Brandon Hayes-Lattin, MD, FACP
Adolescent and Young Adult Oncology explores the unique physical, psychosocial, social, emotional, sexual, and financial challenges adolescents and young adults with cancer face. The column is guest edited by Brandon Hayes-Lattin, MD, FACP, Associate Professor of Medicine and Medical Director of the Adolescent and Young Adult Oncology Program at the Knight Cancer Institute at Oregon Health and Science University in Portland, Oregon.
A pair of studies showcased the potentially devastating long-term health and financial consequences cancer has on adult survivors of childhood cancer compared with other adults, as well as survival disparities based on health insurance status.1,2 Despite increasing survival rates among the more than 70,000 adolescents and young adults (AYA) diagnosed with cancer each year, 3 largely due to advances in treatment, not all AYAs are benefiting equally from improvements in care. According to the National Institutes of Health, there are currently over 400,000 survivors of childhood cancers.4
One study investigating the association of sociodemographic factors, including race/ethnicity, neighborhood socioeconomic status, and health insurance, on survival for AYAs with invasive cancer found that lacking or having public insurance was linked with a greater risk of death compared with survivors with private or military insurance.1 However, the study results also showed a greater financial burden associated with a cancer diagnosis for those who are relatively young, of nonwhite race/ethnicity, or who have lower socioeconomic status, regardless of insurance status.
And that financial burden often carries over into adulthood, frequently leading not to just greater financial problems as AYAs age, but to greater health problems as well. A study published in the Journal of Clinical Oncology evaluating income level and out-of-pocket health-care costs of childhood survivors of cancer compared with a sibling comparison group found that 10% of the survivors had a higher level of out-of-pocket health costs, defined as 10% or more of household income, than siblings reporting higher out-of-pocket costs (3%).2 Equally troubling is the measures survivors took to offset those higher health-care costs, including forgoing treatments, tests, or follow-up doctor visits; postponing or delaying medical care; and reducing their dosage of prescription medicines, potentially affecting health outcomes.2
Young adults represent 8% of all new cancer diagnoses annually in the United States, but there is no financial safety net for them when they do.— Kate Yglesias Houghton
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The ASCO Post talked with Kate Yglesias Houghton, a young adult survivor of cancer and President and Chief Executive Officer of Critical Mass: The Young Adult Cancer Alliance (criticalmass.org), a public policy advocacy organization of survivors, providers, and other health-care stakeholders, about the long-term health and financial ramifications a cancer diagnosis has on survivors of childhood cancers and what Critical Mass and its alliances are doing to reduce inequities in care and financial hardship for these survivors.
Challenge of Financial Stability
How does a cancer diagnosis in young adulthood potentially impede lifelong financial stability?
When I was diagnosed with acute myeloid leukemia in 2012, I had only been at my place of employment for 10 months, so I did not qualify for the protections under the Family and Medical Leave Act, which entitles eligible employees of covered employers to take unpaid, job-protected leave for qualified medical and family reasons. I had a great employer, solid health insurance, and incredible family support, so I didn’t suffer any long-term financial hardship from my cancer diagnosis. But many companies cannot offer paid leave to employees. And in the individual marketplace, those without employer-backed care may choose inadequate insurance coverage at lower premiums but with higher out-of-pocket costs. This typically affects people with low income and young Americans with little access to capital or credit.
Young adults starting out in a career are also less likely to have job security and tenure, so there is a fear about losing income as well as employer-based health insurance after a cancer diagnosis—one that pediatric and older adult survivors do not necessarily face. For young adults, taking time off from work, even for cancer treatment, may put their employment—and future income—in further jeopardy.
One solution is for oncologists to talk with their young adult patients about their treatment protocol and what it does to their work schedule to see if a compromise can be reached that doesn’t put patients’ health or employment at risk. For example, some cancer centers have extended infusion hours during evenings and on weekends, allowing patients to continue to work while undergoing treatment.
A cancer diagnosis can threaten job promotions, leave survivors with unexplained holes in their resumes, and make them less attractive to employers. There are just too many ways a cancer diagnosis at this stage of career development can put young survivors at a financial disadvantage, and some are never able to recover.
Having a specific cancer type during young adulthood, including lymphoma, leukemia, and thyroid cancer, has also been shown to increase the risk of bankruptcy in this age group compared with older adults with these cancers.5 Young adult survivors with financial worries also report more bouts of depression, stress, and anxiety, which negatively compound their quality of life.
Unfortunately, I know this too well. Two years after my cancer diagnosis, I was diagnosed with posttraumatic stress disorder. Some days, managing my posttraumatic stress disorder at work felt harder and more isolating than managing my cancer diagnosis.
Danger of Low-Cost Health Insurance
Recent changes to the Patient Protection and Affordable Care Act (ACA) have resulted in short-term, low-cost insurance plans coming onto the marketplace; they charge lower premiums but carry higher deductibles and out-of-pocket costs. What are some of the financial and health-care concerns with this type of insurance plan?
The major concern is that they do not include enough consumer protections, which can ultimately drive up health-care costs for individuals. For example, low-cost plans do not cover many medical services, such as mental health care, maternity care, or prescription drugs, and they are exempt from covering people with preexisting conditions.
Losing fertility is not the same as losing your hair. It is one of the most permanent and devastating effects cancer can have on the life of a young person diagnosed with the disease.— Kate Yglesias Houghton
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Consumers think they are getting a great deal with these plans because they cost so much less—as little as $25 a month in some parts of the country, compared with an average of almost $400 for an unsubsidized policy that includes ACA requirements—but they are not. These plans can also charge people more based on their medical history, age, or gender, and they have lower lifetime limits on the amount of care that is covered.
If you have an expensive disease like cancer, these low-cost insurance plans will not provide adequate health-care coverage.
Coping With Lifelong Economic Disparity
What is the lifelong economic disparity for young adult survivors compared with older survivors or young adults in the general population?
We have found in our research that between lost wages and additional medical expenses, young adult survivors of cancer can expect to lose about $10,000 a year. And that doesn’t take into account things like student loan debt, which right now cannot be deferred during cancer treatment. However, a provision in the 2019 Defense, Labor, Health and Human Services, Education, and Related Agencies Appropriations Act, HR2976, Deferment for Active Cancer Treatment Act 2017, which recently passed in Congress, will allow patients receiving cancer treatment to defer payment on their public student loans without accruing interest for up to 6 months after treatment is completed.
A retrospective analysis by The Samfund of the financial impact of cancer on its young adult grant recipients found that the average net worth of those who received grants was negative $35,000, compared with a $68,000 average net worth for young adults in the general population.6
There is an assumption in our country that young people don’t get sick, and, of course, that is not true. Young adults represent 8% of all new cancer diagnoses annually in the United States,7 but there is no financial safety net for them when they do.
Preserving Fertility for Young Adult Survivors
Please talk about how Critical Mass intends to improve health care for AYA survivors.
One of the major policy changes we are focusing on this year is to expand fertility coverage nationwide for young adult survivors of cancer. Currently, fertility preservation, other than radiation shielding and ovarian transposition, is not covered by health insurance plans or is restricted by state laws.
Payers do not cover damage caused by surgery, chemotherapy, or radiation therapy to the reproductive system the way they do for damage to the heart, liver, or other vital organs from cancer treatments, but they should. Losing fertility is not the same as losing your hair. You can’t just wait for your fertility to come back. Once it is lost to treatment, that’s it, and it is one of the most permanent and devastating effects cancer can have on the life of a young person diagnosed with the disease.
In partnership with the Alliance for Fertility Preservation and The Ulman Cancer Fund for Young Adults, the young adult cancer movement has been active in more than a dozen states to sign fertility preservation coverage into law. In 2017, Rhode Island and Connecticut passed legislation to extend fertility preservation coverage. Illinois (due largely to the work of the Oncofertility Consortium at Northwestern University), Maryland, and Delaware, among other states, have also passed similar legislation.
Another major focus of ours this past year was the passage of HR 2976, Deferment for Active Cancer Treatment Act of 2017, which I mentioned previously. This is the first piece of legislation written to remove a unique burden faced by young adults after a cancer diagnosis.
Ultimately, our mission is to eliminate all barriers faced by Americans between the ages of 15 and 39 diagnosed with cancer. This means creating the appropriate infrastructure to develop and sustain AYA oncology as a recognized field; reframing survivorship to go beyond 5-year survival rates; and acknowledging the long-term, late effects—financial, physical, and emotional—cancer has on these survivors.
We have a big task ahead, but I’m confident that the young adult cancer movement has what it takes to get it done.
DISCLOSURE: Ms. Houghton reported no conflicts of interest.
1. DeRouen MC, Parsons HM, Kent EE, et al: Sociodemographic disparities in survival for adolescents and young adults with cancer differ by health insurance status. Cancer Causes Control 28:841-851, 2017.
2. Nipp RD, Kirchhoff AC, Fair D, et al: Financial burden in survivors of childhood cancer: A report from the Childhood Cancer Survivor Study. J Clin Oncol 35:3474-3481, 2017.
3. National Cancer Institute: Adolescents and young adults with cancer. Available at www.cancer.gov/types/aya. Accessed September 25, 2018.
4. National Cancer Institute: Childhood Cancer Survivor Study: An overview. Available at www.cancer.gov/types/childhood-cancers/ccss. Accessed September 25, 2018.
5. MacReady N: The climbing costs of cancer care. J Natl Cancer Inst 103:1433-1435, 2011.
6. Landwehr MS, Watson SE, Macpherson CF, et al: The cost of cancer: A retrospective analysis of the financial impact of cancer on young adults. Cancer Med 5:863-870, 2016.
7. Critical Mass. About: History. Available at www.criticalmass.org. Accessed October 1, 2018.