatologists interviewed for this report to be a clear need. Gardasil® is approved for use in females aged 9-45 and males aged 9-26. QC-16 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Quebec Table 9: Funding status of medications to treat skin cancers in Quebec Skin cancers Medication: Listing Status Pre-Authorization Criteria Non-melanoma skin cancers: imiquimod (Aldara®) • For treatment of external genital and peri-anal condylomas, as well as condyloma acuminata, upon failure of physical destructive therapy or of chemical destructive therapy of a minimum duration of four weeks, unless there is a contraindication SA* • The maximum duration of the initial authorization is 16 weeks. When requesting continuation of treatment, the physician must provide evidence of a beneficial effect defined by a reduction in the extent of the lesions. The request may then be authorized for a maximum period of 16 weeks. aldesleukin (Proleukin®) No N/A interferon alfa 2b (Intron A®) Full Melanoma: *Although listed as an Exceptional Access medication, Aldara® was reported by dermatologists interviewed for this report to be very difficult to obtain. Legend: no restrictions restrictions not funded not Health Canada-approved Abbreviations: Full = full benefit for eligible residents SA = special authorization (called “exceptional medications” in Quebec) N/A = not applicable In addition, dacarbazine (DTIC®) is funded in Quebec for the treatment of melanoma, as is 5-fluorouracil (Efudex®) for the treatment of actinic keratosis. Quebec Melanoma is an aggressive cancer that quickly claims the lives of those who are diagnosed. It is of particular concern that aldesleukin, which is recommended for the treatment of melanoma by Cancer Care Ontario, is not funded in Quebec. The CSPA urges the Quebec government to add this treatment to its formulary quickly, in order to grant another treatment option to Quebeckers battling this deadly skin cancer. Dermatologists and oncologists have long lamented that existing covered treatments do little to extend the lives of melanoma patients. Two new treatments—vemurafenib and ipilimumab—were recently approved in the United States and are under review by Health Canada. The CSPA calls on the Government of Quebec to move quickly to cover these treatments once they receive marketing authorization in Canada. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 QC-17 Quebec Table 10: Funding status of medications to treat rare skin diseases in Quebec Rare skin diseases Medication Listing Status Pre-Authorization Criteria Full Covered by Héma-Québec Pemphigus: IVIG (intravenous immunoglobulin G) rituximab (Rituxan®)† Case by Not approved by Health Canada for this indication case cyclosporine (Neoral®)† Case by Not approved by Health Canada for this indication case mycophenolate (Myfortic®)† Case by Not approved by Health Canada for this indication case Cutaneous T-cell lymphoma: vorinostat (Zolinza®) Case by N/A case bexarotene (Targretin®) Not approved by Health Canada for this indication. May be made Case by available to qualifying patients through Health Canada’s Special Access case Programme (SAP) Legend: no restrictions restrictions not funded not Health Canada-approved Lack of policy for rare skin diseases Many Canadians living with rare skin diseases are in a unique situation. Public and private insurers generally do not list drugs without prior Health Canada approval on their formularies. For economic and practical reasons, drug companies are reluctant to undertake clinical trials for drugs with very few potential patients. For most rare diseases, therefore, it is very unlikely that promising drugs will ever receive marketing authorization. For someone with a debilitating or even life-threatening rare disease the situation is critical. The two diseases depicted in Table 10, above, are typical of this predicament. Pemphigus is a group of autoimmune diseases of the skin and/or mucous membranes in which the skin cells become separated from each other, causing widespread burn-like lesions or blisters that do not heal. It can be fatal if left untreated as the blisters spread and become infected. Cutaneous T-cell lymphoma is, as the name suggests, the manifestation on the skin of a systemic cancer. Quebec’s pharmaceutical policy, launched in 2009, outlined its approach to rare metabolic diseases. According to dermatologists interviewed for the Report Card, the government will review requests for unapproved drugs for skin diseases on a case-by-case basis QC-18 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Quebec for patients who have no other alternatives. We hope to confirm that rare dermatological diseases will be deemed on par with others and that patients suffering with them will merit due consideration. CSPA recommendations to improve access to medications in Quebec The CSPA calls on the Government of Quebec to: 1. Fund all drugs deemed the standard of care without restrictions and without timeconsuming application processes. Let the physicians together with their patients make the decisions about which therapies are appropriate. 2. Fund anti-viral medications for herpes simplex infections, and HPV vaccinations for boys. Quebec 3. Move swiftly to provide coverage for aldesleukin as well as the new skin cancer drugs currently in the regulatory approval pipeline as they become available, in order to save the lives of Quebeckers. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 QC-19 Appendices Appendix 1 Information Sources In addition to the sources of information listed in the footnotes to the Report Card, the following resources were used. Dermatologist fees Table 1: Dermatologist fees Codes used: Province Source Consultation Repeat Visit British Columbia Medical Services Commission. June 2011 00210 Consultation 00207 Subsequent office visit Alberta Alberta Health Care Insurance Plan Schedule of Medical Benefits. March 2011 03.08A Comprehensive 03.07B Repeat consultation consultation Saskatchewan Payment Schedule for Insured 9F Consultation Services Provided by a Physician. April 1, 2011 7F Follow-up assessment Manitoba Physician’s Manual. April 1, 2010 8550 Consultation 8530 Subsequent visit Ontario Schedule of Benefits. July 1, 2011 A025 Consultation C022 Subsequent visit Quebec Manuel Des Médecins Spécialistes (no 150). Mars 2011 09249 Consultation 09182 Visite de contrôle (Unit values 1.45) Code 125 Major or regional consultation Code 121 Other office visit New Brunswick Schedule of Fees of the New Brunswick Medical Society. April 2010. Prince Edward Island Master Agreement Between the 0360 Consultation Medical Society of Prince Edward Island and the Government of Prince Edward Island. April 1, 2007 – March 31, 2010 0313 Limited office visit Nova Scotia MSI Physicians Manual. May 2011 03.08 Comprehensive consultation 03.03 Subsequent visit Newfoundland Medical Payment Schedule. and Labrador April 1, 2009 101 Consultation 115 Specific reassessment Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 A-1 Appendix 1 Medications Information on funded medications was retrieved from published government drug program formularies and is effective July 31, 2011. Drug program managers were invited to validate the information. Table 2: Formulary sources Jurisdiction Source BC Online search of BC Pharmacare formulary (August 10, 2011) www.health.gov.bc.ca/pharmacare/benefitslookup/faces/Search.jsp No response received to request to validate information BC Cancer Agency Chemotherapy Protocols and “Protocol by Drugs Index August 2011” www.bccancer.bc.ca/HPI/ChemotherapyProtocols/default.htm AB Online search of Alberta Health and Wellness formulary (August 10, 2011) https://www.ab.bluecross.ca/dbl/publications.html Validated by Alberta Health and Wellness January 2011 SK Online formulary search (August 10, 2011) http://formulary.drugplan.health.gov.sk.ca/ Validated by Saskatchewan Pharmacare February 2011 Cancer drug coverage validated by Saskatchewan Cancer Agency, April 2011 MB Online formulary search (August 10, 2011) http://web6.gov.mb.ca/eFormulary/ Validated by Manitoba Pharmacare February 2011 ON Online search of Ontario Public Drug Programs formulary (August 10, 2011) www.health.gov.on.ca/english/providers/program/drugs/odbf_eformulary.html Referenced Exceptional Access Program document “Drugs Not Considered for Reimbursement. June 4, 2010” Validated by OPDP February 2011 Online search of Cancer Care Ontario chemotherapy protocols (August 10, 2011) www.cancercare.on.ca/cms/one.aspx?portalId=1377&pageId=10760 QC List of Medications, August 3, 2011 List of Medications – Institutions, July 6, 2011 RAMQ declined to validate the information February 2011 NB New Brunswick Prescription Drug Program Formulary, June 2011 Validated by NBPDP, February 2011 PE PEI Pharmacare Formulary (no date) and updates to June 2011, retrieved August 10, 2011 at: http://healthpei.ca/formulary Validated by PEI Pharmacare February 2011 NS Online search of Nova Scotia Pharmacare formulary: www.gov.ns.ca/health/Pharmacare/formulary.asp Search of Systemic Therapy list of Cancer Care Nova Scotia: www.gov.ns.ca/health/cancer_drugs/ No response received to request to validate the information January 2011 NL NLPDP Coverage Status Table, July 2011. Special Authorization Criteria July 2010. Information validated by NLPDP January 2011. YT Yukon Drug Programs Formulary, July 2010. No response received from Yukon Drug Programs to request to validate information January 2011. NT NU NIHB A-2 NT uses the NIHB formulary (see below). NU uses the NIHB formulary (see below). NIHB formulary 2010 and updates to Spring-Summer 2011. Information validated by NIHB in February 2011. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Appendix 2 Methodologies for assessing access to dermatological care The following methodologies show the approach to developing measures and benchmarks for the “Access to dermatological care” sections of the Report Card, and provide details of how the measurements were calculated. Benchmarks for access to dermatological care In summary, the following benchmarks were used to assess access to dermatological care. Table 1: Benchmarks for access to dermatological care Measurement Benchmark Wait times 4 weeks Population per dermatologist full-time equivalent 65,000 Annual rate of growth in dermatologist numbers required to meet rising incidence of skin diseases (2.8%) and replace retirements (3.4%) 6.2% per year Rationale From the patient’s perspective, wait times for a dermatology appointment are the key measure of access to dermatology care. For this report, a median wait time of four weeks for a non-urgent consultation was chosen as a benchmark. Four weeks reflects the need for patients with debilitating conditions to obtain timely treatment that may allow them to return to their daily lives without detrimental effects to their health, work, psychological well-being and social functioning. This is a realistic level since it was achieved in 2001.1 Merely measuring wait times, however, is not sufficient. There must also be an understanding of the underlying causes of long wait times in order to suggest actions to improve the situation. A simple supply-demand model, shown below, captures the approach taken in this report card to assess the various factors that contribute to wait times. 1. Canadian Dermatology Association Workforce Survey, 2001. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 A-3 Appendix 2 Factors Affecting Supply and Demand for Figure 1: Factors affecting and demand for medical dermatology services Medicalsupply Dermatology Services Demand • Population growth • Decrease incidence • Treatment seeking Supply Medical dermatology FTEs per population • Growth rate (trainees, retirements) • Remuneration vs. cosmetic • Practice models Measuring supply Full-time equivalents (FTEs) were calculated based on fee-for-service billing information provided by provincial governments. This captures medical services and omits other activities such as cosmetic procedures, research and teaching. This measure indirectly accounts for the number of hours worked and the number of patients seen per dermatologist. The methodology used to calculate FTEs was developed by Dr. Evert Tuyp2 who kindly obtained and analyzed provincial billing data to include in the model used in the Report Card. This approach modifies the methodology used by the National Physician Database (CIHI) by applying tailored income breakpoints that more accurately reflect the economic realities of dermatology practice by factoring in overhead expenses. Calculation of FTEs 1. From the 2009-10 provincial billing data, extract the number of dermatologists who billed above a threshold of $150,000. This represents a minimum income for fulltime fee-for-service practice. 2. The $150,000 breakpoint income was grossed up by a fixed percentage of dermatologist overhead costs (44.8 per cent) to achieve a revised lower limit of $271,781. 3. Physicians billing between one and two times the lower limit of $271,781 were counted as one FTE. 2. Tuyp E. Full-time equivalent (FTE): a critique of its use in allocation and remuneration. Submitted for publication. A-4 Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 Appendix 2 4. Partial FTEs were calculated for dermatologists billing less than $271,781. 5. For dermatologists who billed greater than twice the lower limit (i.e., $543,562), this amount was subtracted and the remainder divided by $543,562. 6. FTEs were summed by province. A benchmark of one FTE per 65,000 Canadians was used in this report. This number is based on the ratio existing in 2001 when wait times averaged four weeks. It is about double the proportion of dermatologists in Western Europe (one per 30,300 population)3 and the United States, where one per 33,000 population has been identified as appropriate.4 Clearly, the CSPA would like Canadians to enjoy the same standards of care as their American and European neighbours, but for now a more reasonably attainable goal is twice their ratios. In addition to measuring system performance according to today’s needs, the adequacy of actions taken by governments and others is also assessed, according to whether they have prepared to meet future demands. Based on the Canadian Dermatology Association Workforce Survey of 2006, it was estimated that retirements will deplete the current dermatologist ranks at a rate of 3.4 per cent annually. Therefore, new practice entries must at equal or exceed this rate to avoid losing ground. Measuring demand Future demand is benchmarked as a rate of growth in demand for services. The major factors that contribute to demand are outlined in the table below. Since data are not available to measure incidence trends in every skin disease, an overall level of growth was estimated conservatively at 2.8 per cent. Similarly, although we know that the Canadian population is better educated and informed about health, there are no figures measuring trends in seeking treatment for skin diseases. Table 2: Forecasting the growth of demand for dermatology services Factor influencing demand Annual growth rate Population growth 0.8% Skin disease incidence: 2.0% (estimated) • Psoriasis Increasing • Atopic eczema Increasing • Melanoma skin cancers 2% • Nonmelanoma skin cancers 3% Estimated total annual growth of demand for medical dermatology services 2.8% (minimum) 3. Wound Management Decision Support Database. Frost & Sullivan’s Healthcare Practice. 2004;2(12). 4. Krasner M et al. Dermatologists for the nation – Projections of supply and demand. Arch Dermatol. 1977;113(10):1367-1371. Canadian Skin Patient Alliance · Skin Deep: Report Card on Access to Dermatological Care and Treatment in Canada 2012 A-5