Young Adult Cancer Survivors Hard Hit by Treatment Costs

Roxanne Nelson, RN, BSN


March 31, 2016

Study Quantifies Financial Burden on Young Adult Survivors

A related article[8] published in Cancer Medicine echoed Baker and colleagues' findings of age-specific financial toxicity among young adult survivors of cancer.

The study was conducted by the Samfund, a national nonprofit organization that provides financial support to cancer survivors between 21 and 39 years of age who live in the United States and have completed their active treatment. Between 2007 and 2013, the Samfund awarded approximately 100-120 grants annually (579 grants total), ranging from $200 to $10,000.

To quantify the financial burden of cancer in young adult survivors, the Samfund conducted a retrospective analysis using data collected from 334 of the applicants who consented to participate in the study.

Applicants are permitted up to three requests and are typically funded for one or two of them. The top three requests that were made during this time frame were for medical/insurance (35%), which include payments on current or residual medical bills, insurance premiums, prescription copays, dental expenses, or cosmetic/reconstruction procedures; rent/mortgage (25%), which includes living expenses and utilities; and health/wellness (20%), which pertains to physical therapy, mental health payments, gym memberships, yoga, or alternative healing modalities.

Because no control group was available to compare the financial status of young adult survivors with that of healthy peers, the authors used data from the Medical Expenditure Panel Survey (MEPS) and US Census data on age-matched individuals.

Young adult survivors had markedly lower median income, greater out-of-pocket expenses, and lower net worth than the age-matched individuals.

The largest differences between the study group and the general population was in the area of net worth (defined as the value of all things owned by an individual, such as home, car, cash, and any investments, less any debts). According to US Census data, the mean net worth of young adults was $68,479.00 in assets—but conversely, young adult survivors who applied for a grant had mean negative net worth of $35,009.41, in debt.

The mean total liabilities among Samfund grant recipients was $47,368.10, but liabilities were significantly higher in the older group of patients (30-39 years) than the younger group (21-29 years): $59,012.16 vs $37,760.16, respectively.

Overall, the young adult survivors had markedly lower median income, greater out-of-pocket expenses, and lower net worth than the age-matched individuals who responded to the 2011 and 2013 US Census.

Medical Care Is Another Expense That Patients Cannot Afford

Samfund grant recipients, in their application essays, reported negative financial sequelae related to cancer. One said, "When I became sick, my working hours were reduced." Another reported that there was "just nothing left after I've paid my normal-person bills of rent, car payments, grocery bills, school loans, etc., so the bills have accumulated."

I am not able to go to my PT, primary care or radiation oncology visits...because I can't have yet another expense.

One survivor noted that follow-up care had become unaffordable: "I am not able to go to my PT [physical therapy], primary care, or radiation oncology visits...because I can't have yet another expense."

In the sample of grant recipients from 2013, 14 of the survivors (13.5%) mentioned having to forgo medical follow-up appointments or skipping/reducing their medications as a result of their financial situation.

As in Dr Baker's study, the Samfund data were collected before the ACA mandate in 2014—"[a]lthough obviously there is overlap from when it was signed into law in 2010," commented lead author Michelle Landwehr, MPH, chief operating officer at the Samfund. "We did not measure the specific impact of the ACA in this study sample," said Ms Landwehr, "though it's a trend that we hope to examine down the road, now that coverage has been expanded for a couple of years, and now that we've added more health insurance-specific questions to our data collection instruments."

Anecdotally, Ms Landwehr commented that Samfund has seen many more people who were able to obtain insurance coverage for themselves or were able to stay on a parent's plan until age 26. But she also noted that the ACA is far from perfect. "Many young adults end up picking the plan with the lowest monthly premium, only to get clobbered by high deductibles and out-of-pocket expenses," Ms Landwehr pointed out. "We see far fewer patients who were completely uninsured if they went through treatment in the past couple of years, but we still have a long way to go."

We hear from survivors who are too ashamed of their balances with hospitals to go in for follow-up care.

Conversations between physicians and patients about the cost of cancer care are increasing, but not every patient who wishes to discuss cost gets to do so. Ms Landwehr sees such discussions as appropriate—not only during active treatment, but also during the critical periods of follow-up and monitoring.

"We hear from survivors who are too ashamed of their balances with hospitals to go in for follow-up care, or who cannot afford the copays or coinsurance, costs of testing, or prescriptions necessary to keep them healthy," she said. "This is one of the reasons many have posited that the survival rates for this population have not improved in decades. Communication with physicians beyond active treatment is one important piece of the solution to this complex problem."

Dr Baker has no relevant financial relationships. Ms Landwehr is chief operating officer of the Samfund.


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