GUEST EDITOR

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.

When Samantha Watson was diagnosed with Ewing’s sarcoma in 1999, she was just 21 years old and a senior in college. The diagnosis and its subsequent treatment (chemotherapy and surgery) postponed her entry into a career and the financial stability that steady employment usually brings to young, healthy adults. More than 1 year later, as Ms. Watson was completing her last semester in college and preparing to graduate, she was diagnosed with secondary myelodysplastic syndrome and underwent a bone marrow transplant. What made the back-to-back bouts of cancer so difficult to endure was not just the treatment or even the uncertainty of a cure, but the impact they had on her transition from college student to independent young adulthood.

“From an age and life-stage perspective, having a cancer diagnosis at 21 and then again at 23 was challenging because I didn’t have a lot in reserve professionally or financially and wasn’t sure how to move forward,” said Ms. Watson, Founder and Chief Executive Officer of The Samfund (thesamfund.org), a nonprofit organization that awards small grants to young adult cancer survivors who need temporary financial relief. “My peers had already launched their careers, and I had no idea how to go on a job interview.”

In addition to the emotional, physical, and psychosocial deficits adolescent and young adult cancer survivors face, they also have to contend with lifelong economic disparity.

— Samantha Watson

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Although Ms. Watson had the emotional and financial support of her parents during her treatment and recovery and did not have the added burden of mounting medical bills that could put her at financial risk, she saw the toll not having these types of support in place had on other young adult cancer survivors, and in 2003, she launched The Samfund.

Two years ago, Ms. Watson and her colleagues conducted a retrospective analysis of the financial impact of cancer on young adults, using data from The Samfund grant recipients. Their analysis found that the average net worth of those who received grants was –$35,000, compared with a $68,000 average net worth for young adults in the general population.¹

“In addition to the emotional, physical, and psychosocial deficits adolescent and young adult cancer survivors face, they also have to contend with lifelong economic disparity,” commented Ms. Watson. Ongoing and residual medical bills, depleted savings accounts, breaks in employment due to cancer treatment and its side effects, and lack of financial resources make it nearly impossible for these survivors to regain their financial independence after a cancer diagnosis, she added.

The ASCO Post talked with Ms. Watson about the financial inequity cancer places on young adults, how to help young survivors become financially literate, and what oncologists can do to help their young patients who are struggling financially.

Providing Financial Aid to Survivors in Need

How much is each grant, and how many grants have you awarded?

The need for this type of program is enormous. We don’t get a lot of funding from foundations or pharmaceutical companies, so we rely heavily on donations from individuals. Since 2005, we have awarded almost $2 million in grants to nearly 900 young adults. Our average grant is between $1,500 and $2,000, and people can receive a grant up to three times. Although our grants are not huge, they are enough to bridge lost wages due to cancer and cover a medical bill or a survivor’s rent for a couple of months—and that can mean the difference between being able to keep a home and being homeless.

We are now studying the impact these grants have had not just on the individual receiving the grant, but on the person’s spouse and children as well, because we know cancer affects the whole family, not just the person with cancer.

Unfortunately, that $2 million in grants we’ve awarded so far is just the tip of the iceberg in terms of the need for financial assistance. We receive so many grant applications and just don’t have the funding to accommodate every request.

What are the eligibility requirements to receive a grant?

Applicants must be between the ages of 21 and 39 and a resident of the United States; they have to have completed treatment with no evidence of disease, be at least 1 year post treatment and have stable disease, be in remission, and be on long-term hormonal or targeted therapy.

Oncologists have a responsibility to know the cost of the therapy they are prescribing their patients and see whether there is a good alternative if the cost of that treatment is too high for their patients.

— Samantha Watson

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We rely on a committee of volunteers to read and review all grant applications. They assess the immediacy of an applicant’s needs, the connection between an applicant’s cancer experience and current financial situation, and the availability of other resources. We tend to give priority to applicants in a near financial disaster, for example, someone who is about to lose his or her home.

A lot of our applicants are just starting to get back to work but are not yet making or saving enough money to cover their expenses and do not qualify for public assistance. Because our grants are not very large, part of the approval process is to see where we can make the biggest impact. Obviously, if someone’s financial situation is in crisis with bills up to six figures, a $2,000 grant won’t be of much help.

Preventing a Financial Crisis

Talk about the new program you have launched, Cancer Finances 101: A Toolkit for Navigating Finances After Cancer. How do you expect the program to help young adult survivors gain financial security?

We developed a toolkit called Cancer Finances (cancerfinances.org) with Triage Cancer (https://triagecancer.org), a nonprofit organization that provides cancer survivorship education, to help survivors make informed financial decisions during and after their cancer treatment. People come to The Samfund when they are already in financial crisis. The purpose of the toolkit is to try to prevent that financial crisis from happening in the first place.

Although we can’t offer financial advice, we can provide guidance on how to make informed decisions regarding health-care and disability insurance issues as well as employment concerns. We also can provide financial assistance resources so that recovering financially from cancer doesn’t become a lifelong struggle. An upcoming module will focus on fertility preservation and family-building procedures to help survivors understand and prepare for the potentially overwhelming costs of becoming a parent after cancer.

Influencing Public Policy to Combat Financial Debt

Your study showed a $100,000 difference in the net worth of young adult cancer survivors compared with their healthy counterparts quantifies the financial burden cancer places on survivors in this age group. How is your study shaping future programs for The Samfund?

We knew anecdotally that young adult survivors are struggling financially in profound ways, but seeing the data in aggregate was still eye-opening. Although we are doing our best to provide support on an individual basis, we are exploring ways to use our insight and data to impact much larger groups of people. To that end, we are identifying future topics for the Cancer Finances Toolkit based on the most common challenges we learn about through our grants program.

On a larger level, we are proud to be working with Critical Mass: The Young Adult Cancer Alliance (https://criticalmass.org) on public policy aimed at reducing the amount of financial debt young survivors incur after a cancer diagnosis. Specifically, we are working together on legislation, HR 2976: Deferment for Active Cancer Treatment Act, which would defer student loan payments for 1 year for anyone undergoing cancer treatment. Currently, having a cancer diagnosis doesn’t automatically qualify survivors for a loan deferment. As a result, the story we hear frequently is that many young adults have to choose forbearance or default entirely on their student loans, which can affect their credit in the long term. We aim to eliminate this problem with passage of the Deferment for Active Cancer Treatment Act.

Enlisting Providers to Ease Patients’ Financial Distress

What can oncologists do to help their young adult patients struggling with financial difficulty?

This is an uncomfortable topic for many oncologists to raise with patients because they have so many other matters to focus on during clinical visits. And patients are equally reluctant to broach the subject of financial distress because of shame or the fear of not receiving treatment.

Providers who know their patients are having financial difficulty should refer them to the hospital social worker or financial navigator for assistance. Most hospitals have a financial aid program to reduce medical costs, and some have private funds available for patients in need. They usually also have resource lists of outside organizations that can provide financial assistance and help patients manage their financial challenges, including CancerCare (cancercare.org) and the Cancer Financial Assistance Coalition (cancerfac.org).

However, I would also say that oncologists have a responsibility to know the cost of the therapy they are prescribing their patients and see whether there is a good alternative if the cost of that treatment is too high for their patients. To be fair, patients also need to feel empowered to speak up and ask for help in managing the financial impact of their treatment before it leads to a crisis situation. For example, they should be encouraged to reschedule appointments for weekends when possible to reduce the number of days off from work and understand the costs their health insurance covers.

Philanthropic grants from the cancer support community, a greater understanding by physicians of the financial burden cancer often places on young adults, and health-care policy reforms all have the potential to blunt the financial consequences of cancer on young adults and put them on a more secure financial path. ■

DISCLOSURE: Ms. Watson reported no conflicts of interest.

REFERENCE

1. 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.