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Support for the Financial and Other Costs of Cancer Care Trish Goldsmith CancerCare © 2016 Patient Access and Engagement Report - Confidential – Not For Distribution. Among respondents younger than 65, 10% to 25% reported being dissatisfied with certain aspects of their insurance coverage for cancer treatment. Those areas that garnered the most dissatisfaction include access to new treatments or genetic testing, ability to pay for medications, affordability of co-payments and deductibles, co-pays for tests, access to complementary therapies, and access to an insurance case manager. Dissatisfied with aspects of Insurance Coverage for Cancer Ages 25 to 64 (n=341) The choice of doctors The choice of hospitals and/or treatment centers Getting timely approvals for tests or procedures Access to advanced imaging technology Access to newly approved treatments or drugs In-network access to psychological counseling/support Access to genetic testing Access to Clinical trials My ability to pay for medications recommended by my doctor Affordability of co-payments Access to an insurance case manager who explains/assists with… Amount I have to pay for the tests recommended by my doctor Access to complementary therapies such as acupuncture or massage Affordability of deductibles 0% 5% 10% 15% Q. 14: How satisfied are you with the following aspects of your insurance coverage for your cancer treatment? CancerCare © 2016 Patient Access and Engagement Report - Confidential – Not For Distribution. 20% 25% 30% Referrals for financial support were even lower than those for emotional support. Similarly, however, PCPs referred more often than other care team members, and referrals were rarely made for respondents 55 years and older. Care Team Members Making Support Referrals - Financial % of respondents 40% Per survey 6, incidence of distress regarding finances for 25-54 year olds is 69%; for 55 and older, it’s 33%. 22% * * 19% 20% 13% * 9% 5% 11% 9% * 7% * 5% 2% 4% 2% 0% PCP Oncologist Family Member/ Caregiver 25 to 54 Years Old (n=189) PA or NP Social Worker or Psychologist Nurse 55 and Older (n=312) *Indicates statistically greater at 90% confidence level 28. Which of the following members of your cancer care team have referred you to a patient support service or professional to help you cope with financial distress? CancerCare © 2016 Patient Access and Engagement Report - Confidential – Not For Distribution. n=501 Of those respondents ages 25 to 64 years old, 25% stopped working during treatment and 13% switched from full- time to part-time employment. Approximately one-third of all respondents continued to work full-time. Employment Status During Treatment 60% % of respondents 47% 40% 34% * 35% 25% * 20% 14% 13% 8% 13% 10% * 1% 0% Continued working full time Stopped working N/A, Not working before receiving treatment 25 to 64 Years Old (n=341) Continued working part time Switched from full time to part time work 65 and Older (n=168) 10. What was your employment status while you were being treated for cancer? CancerCare © 2016 Patient Access and Engagement Report - Confidential – Not For Distribution. n=509 Roughly one-fifth to one-third of patients reported it was difficult to determine out-of-pocket costs before incurring the expense. This finding did not vary based on patients’ demographics or the length of time since diagnosis. Out-of-pocket hospital fees were considered the most difficult to determine. Ease of Determining Out-of-Pocket Costs 100% % of respondents 80% 21% 25% 26% 28% 24% 25% 24% 41% 37% 35% 35% 32% Physician Fees Scans and X-rays Treatments Procedures Hospital fees 31% 60% 25% 23% 40% 20% 0% n=509 Somewhat or Very Easy Neither Easy or Difficult Somewhat or Very Difficult 44. How difficult or easy was it for you to determine the out-of-pocket cost of each of the following BEFORE you incurred the expense? CancerCare © 2016 Patient Access and Engagement Report - Confidential – Not For Distribution. Average monthly out-of-pocket costs for patients in treatment, ages 25 to 64, are $1112, compared to $584 for those 65 or older. About a quarter of the monthly expense is for copays and deductibles for drugs, doctor visits and tests. Another third reflects spending on services and non-prescription medicines to help with symptoms and side effects. Average Monthly Out-of-Pocket Costs $350 Average Cost $300 B $299 $200 B $208 B $212 $250 B $205 B $188 $165 $127 $150 $97 $100 $97 $98 Special clothing, wigs, etc. Non-prescription medications $50 $0 Co-payments and deductibles for drugs, doctor visits and tests Transportation to and from clinic visits, baby-sitting, Services to help with symptoms and side effects such as acupuncture or massage therapy 25 to 64 Years Old (n=341) (A) 65 and Older (n=168) (B) * Letters indicate statistically greater at 90% confidence level 45. Thinking about the time you were getting cancer treatment, on average, how much did you spend out of pocket each month on the following? CancerCare 2016 Patient Access and Engagement Report © - Confidential - Not for Distribution Among respondents under Medicare age, 25% reported that their financial situation was never considered by their care team in treatment planning and 34% say it was sometimes considered. Yet, 58% reported being distressed about their finances while in treatment. Frequency Health Team Considers Patient’s Financial Status when Planning Treatment % of respondents 100% 80% 60% 40% 25% 36% * 34% 41% 29% 35% 20% 0% Never or Rarely Sometimes Often or Always % of respondents Patient’s Level of Financial Distress During Treatment 100% * 76% 80% 60% 40% 20% 30% * 28% 7% 42% * 17% 0% Extremely/Very Distressed Somewhat Distressed 25 to 64 Years Old (n=341) Not At All/A Little Distressed 65 and Older (n=168) *Indicates statistically greater at 90% confidence level 31. How often do you feel your healthcare team takes your financial situation into consideration when recommending treatment options? 23. Thinking about the time when you were getting cancer treatment, how distressed (e.g. anxious, extremely upset, or in emotional pain) were you from thinking about your finances? CancerCare © 2016 Patient Access and Engagement Report - Confidential – Not For Distribution. Expenses related to cancer treatment had an impact on numerous aspects of patients’ finances. Onethird of respondents ages 25 to 54 cut back on essentials such as groceries and transportation and/or borrowed from family/friends; one-quarter applied for assistance from patient organizations or providers; 21% missed utility bills; and 17% missed rent/mortgage payments. Experiences Due to Treatment Bills I asked for financial help from a church or… 36% 41% I cut back on non-essential expenses I cut back on groceries, transportation, clothing, tuition 20% 11% I borrowed money from family/friends I applied for financial assistance from a patient support organization I applied for financial assistance from my doctor’s office or hospital 6% 4% I missed paying bills such as heat, electricity, phone 0% 4% I considered declaring bankruptcy 24%* I moved to a less expensive home 24% * I borrowed money from a bank or credit union 40% 60% 11% * 2% 11%* 6% 2% 0% * 11% 5% * 5% 10% 15% % of respondents % of respondents 25 to 54 Years Old (n=215) * 17% * 4% I declared bankruptcy 21% * 20% 17% I missed rent/mortgage payments 33%* 31% * 9% 3% 55 and Older (n=294) *Indicates statistically greater at 90% confidence level 33. Which of the following have you experienced as a result of bills related to your cancer treatment? Please select all that apply. CancerCare © 2016 Patient Access and Engagement Report - Confidential – Not For Distribution. 20% Many patients, especially those ages 25 to 54 years, took steps to reduce the costs of treatment, some of which may have compromised their cancer treatment: 39% skipped doctors’ appointments; 38% postponed or did not fill prescriptions; 34% skipped doses of prescribed drugs; 30% ordered medication from non-US sources; and 31% cut pills in half. Steps Taken to Reduce Treatment Expenses Done Often or Always Done Sometimes 25 to 54 Years Old (n=215) 55 and Older (n=294) 25 to 54 Years Old (n=215) 55 and Older (n=294) 27% 10% 17% 4% 27% 7% 16% 8% 27% 7% 16% 5% 25% 6% 18% 5% Postpone or skip psychological counseling or support 24% 6% 16% 4% Apply for financial assistance from my doctor/hospital 24% 4% 21% 7% Discuss changing my treatment to one that costs less 24% 3% 19% 10% Postpone or skip follow-up testing 23% 4% 16% 5% Postpone or not fill prescriptions 21% 2% 17% 6% Postpone or skip doctor's appointments 20% 2% 19% 7% Skip dosages of prescribed drugs 20% 2% 14% 5% Postpone or skip blood work 17% 2% 18% 3% Order medications on-line from non-US sources Cut pills in half 16% 14% 3% 4% 14% 17% 2% 4% Apply for co-pay assistance to cover medication costs Choose to use a lower cost medication than what the doctor recommended Delay or skip complementary treatment Apply for financial assistance for non-medical expenses such as transportation Indicates statistically different at 90% confidence level 25. How often do you do each of the following in order to REDUCE your expenses related to your cancer treatment? CancerCare © 2016 Patient Access and Engagement Report - Confidential – Not For Distribution. Among those ages 25 to 44, 39% of respondents indicated that their insurance company required they follow a step-therapy process to manage symptoms/side effects. For a majority of these patients, this required using a non-preferred medicine for 2 to 3 months. Step Therapy: Required Time for Using Mandated Medicine Insurance Company Required Step Therapy 60 100% 56% 88% 80% 40 55% 60% 40% 21% 39% 21% 20 20% 7% 6% 5% 0 0% Yes 25 to 44 (n=145) No Don't know 45 and older (n=382) One month or less Two to three months Four to six months 25 to 44 (n=145) 23. Has your insurance company ever required you to follow ''step therapy'' to manage any symptoms/side effects you experienced? 24. How long did you have to use the first medicine before you could have the one you and/or your doctor preferred to manage your symptoms/side effects? CancerCare © 2016 Patient Access and Engagement Report - Confidential – Not For Distribution. As a result of having cancer, the ability to perform day-to-day activities was dramatically compromised for one-quarter to one-third of respondents. Even some of those whose treatment was completed, whether or not they were on maintenance therapy, continued to suffer in this way. Activities Reduced Completely or A Lot 50% 40% 46% 37% 37% 34% 37% 34% 36% 30% 20% 10% 34% 26% 19% 17% 33% 25% 28% 26% 24% 28% 24% 17% 9% 12% 22% 19% 19% 14% 13% 7% 4% 7% 13% 13% 6% 3% 0% In Active Treatment (n=102) Completed Treatment, On Maintenance Therapy (n=118) Completed Treatment, Not On Maintenance Therapy (n=257) 43. How much has your ability to do the following activities been reduced as a result of having cancer? CancerCare © 2016 Patient Access and Engagement Report - Confidential – Not For Distribution. Having cancer changes lives, especially for those ages 25 to 54. About one-half of the respondents in this age bracket reported a lot or complete change in the physical, emotional, financial, social, and spiritual aspects of their lives. Another one-quarter reported moderate changes in these areas. Changes in Life Since Cancer Diagnosis Physical Emotional Social Financial Spiritual 100% % of respondents 19% 80% * 38% 25% * 20% * 44% 24% 60% 40% 24% 30% * 56% 24% 29% * 31% * 61% 58% 30% 25% * 57% 26% * 32% * 52% 32% * 47% 24% 21% * 19% 46% * 43% 23% 19% 24% 19% 0% 25-54 Years Old (n=267) 55 and Older (n=238) 25-54 Years Old (n=267) 55 and Older (n=238) A Lot or Complete Change 25-54 Years Old (n=267) 55 and Older (n=238) Moderate Change 25-54 Years Old (n=267) 55 and Older (n=238) 25-54 Years Old (n=267) Slight or No Change *Indicates statistically greater at 90% confidence level 10. Compared to before you were first diagnosed with cancer, how much change has there been in the following aspects of your life? CancerCare © 2016 Patient Access and Engagement Report - Confidential – Not For Distribution. 55 and Older (n=238) For the vast majority of respondents, being diagnosed with cancer caused distress. The impact of cancer on their family was most often reported as being extremely stressful. In all aspects of life mentioned in this survey, respondents ages 25 to 54 were significantly more likely than those 55 and older to report being highly or extremely distressed. Cancer-Related Distress 25-54 Years Old (n=267) The impact of your cancer on your family 48% * 28% 30% * How you feel physically 42% * Finances 40%* 29%* * 28% * Ability to work 39% Ability to do things you love to do * 38% 24% How long you expect to live 35% * * 30% 0% 20% 55 and Older (n=238) 40% 20% 24% 13% 29% 19% 31% 38% 60% 14% 35% 80% Somewhat Distressed 66%* 14% 74%* 14% 100% 0% 66% * 20% 71% * 15% 20% % of respondents Highly or Extremely Distressed 67%* 20% 16% 10% 33% 52%* 28% 40% 60% % of respondents Not At All or Slightly Distressed *Indicates statistically greater at 90% confidence level 11. How distressed (anxious, extremely upset, or in emotional pain, for example) have you been due to the impact cancer has had on the following aspects of your life? CancerCare © 2016 Patient Access and Engagement Report - Confidential – Not For Distribution. 80% 100% Respondents ages 25 to 54 experienced similar levels of distress due to the impact of cancer, regardless of ethnicity. African Americans/Hispanics, however, were significantly more likely than whites to report being distressed about how long they expected to live. Cancer-Related Distress – Ages 25 to 54 White (n=120) The impact of your cancer on your family 51% Ability to work 41% Finances 40% Ability to do things you love to do 38% How you feel physically 38% How long you expect to live 36% 0% 20% African American / Hispanic (n=133) 23% 23% 37% 28% 33% 28% 30% 60% 30% 38% 31% 31% 100% 0% 20% % of respondents Highly or Extremely Distressed Somewhat Distressed 21% 44% 28% 36% * 35% 80% 22% 33%* 44% 43%* 21% 32% 37% 35% 34% 33% 40% 46% 26% 40% 60% 29% 29% 80% % of respondents Not At All or Slightly Distressed *Indicates statistically greater at 90% confidence level 11. How distressed (anxious, extremely upset, or in emotional pain, for example) have you been due to the impact cancer has had on the following aspects of your life? CancerCare © 2016 Patient Access and Engagement Report - Confidential – Not For Distribution. 100%