Five-Year Action Plan to Address the Financial hardship of cancer in Canada

1. Five-Year Action Plan to Address theFinancial hardship of cancer in Canada A CALL FOR ACTION

2. The Need • In 2012 • 186,400 new cases of cancer will be diagnosed in Canada • Cancer is the leading cause of premature death • Will take approximately 75,700 Canadians from their families • 40% of women and 45% of men will develop cancer in their life times

3. The Action • Nearly three years go the Canadian Cancer Action Network and the Canadian Cancer Society set out to understand the financial impact of a cancer diagnosis on Manitobans • Project funded by CCAN, CCS National and CCS Manitoba • Project set out to do four things: • Complete a comprehensive Pan-Canadian literature review • 72 different studies reviewed including 55 Canadian studies • Conduct interviews with key informants – individuals from a wide span of the health care continuum • Interview cancer patients, caregivers and family members to understand the gap between research findings and the Manitoba experience • Challenge other regions of the country to understand the national scope of this problem

4. What the Committee Found • When Manitobans are diagnosed with cancer, their struggle is often financial as well as medical • Some cancer patients and their families face financial ruin because of outdated and inconsistent public policies • Despite Canada’s universal health care system, a 2009 study found virtually all patients still incur substantial out-of-pocket care expenses • 91% of cancer patients will suffer a loss of income or rise in expenses • The burden significant for 16.5% • It will be unmanageable for 3.9%

5. RISING EXPENSES FINANCIAL HARDSHIP DECLINING INCOME What the Committee Found continued… • Two distinct realities emerged: • True financial hardship is experienced. For some ordinary Canadians, a cancer diagnosis begins a financial tailspin that pushes them • over the edge resulting in debt, distress, bankruptcy and even a lifetime on social assistance • In virtually all cases, a cancer diagnosis has some negative impact on family finances as income drops and costs increase more than most expect

6. “I lost my home. The five of us moved in temporarily with my parents’ two-bedroom apartment. That was hard demanding wise and it was really hard pride wise. It was hard to hear my kids say ‘I never thought we’d be homeless.’” - Teresa Solta, Self employed accountant, cancer caregiver and cancer patient

7. $ • Lost wages • Job loss • Limits to EI • Ineligible for • CPP • Little help for • caregivers • No private • insurance • No EIA until • savings • exhausted What the Committee Found continued… • Rarely is there a single factor that leads to hardship • Cancer patients face a perfect storm of… • Declining income • Lack of private insurance coverage • Lack of adequate EI benefits • Because benefits run out before treatment is finished or the person is not eligible for EI • Inability to hold a job during treatment or once treatment is finished • Time away from work utilizes all vacation and sick time

8. $ • Cancer drugs • Gas • Hotels • Meals • Parking • Child care • Housekeeping • Home care • Palliative care What the Committee Found continued… • Rising expenses • Drug and medical equipment costs are not covered by some provincial programs • Medical travel costs including fuel, accommodation, meals and vehicle maintenance • High parking rates at treatment centres • Additional living costs including child care, home care and housekeeping

9. Financial Risk Greater for Some • The financial impact of cancer affects more than just patients • Cancer affects children, spouses and parents • At risk groups include: • Lower income Canadians • Seniors, immigrant groups and First Nations and Inuit People • Young adults with cancer • People with sporadic employment or self employed • People with no or limited private health insurance • People with caregiver or parental responsibilities • People who are receiving multiple forms of treatment • People with few or no social support systems

10. The Issues – Lack of Awareness • There is little awareness of the potential financial challenges associated with a cancer diagnosis by: • Health care providers • Cancer patients and their families • Employers • Financial advisers and planners • The general public

11. “It’s a very scary feeling. It’s like I have the letter ‘C’ stamped on my head. I am not insurable. I can’t get insurance – not just life insurance but insurance for buying a mortgage. ” - Vanessa Kunderman, Financial planner, cancer survivor

12. The Issues – Loss of Income • Affects cancer patients and primary caregiver – impact may be greater for those still working • Loss of wages was a greater contributor than out-of-pocket expenses • 22% of caregivers missed one or more months of work • 69% of caregivers missed work – most 41% relied on personal savings while providing care • There are about five million Canadians providing care for a family member with a long-term health problem

13. The Issues – Loss of Income continued… • Among industrialized countries, Canada lags behind on sickness benefits • Only Saskatchewan, Quebec and federally regulated industries offer job protection for leaves of more than 12 days • A 2005 evaluation of Canada’s Compassionate Care Benefit shows it is not living up to its potential because its criteria is too narrow

14. The Issues – High Drug Costs • Private insurance helps defray risk of financial burden but not all Canadians have access • Insurance covers 90% of prescription drug and 67% of medical device costs • But 1 in 12 families pay more than 3% of their net household income for drugs • New cancer drugs are more expensive – $65,000 per course – and are taken orally, shifting the burden to individuals in provinces east of Manitoba • Studies show breast, lung, colorectal and prostate cancer patients without private insurance considered the cost of drugs when managing treatment and illness

15. The Issues – Cost of Transportation and Accommodation • 1 in 5 Canadians living in rural areas most at risk • 1 in 4 rural cancer patients in Newfoundland spent more than $1,000 on travel expenses related to treatment • In Ontario, parents whose children had cancer spent up to $47,470 on travel costs • 1 in 4 breast, lung, prostate and colon cancers in Northern Ontario lost time from work because of travel • In British Columbia rural cancer patients considered forgoing treatment or a more radical form of treatment in order to reduce travel-related costs

16. “We should not be penalized because we don’t live in the city. There isn’t an agency where you call someone up for farm help. It just doesn’t work that way.” - Pam Robbins, Caregiver, mother and farmer in southwest Manitoba

17. The Issues – Challenges Faced by First Nations, Inuit and Métis • Average family income is lower • 2006 study showed mean incomes of Métis population was $5,000 less than non-aboriginal population • Métis and non-status Indians are more likely to be underinsured if insured at all

18. The Issues – Lack of Person-centred Rehabilitation Focus in Manitoba • Some health care professionals believe more robust rehabilitation programs would improve recovery and help cancer patients return to work sooner • An interdisciplinary approach • In addition to physical therapy, other disciplines from counselling and career planning to benefits planning be incorporated to reduce stress and improve recovery • This is particularly true among adolescents and young adults

19. The Issues – Lack of Affordable Child Care • Cancer patients often need access to short-term child care but access to this kind of service is patchy at best • Key informants reported that child care and housekeeping added to the financial burden most when: • One parent is working and the other has cancer • The parent with cancer must attend treatments, monitoring and other medical appointments • The person with cancer is a single parent • There is more than one child in the family • There are no supporting relatives or friends to help with childcare

20. The Issues – Lack of Access to Home Care Resources • Research shows that: • Caregivers provide between $6 billion and $9 billion a year in unpaid care • Caregivers contribute up to half the home care costs • Four in ten caregivers use personal savings while providing care • Key informants – particularly those in rural Manitoba – reported that the lack of home care resources contributed to their financial burden

21. The Issues – Lack of Hospice and Palliative Care Beds • The availability, level of care and services provided to Manitobans seeking palliative and hospice care is inconsistent in Manitoba • Adds to financial and emotional burden • Leaves caregivers and families unsupported

22. “The first step is to raise awareness and build understanding.  We hope this is the start of a national discussion that will give cancer patients a voice and build consensus around solutions.  The bottom line is that Canadians should not be forced to deal with a financial crisis at the same time as they are dealing with a medical crisis.” - Pam King, CCAN Manitoba

23. MORE INCOME STABILITY FOR FAMILIES DEALING WITH CANCER Priorities for Change • Every segment of society – from individuals and organizations to provincial and federal governments should play a role in balancing this burden Cancer Drugs Medical Supplies Companion Costs Home Care Child Care Hotels Vehicle Repairs Meals Fuel Parking

24. Priorities for Change • The need to make improvements to income stability programs • Stop the offloading of drug and medical costs to patients • Need to reduce transportation and accommodation costs

25. Call for Action • Federal and provincial governments should provide all cancer treatment and support drugs at no cost to cancer patients • Government support programs and employment insurance should better protect cancer patients and caregivers • Provinces should work together to reduce drug costs and make them more accessible across the country • Develop a public/private/charitable partnership to reduce travel costs for cancer patients

26. Questions?