The Samfund conducted a preliminary investigation into the impact of the Affordable Care Act on young adult cancer survivors’ medical cost burden and access to health care.
Although the conversation about cancer and financial toxicity has finally gained traction in recent years,1 there is still a dearth of coverage in oncology literature on the population arguably hit hardest: young adult cancer survivors (YAs). In 15 years of providing direct financial assistance to the YA population, The Samfund has seen many ways in which financial toxicity manifests: forgoing follow-up care, making difficult choices between paying for rent or for prescriptions, and/or facing bankruptcy at an early age.
Ultimately, the high cost of healthcare affects YAs in unique ways due to their age and life stage (lack of financial stability before cancer, limited employment history/potential, etc).
In 2016, we published a retrospective analysis2 of the financial impact of cancer on young adults, looking at data just up to 2013, before the Affordable Care Act (ACA) took full effect. The law made it possible for some applicants to purchase coverage through the marketplace, with the first plans taking effect January 1, 2014. At that time, given the uncertainty of the ACA’s future, we decided to analyze a snapshot of our applicant population’s medical expenses and overall medical and credit card debt both before and after the ACA went into effect. We also looked at grant recipients’ access to health care post ACA to determine the law’s impact on this population thus far.
The Samfund looked at applicant data from 2007 to 2017 to identify differences that may be apparent pre and post ACA. Grant applicants—who today must be aged 21 to 39 years (until 2013, the eligible age range was 17-35), finished with active treatment, and US residents—were asked a series of in-depth questions about their finances. Of the applicants, 361 who sought assistance between 2007 and 2013, as well as 873 who sought help from 2014 to 2017, consented to have their data analyzed. Those who receive funding were subsequently asked to complete an onboarding survey that covered access to care and psychosocial measures. Follow-up surveys at 6, 12, and 24 months post funding contain similar measures; of note, recipients were asked, “During the past 6 months, did you have access to needed health care, including doctor visits, prescription medication, or diagnostic tests?” If the response was negative, respondents were prompted to answer how various factors, including adequate insurance, affected their ability to access this care. (This survey is still in use.)
As seen in Table 1, the highest percentage of applicants from 2014 to 2017 (44.2%) received coverage through an employer-sponsored plan (through either through their own job or a spouse’s). The next largest percentage, 32.7%, are covered via a public plan (primarily Medicaid), and 13.2% are covered through a private plan or a plan obtained through the marketplace. Just 2.6% report having no coverage. When asked whether their premiums are deducted from their paycheck, 44.5% indicated yes, whereas 55.5% indicated no. The mean pretax premium deduction among 2014-2017 applicants with insurance coverage was $143.00, and the mean monthly out-of-pocket premium cost (for those who did not have premiums taken out of a paycheck) was $303.12. The mean age of all applicants and recipients is 30, and nearly 75% of recipients identify as female (applicants are not asked about their gender identity).
We began asking about type of health insurance coverage post ACA, in 2014, so we have no earlier data to compare for type of coverage or monthly premium costs. However, as seen in Table 2, we did examine mean monthly medical expenses, overall medical debt, and overall credit card debt before and after ACA (as a general indicator of financial health). Although 2014-2017 grant applicants reported equivalent average monthly medical expenses (likely because we did not ask about health insurance costs separately prior to ACA, and applicants included premiums as part of their monthly medical expenses), they reported higher overall medical debt and higher credit card debt. Of note, from applicant essays, we often see that that medical debt has been paid on credit cards to avoid collections (although credit cards are also used for travel, treatment, and living expenses).
In recent cohorts of onboarding and follow-up surveys (N = 363 surveys, 245 recipients from 2015 onward), our recipients have reported that they have high access to healthcare even at baseline; in our most recent 2 cohorts of recipients, 95% reported access to the healthcare they needed in the past 6 months. At follow-up, the results were similarly high—90% to 92% of recipients reported similar access. Of those who did not feel they had adequate access to healthcare in the last 6 months, between 75% and 100% reported that lack of health insurance contributed at least somewhat to this situation.
Qualitatively, reports of YAs’ experiences securing coverage post ACA are still very mixed though seem to skew toward the positive. Some recipients report that they are able to get the coverage they need, whereas others feel they have been given the runaround when trying to get on a plan. For some, the ACA has made all the difference with respect to their treatment. Some examples:
“Because of the ACA, I was able to stay on my stepfather’s insurance for 3 years longer than I otherwise would have been able to, which covered my cancer treatment. The ACA was a true lifesaver.” — Lauren M.
Others had horror stories of having to switch facilities midway through treatment, with some abandoning their medical teams due to loss of coverage:
“I relapsed in November 2015, and I had a PPO [preferred provider organization] insurance plan at the time through the ACA marketplace. I started my treatment in [Hospital 1] at the time, and the plan was to do a stem cell transplant. At the start of 2016, all marketplace plans no longer [offered] PPO plans, so I was forced to get an HMO [health maintenance organization] plan, which made that hospital out-of-network for me.…Fortunately, they came up with a compromise to give me a grandfathered plan so I [could] continue my transplant at [Hospital 1], but it delayed my treatment for 2 weeks.…After my transplant, they didn’t tell me that they made my hospital out-of-network for me again. [I’d] already done scans and tests that were billed out-of-network, and I ended up with a bill of around $40,000.” —Carlo L.
Another recipient commented on the inconsistencies in the marketplace:
“It all depends on the state you live in! My fiancée used it to get healthcare, which was free for her income range. Depending on how your state responded to [ACA], you may end up getting a great deal, or get nothing at all.”
For others, even with coverage, it seems that the process never runs smoothly:
“I have used healthcare from the marketplace for the past 2 years. It has been a tremendous help for me. I wouldn't have had any way to afford to see doctors without it. The prices on the plans have fluctuated exponentially each year, causing me to have to switch insurance plans and all my doctors 1 of those years, which was frustrating—but nonetheless, I am able to see doctors and get tests done, which has been crucial to my peace of mind.”
Although many cancer survivors in the general population may face challenges when seeking health insurance coverage and health care, they are often exacerbated for young adults due to their relative inexperience with the health insurance market, as well as what can be a confusing marketplace site. Though not statistically significant, the mean amount of overall medical debt increased substantially in the post-ACA group, suggesting a possible overall increase in medical cost burden for YAs. Additionally, we have found that YAs in particular may be more likely to choose a plan with the lowest monthly premium without fully understanding the total costs for the year. As a result, they often choose plans that cost more than they had anticipated (due to high deductibles) and/or offer paltry coverage that affects access to follow-up care. Samfund grant recipients commonly report difficulties in accessing adequate in-network care under their insurance plan or the need to switch healthcare providers during treatment due to changes in their coverage, as described above.
Though recipients broadly reported adequate access to health insurance coverage despite the aforementioned logistical challenges, in a pre-ACA study with a broader target population, between 33% and 48% of YAs were forgoing necessary follow-up care, regardless of health insurance status.3 Clearly, further analysis in the post-ACA era is needed to better assess the relationship between health insurance coverage and follow-up care.
Though we consider it worthwhile to examine our applicant and recipient data, we do recognize several inherent limitations: namely, that we did not track health insurance coverage or specific premium or out-of-pocket costs prior to 2014 and that applicants who approach the Samfund for funding are facing extreme financial hardship, so they may not be representative of the YA population as a whole. We are also looking at relatively small cohorts for follow-up data and may suffer from response bias—those recipients faring better overall may be more likely to complete follow-up surveys. Lastly, we do receive repeat applicants, but because their financial situations may have changed over time, we included them in this preliminary analysis.
From this snapshot of YAs contending with financial toxicity, we see 2 stories emerging: 1 of high access to care, and a second of overall increased costs post treatment. More research involving a comparison of coverage and cost burdens in YAs is warranted. Some of these challenges can be remedied with education; to that end, The Samfund, in partnership with Triage Cancer, launched CancerFinances.org to provide guidance around issues common to young adults with a cancer history. The health insurance module was the first topic introduced and remains a great resource for individuals seeking information about their health insurance options before selecting a plan. Although coverage may be improving/increasing, at least for now, there is still much work to be done to mitigate the debilitating financial aftereffects of cancer in the young adult population.
Michelle S. Landwehr, MPH, is the chief operating officer of The Samfund and has been involved with the organization since its inception. She oversees all program and evaluation activities and is grateful for the opportunity to work with the young adult survivor community. She holds a bachelor’s degree from Brandeis University in Waltham, Massachusetts, and a master of public health from Columbia University.Samantha E. Watson, MBA, is a 2-time young adult cancer survivor. She received a diagnosis of Ewing sarcoma in December 1999 and of secondary myelodysplastic syndrome in April 2001. She cofounded The Samfund in 2003 after recognizing a void in programs and services tailored specifically for young adult cancer survivors after treatment. She is proud to be an active member of the cancer community and an advocate for young adult survivors throughout the country. She holds a bachelor’s degree from Brandeis University in Waltham, Massachusetts, and a master of business administration in mission-driven management from the Heller School for Social Policy and Management at Brandeis.
Maia Dolphin-Krute, BFA, is the grants assistant at The Samfund and helps applicants through every step of the process. As a chronically ill young adult, she is happy to support other young adults and The Samfund community. She is a graduate of Tufts University and the School of the Museum of Fine Arts in Boston, Massachusetts, and is the author of 2 recent books on illness and disability studies.
Funding sources: None.
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