Although cancer in adolescents and young adults (AYAs), defined by the National Cancer Institute as those between the ages of 15 and 39, is relatively rare—in 2020 nearly 90,000 AYAs were diagnosed with cancer and about 9,300 died of the disease1—and 5-year relative survival rates are high, between 83% and 86%,1 they experience cancer and its treatment at a time of significant life-stage transition. And the physical, psychosocial, educational, and financial consequences can be long-lasting and even permanent.
Studies have showed that compared with young people who have no cancer history, AYA survivors have higher rates of chronic disease, disability, and poorer mental and physical health over their lifetime.2 These young adult survivors are also more likely to be uninsured or underinsured, skip care because of out-of-pocket costs—current estimates suggest that, on average, young adults spend an extra $3,170 per year in medical expenses than nonsurvivors3—go into debt, and file bankruptcy after a cancer diagnosis than older adult survivors.4 In addition, their lifetime earning capacity may also be severely reduced. According to a retrospective analysis of the financial impact of cancer on young adults, the average net worth of AYA survivors was $35,000 compared with $68,000 for young adults in the general population.5
“Involving an experienced social worker and/or financial counselor in AYAs’ care can help them tap into resources for financial support.”— David R. Freyer, DO, MS
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“In some ways, financial vulnerability and its consequences is a defining issue for AYAs. It encapsulates much of what is distinctive about this age group compared with older cancer survivors,” said David R. Freyer, DO, MS, Director, Survivorship and Supportive Care Program at Children’s Hospital Los Angeles; Co-Director of the AYA Cancer Program at the USC Norris Comprehensive Cancer Center; and Professor of Clinical Pediatrics, Medicine, and Population and Public Health Sciences at the Keck School of Medicine, University of Southern California.
During the 2021 ASCO Annual Meeting, Dr. Freyer moderated an educational symposium on Achieving Equity in Cancer Care for Adolescents and Young Adults, which featured a session on financial toxicity. In this interview with The ASCO Post, Dr. Freyer talked about the deep impact cancer has on young survivors’ financial well-being and long-term quality of life.
Understanding the Consequences of Financial Hardship After Cancer
A recent study of AYA survivors found that young adults experienced extreme financial hardship; they had problems paying their bills, endured emotional distress, and forgoed medical care because of cost.6 Please talk about why young survivors are vulnerable to such financial hardship after a cancer diagnosis and why they almost never catch up financially to their healthy peers.
In many ways, financial toxicity is a defining issue for AYAs with cancer, at least in the United States. One reason why financial toxicity is so great in this age group is because they come into the diagnosis of cancer already financially vulnerable and often already in financial distress, which is a reflection of their life stage. Many AYAs experience financial hardship even before they have had cancer.
Younger AYAs are at a point in life where they are graduating from high school, starting or finishing college, entering the workforce, and getting their first job. They are aiming for personal and financial independence, but they are not there yet. Older AYAs may be more established in their occupation but also may be settling down in a long-term relationship and considering having children, if they have not already had them.
Interestingly, older AYAs are increasingly having the challenge of caring for aging parents. And for many of these survivors, home ownership and building financial wealth are goals, but cancer often disrupts those plans.
In many instances, AYA survivors cannot finish their education, are delayed entering or reentering the workforce, sometimes get pushed off their career path, and experience limitations on their income earning status. From a health insurance perspective, despite important advances from the Affordable Care Act, AYAs—with or without cancer—remain the least insured segment of the population. When they do have insurance, it is often inadequate for accessing high-quality cancer care. Medical expenses that are not reimbursable is a huge issue, which adds to their increasing debt and financial insecurity. A cancer diagnosis at this stage in life sets everything back, and it is nearly impossible to catch up financially.
The impacts on their quality of life extend beyond their financial well-being and can lead to poor disease outcomes and increased risk for depression, anxiety, and distress.
Easing Patients’ Medical Financial Burden
In a study examining the medical financial hardship AYAs often face, the researchers concluded that health-care providers must recognize this inequity and its impact on survivors’ health and take steps to address the problem.6 What interventions can oncologists put in place to address these underlying causes of financial hardship and their impact on survivors’ health?
The answer is complicated. Some medical financial distress is within the control, or at least the sphere of influence, of the oncologist and oncology team, but much is not. We can start by being mindful throughout the cancer experience of the financial issues young adult patients face and incorporating that understanding in the treatment recommendations we make.
Here are some examples of helpful steps: determine whether a treatment can be administered in a patient’s local community or at home to reduce hospital time and traveling costs; be mindful of how treatment side effects, such as fatigue, may impact quality of life; and make patients aware of their employment rights, including unpaid leave under the Family and Medical Leave Act. Involving an experienced social worker and/or financial counselor in AYAs’ care can help them tap into resources for financial support, including income assistance and payments for rent, food, or transportation.
An overarching need is to reform our patchwork payer system, so cancer care is more accessible and seamless for our young adult patients. Although this is clearly not within our direct professional control, medical organizations, such as ASCO, can play a crucial advocacy role in reforming the country’s approach to paying for health care, which is dysfunctional and inadequate for many AYAs with cancer.
Is it appropriate for oncologists to bring up the cost of treatment with their patients and perhaps offer the patient less expensive options that may provide comparable efficacy at a reduced cost?
In my view, there is little controversy in appropriately providing patients with accurate information that may affect their quality of life, including the potential financial impacts of treatment. This approach is compatible with empowering patients, promoting autonomy, and giving patients control over their medical situation—and we owe that to our patients.
What would be unethical is recommending treatment without including the potential financial consequences of prolonged hospitalization, time off from work, and expensive out-of-pocket costs. Not all this information needs to be directly discussed in detail by the physician, but it should be part of the larger conversation with other oncology team members, such as social workers. Additionally, we also need to build in financial toxicity endpoints when we design clinical trials to show, for example, whether patients were able to return to work and function well.
Designing Clinical Trials for AYAs
One of the consequences of inadequate health insurance is that it prevents AYAs from enrolling in clinical trials studies. Why?
Studies have showed that underinsured AYAs are less likely to enroll in clinical trials. The reason why has not been fully studied, but we do know that enrolling in a clinical trial sometimes involves being away from home, a support network, and place of employment, and it can entail out-of-pocket costs for patients. All these concerns may discourage young adults from participating in these studies. How we design clinical trials for this patient population can make the difference in whether they enroll or not.
Coping With Inequities of Cancer Care
Many young adult minority survivors face worse outcomes than their White counterparts, especially those with a low-socioeconomic status. In addition to worse overall survival, how does a cancer diagnosis in this patient population have the potential to keep young minority survivors from attaining economic success?
It puts these patients in double or even triple jeopardy for economic distress. To begin, in terms of diagnosis, many socioeconomically disadvantaged minority patients do not have access to the same level of high-quality cancer care as those patients with a higher socioeconomic status. This often results in lower screening rates, delays in diagnosis and treatment, lower treatment adherence, and worse survival.
In terms of their long-term financial prospects, socioeconomically disadvantaged AYAs of color face greater challenges, because they begin their cancer journey with even fewer resources to maintain or regain their financial footing after treatment ends.
Developing and Implementing Survivorship Care Plans
AYA survivors are at risk of experiencing late effects from their cancer and treatment, which can negatively impact their long-term quality of life. Among their greatest concerns is fear of cancer recurrence, which causes worry, anxiety, and depression. How can survivorship care plans be developed to build a tailored whole-person approach to address the late and long-term physical, psychosocial, and financial effects of cancer?
Survivorship care is a developing discipline within adult oncology, and survivorship care plans have rightly received attention as a key component of survivorship care for survivors of all ages. However, studies have showed that survivorship care plans have proved challenging to implement efficiently and effectively over the past decade. The cancer survivorship community is wrestling with how best to design and efficiently distribute care plans in a scalable way, but it is essential that we figure this out.
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.
Survivorship care plans should summarize the cancer treatment patients received, future risks for late effects (including organ dysfunction and secondary cancers), and the medical screening and care patients may need in the future. These documents should be simple, clear, and communicate the essential information to patients and their primary care providers. This is the minimum we should be giving our patients following treatment, and it is part of empowering patients and building self-efficacy for staying well as survivors. It should remain our goal to ensure that every patient receives this basic information.
Editor’s Note: ASCO has developed two types of forms to help survivors keep track of their treatment, follow-up care, and the potential long-term late effects they may experience. The plans may be accessed at www.cancer.net/survivorship/follow-care-after-cancer-treatment/asco-cancer-treatment-and-survivorship-care-plans.
DISCLOSURE: Dr. Freyer reported no conflicts of interest.
1. American Cancer Society: Cancer in Adolescents and Young Adults: Available at www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2020/special-section-cancer-in-adolescents-and-young-adults-2020.pdf. Accessed November 3, 2021.
2. Holland LR, Walker R, Henney R, et al: Adolescents and. young adults with cancer: Barriers in access to psychosocial support. J Adolesc Young Adult Oncol 10:46-55, 2021.
3. Thom B, Benedict C, Friedman DN, et al: The intersection of financial toxicity and family building in young adult cancer survivors. Cancer 124:3284-3289, 2018.
4. Mann K, Waters AR, Perla L, et al: Financial burdens of insured adolescent and young adult cancer patients: A need for crowdfunding platforms, fundraisers, financial grants, and cost conversations with their cancer care team. 2020 ASCO Quality Care Symposium. Abstract 83. Presented October 9, 2020.
5. Lanwehr 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.
6. Lu AD, Zheng Z, Han X, et al: Medical financial hardship in survivors of adolescent and young adult cancer in the United States. J Natl Cancer Inst 113:997-1004, 2021.