M

aria (not her real name) was terrified when her 5-year-old son, Rafe, was diagnosed with a rare form of cancer. She worried about his chances of survival and the side effects of the proposed treatment. What she didn’t anticipate was the financial toll his illness would take on the family. As Rafe’s medical needs intensified, caring for him became all-consuming and Maria quit her job. Although her husband was still employed, the family’s income fell to half of what it had been, and they were faced with mounting medical bills on top of the normal day-to-day expenses like groceries and gas.

The financial stress ramped up quickly. Months into Rafe’s treatment, with the family’s savings obliterated, they fell behind on mortgage and utility payments. Neighbors held a fundraising drive, gathering nearly $10,000, but by then the bills were so great that the money was gone within a week. Then the power company came to shut off the electricity. By this time, Rafe was on a chemotherapy infusion pump, and the backup batteries would last only a few hours. Where to turn? What to do?

We heard about Maria’s situation and similar crises at a recent retreat of Family Reach, a national nonprofit dedicated to providing assistance to families who have fallen into severe financial distress after a family member was diagnosed with cancer. Horrific stories like Maria’s are becoming more common as the cost of treating cancer and caring for people with it grows more expensive. There is no silver bullet, but measures that promote better cost management of treatment and well-targeted financial assistance could not only relieve financial distress but also produce better outcomes and improved quality of life.

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The National Cancer Institute advises physicians and patients to understand that cancer’s financial impact affects both family budgets and patients’ health. According to the institute, when a loved one develops cancer, the family’s risk of significant financial hardship becomes startlingly high:

  • Between 33 percent and 80 percent of cancer survivors exhaust their savings to finance medical expenses.
  • Up to 34 percent borrow money from friends or family to pay for care.
  • For those who fall into debt, the level of debt is substantial. In a study of colon cancer survivors in Washington state, the mean debt was $26,860.
  • Bankruptcy rates among cancer survivors are 260 percent higher than among similar households without cancer.

The problem of paying for cancer care is so vast that it has a name, financial toxicity, representing the “other” toxic side effect of cancer treatment. Patients who get into financial difficulty suffer high rates of emotional distress and lower quality of life. In a study we conducted with several colleagues, cancer patients who filed for bankruptcy had a 79 percent higher mortality rate compared to those who had the same cancer and did not file for bankruptcy.

With the revelations of significant problems with our health care system, it is tempting to point to a single group for blame. In reality, the problem appears to be quite complex. Rapidly rising drug and hospital costs, relatively weak insurance coverage, uneven and inadequate sick leave policies of most employers, and the generally poor financial state of many families in the United States all contribute to the problem. As a result, addressing financial toxicity will require tackling multiple issues simultaneously.

As part of the cancer moonshot initiative launched by Vice President Joe Biden, Family Reach has launched the Financial Treatment Project. It takes a multiple-pronged approach to addressing the financial health of patients and their families. Family Reach recently joined with our organization, the Hutchinson Institute for Cancer Outcomes Research, and Tufts Medical Center in Boston to measure the impact of the program on patients’ financial health and medical outcomes.

We hope to find simple, nonjudgmental ways to identify when the family of a newly diagnosed cancer patient faces a high likelihood of falling into financial distress. We will also evaluate the different ways to address the problem once a high-risk case is identified, ranging from bringing in financial counselors to tapping pharmaceutical company patient assistance programs to signing up uninsured patients for the Affordable Care Act.

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One option to help patients burdened by financial toxicity is to create a program like Social Security Disability Insurance or unemployment insurance that serves those least equipped to endure financial hardship. It would kick in at the onset of a major cancer diagnosis and provide cash assistance for a defined period. This would go beyond the cost of care, as many families say that loss of income plus out-of-pocket costs for transportation, childcare, and caregiving are even bigger burdens than the copays.

Another option aims to encourage cost-saving treatments — ones supported by evidence — to achieve the same outcomes. We should adopt policies that eliminate out-of-pocket spending for newly diagnosed cancer patients provided that they and their doctors agree to follow guideline-recommended treatment plans. “For many cancers, guidelines include options that are considered equivalent therapeutically, yet the costs of the treatments might vary by fiftyfold or more,” said the National Cancer Institute.

The status quo is not acceptable. The number of Americans diagnosed with cancer is projected to rise nearly 75 percent between now and 2030. A focused effort to address the all-too-common problem of financial toxicity could help prevent at least some of the suffering that invariably comes with a cancer diagnosis.

Scott D. Ramsey, MD, is the director of the Hutchinson Institute for Cancer Outcomes Research in Seattle. Health economist Veena Shankaran, MD, is a medical oncologist and an associate member of the Hutchinson Institute for Cancer Outcomes Research.

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  • This is an important story and a hugely important issue. However, I am struck by the range of the quoted statistic, “Between 33 percent and 80 percent of cancer survivors exhaust their savings to finance medical expenses.” What is the source?

  • If this is a serious issue — it needs serious study by those with actual experience and education in accounting, finance and economics.

    That is because previously, so-called ” Harvard experts” proclaimed similar results. And were quickly questioned about their competence —

    http://www.theatlantic.com/business/archive/2009/06/elizabeth-warren-and-the-terrible-horrible-no-good-very-bad-utterly-misleading-bankruptcy-study/18826/

    ” .. Yet upon closer examination, it turns out that it is not just wrong, but actively, aggressively wrong. Warren and her co-authors have obscured important and obvious facts that call the integrity of the work into serious question ..”

    Serious problems require experts with education and experience. Not politicians and phonies.

  • I don’t know if the authors realize it but the financial program they listed to help does not help adults with kids older than 17. If the adult with no kids under 18 is the one with cancer they have to 30 or under. So yet again many adults are left out of financial assistance programs. Nearly all of the programs in this country focus on children with cancer or parents with cancer who have young children. Cancer toxicity affects many people with cancer who are outside of the guidelines for help in this country and apparently few care about that.

    • Thank you for the comment. Our research (and partnership with Family Reach) is focused on strategies to deliver financial assistance and financial navigation to adults with cancer. We agree that financial toxicity can affect households of individuals with cancer, regardless of age.

      Veena Shankaran, MD MS
      Associate Professor, Medical Oncology
      University of Washington
      Seattle Cancer Care Alliance
      Fred Hutchinson Cancer Research Center

  • I didn’t notice in the article if the parents of Rafe had health insurance. Were these financial hardships not only because of the loss of the income of one spouse, but even WITH health insurance? I would bet so.

  • I might as well live in a least developed nation with respect to health care. I live in a state that did not expand medicaid. Got fired from my job for having 2 cancers in one year (ironically after I was done with chemo – I was “too expensive” for their insurance). Had to work full time through chemo as I had no sick days or vacation days and could only miss 2 days or I’d be fired. Finally under ADA I was allowed to miss the two days in a row for chemo but had to put in my 40 with 13 hours days immediately there after, sometimes having to come to work from chemo.

    Eventually I had to choose between rent and health insurance (currently $957/mo, in January $1116/mo and the out of pocket/deductible went from $5000 to $6000). I was homeless for 19 months and finally got into HUD housing but come January that likely will be too expensive too. I am running out of things to sell and all the good street corners around here already have aggressive beggars standing there.

    I struggle to keep up with the payments to the NCI designated cancer center since I have a cancer with no cure but a longer life span this matters. If I fall behind they won’t see me anymore until I catch up – been there done that once already and they cancelled a surgery. I am out of state so no poverty help there.

    My state has no decent cancer centers and none are NCI ones. I skip some drugs because I can’t afford $200 co-pays, don’t go to the doctor unless I am desperate… Started a gofundme which kept me in health insurance for a year (I only used it for health care even when I was homeless) but that is more or less dead in the water due to donor fatigue (although it is still up and open and very occasionally someone who donated 2 years ago will donate again) and I have no clue how to get it to go viral since I am not a cute kid with cancer or the young breadwinner… I’m just one of many way too common stories of doing the cancer gig as a single parent of initially a teen…

    Made a comment to my oncologist that maybe it was a good thing this one had no cure (I have had 3 major cancers in 7 years) since I didn’t have enough money to retire. He did not think that was funny. But seriously I look at the options at this point… and don’t see much in the way of options. Due to the gap in my vitae I am having trouble finding anything other than part time jobs and of course at the back of my mind is when will this shoe drop again and we start the chemo gig all over again (having B symptoms but my nodes are not big enough to call, I am really tired of night sweats and broken sleep due to them)…

    I was not poor prior to this; I was middle class and careful with my money (took me 2 years of this mess to run out of money). I am poor now. I guess one way to get rid of poverty is to kill us due to lack of or inferior medical care because we can’t pay. I doubt our lawmakers have any clue what it is like to have to decide which bill you will pay and can that include meds, doctor visits, rent or health insurance – can’t do both… Or for that matter how many of them have lived in a moldy shed with a leaking roof and holes in the walls through the (fortunately southern) winter? The presumption is that we are lazy bums who refuse to work, wanting to live, and as my governor put it (when explaining his reasons for not expanding medicaid), he didn’t want any more people living on the ‘welfare planation’. Nope I’d love to have a full time job. Preferably with benefits. While I can eat due to food stamps, the life style that goes with that sucks big time. And I will likely be stuck with it for the rest of my life as I see no way out, no way to contribute to retirement accounts..

    My hope for any of this to be solved (politically) any time soon is not high. Heck we can’t even get the states that didn’t expand medicaid, mine included, consider that medical care for everyone even matters. Likely the lot of them have had an empathy lobotomy.

    And of course, I am just one of likely thousands…and there is no end in sight.

  • So badly needed. When my brother was first diagnosed with a large brain tumor, the first order of business was to remove the tumor, the second was to evaluate what that tumor indicated and what future treatment would require. My brother’s cancer was determined to have spread from his lungs: there were two smaller tumors in his brain, several scattered in his lungs, and, of course, lymph node involvement. It was not an easy decision for my brother to choose treatment, knowing the chances it would both bankrupt his family and fail were high. He chose treatment: he was still under 60, relatively healthy in other ways, and had a good support system. Plus he lived near some of the best cancer centers in the country. Yet the financial realities loomed. He asked, “what do I do- give up so my family will have a home when I die?” He has a disabled daughter who needs constant care and supervision, and her medical needs will be life-long. I think it was his love for both his family, and his love of life itself that influenced his decision to go full-bore for treatment. So far, so good. Over three years later, he is doing better than any of his doctors have ever seen for his type of cancer. He is breaking new ground, and has grown as a person facing the unknown. We are all tremendously grateful to still have him: he has given us a gift of his presence. State insurance programs, medical trials, and other help has made it possible for his family to retain their home, but things are always on the edge of collapse. It should not be this way. Not for cancer patients, and not for people with other kinds of debilitating diseases. No one should have to get to the point where they are having to come to poverty’s edge, and exhaust every dollar of savings before they can be eligible for the treatments that allow them to live meaningful lives, and, if it comes to that, die dignified deaths, knowing they have done their best, and knowing their families have the resources to continue.

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