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Young Adult Cancer Survivors Disproportionately Affected by Treatment Costs

Samantha Watson, MBA, and Michelle Landwehr, MPH
Young adult (YA) cancer survivors are hit the hardest in the wallet by their treatment. The average net worth of YAs who have received grants from The Samfund is a staggering —$35,000, while their counterparts in the general population is $68,000
Young adult (YA) cancer survivors are hit the hardest in the wallet by their treatment. In fact, as we discovered while analyzing our data for our research paper published in February 2016 in Cancer Medicine,1 the average net worth of YAs who have received grants from The Samfund is a staggering –$35,000 (yes, that’s a negative sign), while that of their counterparts, in the general population, is $68,000—a difference of more than $100,000 (see FIGURE). This disparity exists on top of the emotional, physical, and psychosocial deficits that YAs face. What’s more, YA patients with cancer and those newly deemed cancer-free are the least likely to be employed.2

Compared with their siblings or peers who do not have a history of cancer, YA patients with cancer are less likely to be working for reasons that include:
  • Their inability to report to work due to physical symptoms resulting from their treatment
  • Medical appointments
  • Hospitalization
  • Medical isolation due to a compromised immune system.2
This starts a pattern from which it can seem impossible to escape: a YA has to leave his job to undergo treatment, receives bills for his treatment that are difficult to pay without an income, stays out of work after treatment (while continuing to receive bills) because of the treatment’s effects, and then avoids necessary follow-up care because he cannot afford additional bills.3,4 In addition to the obvious financial stress, a YA also faces significant emotional and psychological stress that can become paralyzing.

WHAT TRIGGERS THIS VICIOUS CYCLE?
To begin to understand the financial impact of treatment specific to YA cancer survivors, we must recognize the forces at play:
  1. The “I don’t know what to ask” factor. Many YAs don’t know how to start a conversation about finances with their doctors, even though they feel this is important.5 For YA patients, the priority at the time of diagnosis is, understandably, survival, and they don’t want to feel like they are sacrificing their care by asking for a less expensive treatment protocol. Conversations about finances frequently take a back seat until it’s too late and debt has already spiraled out of control. In his 2015 study, Yousuf Zafar, MD, MHS, found that only 19% of patients reported having discussed the cost of cancer treatment with their physician.6
  2. The “I’m too embarrassed to ask” factor. Many of our YAs have expressed feelings of shame, fear, or reluctance to talk with their doctors because they cannot afford their care. As one of our recipients confirms, “I would feel uncomfortable discussing financial concerns with my doctor, thinking perhaps they would not want to treat me, or would not be as eager to treat me if they were afraid my bills would end up in collections.” Some are afraid that their doctors will not be reimbursed if they, the patients, do not pay their hospital bills. YAs express guilt at this fact, since they feel they owe their lives to their clinicians.
  3. The “I can’t afford it” factor. On a most basic level, YAs who have been through treatment just cannot afford their ongoing care. Treatment does not end when chemotherapy and radiation do. Every day, we hear from YAs who are skipping medications and meals, among other necessities, due to their treatment costs.7 One survivor, when discussing the challenges of turning 26 and losing her parents’ insurance, wrote in her application: “Now that I am 26 years old and no longer covered under my parents’ health insurance, I am responsible for the cost of my annual [magnetic resonance imaging], seizure medication, and doctor visits. The cost of a brain scan is $6000 or more for each scan, and I am required to have one on an annual basis.”
Another points to the unique challenge of being hit with an expensive medical condition when trying to survive financially on their own for the first time: “This obstacle in my life made me move backwards financially right when I thought I was going to start being on my own. I cannot keep up with all these medical bills that come with getting cancer, and it is affecting my credit. I cannot get a credit card and I feel like I am financially stuck at the moment.”

What happens when YAs are diagnosed with cancer, taken out of the workforce, and buried under medical debt? The result is what is described as “financial toxicity,” which ripples out into society at large.6 YAs have seen more than their fair share of this phenomenon, as evidenced in the thousands of grant applications we’ve received over the past decade. In the TABLE below, we illustrate some of the common debts and medical expenses our population shoulders. It’s no wonder that YAs are stuck making impossible decisions about their care.

As one YA writes:
I am barely able to keep up with living expenses—specifically food and housing, along with financing my education and medical expenses. While this is true for anyone, being a cancer survivor is an even greater challenge due to a weakened immune system, lower stamina, continuing medical follow-up care, and the anxiety that comes from worry of a future recurrence. I’ve been forced to borrow from family/friends occasionally to cover things like the fee for storing my frozen eggs, cost of medical insurance premiums, prescriptions, and medical follow-up appointments. I’ve held off on scans and routine female health exams to eliminate additional medical debt.

Another discusses the burden of medical costs on her overall expenses [slightly modified]:
With cancer, I have dedicated a large portion of my financial resources to medical expenses including previous bills, doctor’s visits, and surveillance scans, as well as unanticipated visits to the [emergency room], procedures, and lab work. This has been a very difficult situation for me, as I am a medical student with no source of income and I rely completely on student loans. Unfortunately, my student loans do not take into account the additional cost of my medical expenses, and I have not received supplemental income from any other source. As a consequence, I have skipped appointments that I could not afford and pushed back appointments in order to avoid the expense.

The impact of patients’ financial toxicity goes beyond a zero bank account balance. The far-reaching consequences for YA survivors include a decrease in quality of life and overall health, plus an increase in negative stress.8,9 We’ve shown how financial limitations and treatments, both primary and follow-up, are inseparable for many YAs. Once overwhelming stress becomes a contributing factor, the pattern explained above worsens. One of our grant recipients explains: “The stress from my money issues due to cancer has not only led to a diagnosis of severe anxiety and depression (for which I now have to buy medication for and pay for [doctor’s] visits with my primary), but it literally causes fatigue and bone pain. I feel it has limited me in my social life, how I perform at work, my personal happiness, my relationships with others, and I truly feel like my youth has been stolen from me.”

IDENTIFYING SOLUTIONS
The good news is that the best and brightest minds in oncology are working hard to address financial toxicity. At this year’s annual conference for the American Society of Clinical Oncology, Zafar; Veena Shankaran, MD, MS; and Jill Hershman, MD, MS, presented research illustrating the impact of financial toxicity on patient outcomes and adherence.

At The Samfund, we’re working on new ways to help YAs manage these costs and reduce the associated stress. We find that by the time YAs come to us for a grant, many are in dire straits: drowning in credit card debt (charging all of their medical bills without realizing that even minimum payments could keep them out of collections), making astronomical car payments (because they needed a way to get to and from treatment), declaring bankruptcy in their 20s, and so on. In many instances, the YAs do not have the luxury of time or information to research better choices, and end up choosing what seems like the quickest or easiest alternative in the short term. But in almost all cases, early guidance in the decision-making process could have prevented these crises from happening.

With this in mind, The Samfund, in collaboration with Triage Cancer, is developing a new program: “Finances 101: A Toolkit for Young Adults With Cancer.” The main goal of this program is to equip the YA community with the tools necessary to make educated decisions about their finances, healthcare, and other related challenges during key moments in their cancer journey (diagnosis, during treatment, or after treatment), so that recovering financially from cancer does not become a lifelong struggle.

We hope that increasingly inclusive discussions regarding the cost of cancer treatment, health insurance coverage, developments in research, and the importance of healthcare for all shed light on not only overall trends, but also on the issues of specific populations including YA cancer survivors. With limited employment history, a newly or not-yet-formed family unit, and minimal savings, the costs of care add up much faster for this population. An increase in financial stress often leads YAs to experience emotional, psychological, and social stresses which negatively impact quality of life and compromise their recovery and overall health. Despite all of these undue hardships, we are witness to an astounding and common resiliency in many of the YAs we speak with every day. We are proud to represent the YA patient voice in larger conversations about costs of cancer, and are hopeful that, collaboratively, we can begin to develop more comprehensive and effective responses to financial toxicity. EBO
Samantha Watson, MBA, is the chief executive officer, The Samfund. Michelle Landwehr, MPH, is the chief operating officer, The Samfund. 

Address for correspondence 
Samantha Watson
The Samfund
89 South Street, LL02
Boston, MA 02111

E-mail: sam@thesamfund.org
References

1. Landwehr MS, Watson SE, Macpherson CF, Novak KA, Johnson RH. The cost of cancer: a retrospective analysis of the financial impact of cancer on young adults. Cancer Med. 2016;5(5):863-870. doi: 10.1002/cam4.657.

2. Employment status of the civilian noninstitutional population by age, sex, and race. Bureau of Labor Statistics website. http://www.bls.gov/cps/cpsaat03.htm. Accessed 30 June 2016.

3. Weaver KE, Rowland JH, Bellizzi KM, Aziz NM. Forgoing medical care because of cost: assessing disparities in healthcare access among cancer survivors living in the United States. Cancer. 2010;116(14):3493-3504. doi: 10.1002/cncr.25209.

4. Kent EL, Forsythe LP, Yabroff KR, et al. Are survivors who report cancer-related financial problems more likely to forgo or delay medical care? Cancer. 2013;119(20):3710-3717. doi:10.1002/cncr.28262.

5. Alexander GC, Casalino LP, Meltzer DO. Patient-physician communication about out-of-pocket costs. JAMA. 2003;290(7):953-958.

6. Zafar SY, Peppercorn JM, Schrag D, et al. The financial toxicity of cancer treatment: a pilot study assessing out‐of‐pocket expenses and the insured cancer patient’s experience. Oncologist. 2013;18(4):381-390. doi: 10.1634/theoncologist.2012-0279.

7. Watson SE. Internet-based crowdfunding for cancer treatment costs. The American Journal of Managed Care website. http://www.ajmc.com/contributor/samantha-eisenstein-watsonmba/2016/01/internet-based-crowdfunding-for-cancer-treatment-costs#sthash.D2vNUAAZ. xiI8hL6v.dpuf. Published January 15, 2016. Accessed July 5, 2016.

8. Fenn KM, Evans SB, McCorkle R, et al. Impact of financial burden of cancer on survivors’ quality of life. J Oncol Pract. 2014;10(5):332-338. doi: 10.1200/JOP.2013.001322.

9. Ubel P, Abernethy A, and Zafar SY. Full disclosure—out-of-pocket costs as side effects. N Engl J Med. 2013;369(16):1484-1486. doi: 10.1056/nejmp1306826.

10. Triage Cancer website. http://triagecancer.org/. Accessed July 5, 2016.
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