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Establishing New York’s Essential Health Benefits Package (EHB): What Policymakers Can Do to Ensure Access, Quality & Affordability for Cancer Patients The health care needs of cancer patients are of those with serious and life-threatening illnesses, as well as chronic health care issues. Treating cancer involves accessing a complex and exhaustive set of health care services including prevention, early detection, chemotherapy, radiation therapy, surgery, diagnostic and biomarker evaluation, prescription drugs, cancer treatment planning and survivorship care, among others. These long-term treatment plans often put patients at great financial risk due to the cost sharing burdens associated with care, even if they are insured. New York cancer patients and survivors, alike, who are currently uninsured and underinsured, are among those who will benefit greatly from the establishment of the state’s Health Exchange, as part of implementation of the federal Affordable Care Act (ACA). After much anticipation, the U.S. Department of Health and Human Services (HHS) released a bulletin, on December 16, 2011, to provide guidance to states when determining the essential health benefits (EHB) for state health exchanges, the small group market inside and outside the exchange, benchmarks for Medicaid and Basic Health Programs. Instead of providing a detailed list of criteria and services that states must cover in 2014, the bulletin was vague, leaving in depth coverage decisions to states, proposing unnecessary flexibility for insurers, and creating confusion on how state policymakers move forward. Unless New York policymakers follow the state’s rich tradition of providing affordable access to comprehensive care, the promise of the ACA will not become reality for cancer patients or survivors. If the state’s essential health benefit (EHB) package leans too heavily toward maximizing flexibility at the expense of ensuring access to comprehensive and quality cancer care, cancer patients may find themselves having insurance that is inadequate to meet their health care needs, while being saddled with crippling financial responsibility for their care. In order to get it right the first time and meet the needs of cancer patients, New York policymakers must take a comprehensive approach when setting the standard for the state’s Health Exchange and EHB package. Creating a benchmark plan that is broad in scope, while offering affordable coverage, is key. We, the undersigned, offer the following road map to use when making these critical choices: A Road Map to Comprehensive Cancer Care for New Yorkers PREVENTION AND RISK REDUCTION Provide coverage without cost-sharing for preventive services rated “A” and “B” by the U.S. Preventive Service Task Force, as required by the Affordable Care Act, including evidence-based tobacco-cessation treatments and various cancer screening services. http://www.uspreventiveservicestaskforce.org/uspstf/uspsabrecs.htm Coverage for the use of tamoxifen and raloxifene as preventive measures for women at high risk for breast cancer, as determined by their physicians. Coverage for patient/doctor discussion of environment and life-style for prevention and risk reduction plan. Coverage for primary care physician role in coordination of patient preventive care. All health benefits plans must cover cancer screening and FDA-approved and CDCrecommended cancer vaccines (Gardasil and/or Cervarix) either at no cost to employees or their covered dependents or at a reasonable cost-sharing level defined as at a level that does not present an impediment to being screened or obtaining an appropriate vaccination. SCREENING & EARLY DETECTION Evidence-based screening and early detection services based on risk profile, to facilitate early diagnosis and prompt treatment. Risk assessment services, including genetic counseling and testing in high risk situations to determine risk of developing cancer and facilitate development of risk-based options for screening and intervention. Ensure that health benefit plans cover, at either no cost or at a reasonable cost-sharing level, evidence-based screening services for breast, colorectal, cervical, lung, and prostate cancer, and all FDA-approved vaccines for the prevention of cancer. Provide coverage for enrolled employees and their covered dependents for cancer screenings, and coverage for vaccines that have been approved by the FDA, and recommended by the CDC, for the prevention of cancer. All health benefit plans must cover the following specific tests and cancer screenings: o Evidence-based screening ultrasound, magnetic resonance imaging and/or other screening tests for breast cancer based on doctor/patient assessment of benefit and harms of screening as well as on a woman's preference and risk profile. DIAGNOSTIC Comprehensive diagnostic services to ensure accurate diagnosis and staging using all available evidence based technologies. Coverage for a second opinion regarding diagnosis and/or treatment choices and plan. CARE PLANNING & DOCTOR-PATIENT COMMUNICATION A written plan for the patient to keep that: o Outlines all elements of treatment, including surgery, chemotherapy, radiation therapy, and supportive care, including management of the symptoms of cancer and cancer care and appropriate psychosocial services. o Provides adequate detail of resources to assist the patient’s caregiver and family members. o Includes a plan for fertility preservation, if appropriate for the patient. o Include discussion of genetic counseling and biomarker testing, if appropriate, to support treatment decisions and make risk assessment. o Is provided at the beginning of diagnosis when there are significant changes in the patient’s condition or care and throughout the survivorship continuum from treatment thru post-treatment aftercare. o Is directly communicated to the patient by his/her doctor orally and in writing. o Provides adequate detail to assist the patient in managing care and making treatment decisions. o Is provided to the patient in culturally appropriate language. o Facilitates the coordination of multidisciplinary care provided by all health care providers to support integrated patient centered care. TREATMENT All elements of multi-disciplinary treatment, as recommended by the patient’s care team and supported by available evidence, including: o Surgery o Appropriate reconstructive surgery, such as reconstruction after mastectomies. o Radiation therapy. o Drugs and biologicals, whether physician-administered or self-administered. o Drugs and biologicals for off-label uses, according to the evidence-based standards utilized in the Medicare program. o Bone marrow and umbilical cord blood transplants. Diagnostic and biomarker testing. Pharmacy Benefit That Includes: o Prescription drug coverage with full coverage of the six protected classes, offering more than one drug per class and as defined in the Medicare Part D program. o Patient appeals process. o Formulary standards that require inclusion of multiple drugs in a range of therapeutic categories and comprehensive coverage for therapies needed by the most vulnerable patients. o Independent Pharmacy and Therapeutic (P&T) Committees that review the drugs included on those formularies, as well as the utilization management requirements for such drugs, and consider newly approved treatments and indications for inclusion in formularies within certain timeframes. o Includes a mechanism for incorporating new therapeutic categories or classes in order to protect patients’ access to innovative therapies as they become available. Equal treatment of out-of-pocket expense to patient between I.V. & oral chemotherapy treatments. Supportive and psychosocial care including treatment for pain, nausea and vomiting, fatigue, depression, and other side effects of cancer and cancer treatment. Care by out-of-network physicians and other health care providers, if in-network care does not meet the medical needs of the patient. Prohibit the use of excessive cost-sharing required by prescription drug benefit designs that utilize specialty tiers; out-of-pocket costs for prescription drug coverage should be transparent and included in the out-of-pocket limits pursuant to the ACA requirements ACCESS TO NATIONAL CANCER INSTITUTE (NCI) CANCER CENTERS Ensure access to cancer treatment at Commission on Cancer-accredited programs and/or NCI-designated cancer centers. ACCESS TO CANCER CLINICAL TRIALS Ensure that New York cancer patients continue to have affordable access to cancer clinical trials, via accelerated decision making, within the state’s external appeals process, until 2014, when stand alone benefit covering clinical trials goes into effect. Plans should be required to establish and make available informational materials and programs to ensure that providers are encouraged to make referrals to oncologists and other cancer specialists who can provide individuals with access to clinical trials. SURVIVORSHIP CARE A written and orally communicated treatment summary & survivorship care plan. Monitoring of late & long-term effects of cancer treatment. Long-term follow up care, as defined in evidence-based survivorship care standards. Access to ongoing, evidence-based cancer screening, counseling and other preventive services, according to standards articulated for cancer survivors. Comprehensive rehabilitation services for the period of time required to address the effects of cancer and cancer treatment, including prosthesis & restorative. Full lymphedema treatment coverage including lymphedema sleeves, bandages, among others. Coverage for primary care physician guidance in coordination of survivorship care. PALLIATIVE CARE ACROSS THE CONTINUIM OF CARE Supportive care, symptom management, and palliative care from the time of diagnosis and across the continuum of care, including but not limited to services provided through hospice. Comprehensive support resources for the caregiver and family. Discussion of palliative care options with the patient and inclusion of options for care in the written care plan provided to the patient by the care team. Coverage of alternative palliative care services. STRUCTURAL Designate representatives with cancer perspective to New York’s Health Exchange board including two consumer advocate/ survivors who are actively involved with a community based grass roots cancer organization to New York’s Health Exchange board. Establish point of contact, or patient navigator, within the Department of Financial Services/Department of Health specifically for cancer patients & advocates. HARNESS TECHNOLOGY Establish a standard/universal prior authorization process for drugs. Use Exchange information technology to assure rapid access to appropriate drugs. Ease burden on prescribers & pharmacists.