Samantha Watson, MBA

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 C

 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 

). 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.

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 isolation due to a compromised immune system.

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.

 In addition to the obvious financial stress, a YA also faces significant emotional and psychological stress that can become paralyzing.

To begin to understand the financial impact of treatment specific to YA cancer survivors, we must recognize the forces at play:

		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.

 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.

		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.

		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.

 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.

 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 

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.

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.

 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.”

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. 

Samantha Watson, MBA, is the chief executive officer, The Samfund. Michelle Landwehr, MPH, is the chief operating officer, The Samfund. 

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. 

. 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. 

. 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? 

. 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. 

6. Zafar SY, Peppercorn JM, Schrag D, et al. The financial toxicity of cancer treatment: a pilot study assessing outâ€ofâ€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. 

. 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. 

. 2013;369(16):1484-1486. doi: 10.1056/nejmp1306826.

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

Articles

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 Cancer Survivors Disproportionately Affected by Treatment Costs

There are currently 630,000 young adults (YAs) in the United States with a history of cancer.

 Due to the overwhelming costs of cancer, many find themselves struggling financially post treatment—facing ruined credit, depleted savings, looming homelessness, and other dire circumstances.

 is finally being recognized as a legitimate and common after-effect of cancer treatment (thanks to 2014’s 

piece on the cost of cancer drugs and the team of doctors who recently published their case for lower costs

), we at The Samfund for Young Adult Survivors of Cancer have seen for over a decade how cancer can derail the financial health of YAs. In many ways, it is their life stage—more so than their specific diagnosis or treatment&mdash;that complicates their financial recovery: their schooling has been interrupted, their careers are stalled, and moving forward feels impossible. Compounding their struggles is the dearth of age-specific financial support services.

The Samfund is proud to be the first and largest organization in the United States uniquely designed to help YAs recover from the financial impact of cancer. It was founded in 2003 by a 2-time YA cancer survivor to provide financial assistance to YAs post treatment, regardless of diagnosis or where they live. Since 2005, The Samfund has distributed close to $1.5 million in grants and provided free online support and education through its website to YA survivors across the country facing great financial need due to cancer.

Many YAs lack the employment history of older adults, lack the family support of younger children, and are caught between being too old to be covered by their parents’ insurance and too young to comfortably afford their own. As a result, many YAs face impossible decisions about which bills to pay and which to forego, whether to bankrupt themselves to pay for health insurance or risk going without, and how to keep moving forward when there are so many obstacles in their way. Finishing treatment and having the freedom to move forward with their lives should be a relief, but the sudden reality of medical bills, coupled with drained savings accounts and limited employment options, is often more daunting than celebratory.

As one Samfund grant recipient wrote, “[My last date of treatment] should have been a day to celebrate, but instead it was a day when the reality sank in. Yes, I was cancer-free, but I was also broke. From that point forward, every bill has been a struggle to face. There’s just nothing left after I’ve paid my normal personal bills of rent, car payments, grocery bills, school loans, and so on. So, the bills have accumulated. The hospital calls regularly to urge me to pay more. I always pay what I can, but that leaves me with nothing to help rebuild my savings account, to visit friends, to buy a pair of shoes, or get ahead.”

Unfortunately, this sentiment is not uncommon. A study by Duke University and Dana-Farber Cancer Institute researchers found that even with insurance, cancer patients pay an average of $712 out-of-pocket for treatment-related expenses per month—an average of $8544 a year.

 For patients without insurance, the cost is exponentially higher, and the expenses continue even after treatment ends. Follow-up care for those declared cancer-free can exceed $4000 a year. Not surprisingly, this financial toxicity can lead to poor health outcomes for YAs. We have sought to improve these outcomes through our programs.

Another Samfund grant recipient wrote, “I'm always told to focus on ‘me’ and ‘getting better,’ but that is almost impossible with all of the stress of post-treatment side effects, depression, and financial burden that cancer and treatment has created in my life.”

There are additional “collateral costs” related to financial toxicity. According to the results of a survey conducted by the Association of Oncology Social Workers, 66% of cancer patients with major financial challenges suffer from depression or anxiety.

 Sixty-three percent of oncology social workers surveyed in that same study reported that financial issues reduce patients’ compliance with their cancer treatment even though that treatment is key to their recovery. Additionally, 40% of patients reported depleting their savings, almost 30% reported dealing with bill collectors, and 54% of those handling a major financial burden said it had become more difficult in the past year to afford treatment. These results were echoed in a needs assessment conducted by The Samfund, which showed that 46% of respondents were “very uncomfortable” with their financial situation and 74% struggled with reducing debt and paying monthly bills.

Provisions Within the Affordable Care Act Are a Big Help

We were greatly encouraged by the outcome of the 

 case upholding the Affordable Care Act (ACA), especially because of the potential impact on the YA population. Anecdotally, we know that many YAs have gone without health insurance (pre- and post treatment) because of the cost and/or are skipping follow-up appointments because they have too many medical bills. Many say they are often embarrassed to see their doctors because they are behind on their payments.

Two of the mandates of the ACA will directly impact the ability of YA cancer survivors to get coverage: (1) they can remain on their parents’ insurance plan until age 26 years, and (2) providers can no longer deny coverage due to a preexisting condition. We have heard stories from YAs who found themselves uninsured at the time of diagnosis becoming saddled with hundreds of thousands of dollars in medical debt by the time their treatment is complete; obtaining an insurance policy with this preexisting condition was an impossibility. This policy change is completely life-altering for those who have found themselves in a similar situation after the ACA went into effect.

Jonathan S, a 31-year-old survivor of testicular cancer, told us, “With a few months left on my COBRA health insurance, I was paying nearly $650 per month for my premium. As my coverage was coming to an end, I knew no insurance company would insure me if [it] weren’t for the ACA. Because of the ACA, I have been able to purchase an affordable plan that suits all my needs.”

In spite of these positive developments, much confusion remains regarding how exchanges work, what subsidies exist, and if YAs can get quality medical care as cancer survivors. One of our goals as an organization is to educate this group about their options and their rights in terms of healthcare. To that end, we are proud to partner with Triage Cancer on a new program, Finances 101: A Toolkit for Young Adults with Cancer. This program will educate YAs with a cancer history on financial decision making at key junctures during their treatment and recovery in an effort to abate or prevent the financial toxicity so common in this age group.

We hear from many YAs who are now covered or whose premiums are now far less expensive as a result of the ACA, so we are seeing some improvement already. However, there are many who are still dealing with high deductibles and premiums that are more than they can comfortably afford or who are still without coverage. There is a lot more work to be done. An increase in marketplace options, ongoing education regarding the various available insurance options, and communication with healthcare providers on treatment costs will all contribute to improvement in health and psychosocial outcomes in this population. 

Samantha Watson, MBA, is founder and CEO, The Samfund.

Michelle S. Landwehr, MPH, is COO, The Samfund.

		DeSantis CE, Lin CC, Mariotto AB, et al. Cancer treatment and survivorship statistics, 2014. 

		Zafar SY, Abernethy AP. Financial toxicity, part II: how can we help with the burden of treatment-related costs? 

		Whalen J. Doctors object to high cancer-drug prices.

 website. www.wsj.com/articles/doctors-object-to-high-cancer-drug-prices-1437624060. Published July 23, 2015. Accessed August 21, 2015.

		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. 

		Mellace J. The financial burden of cancer. 

The financial aftereffects of cancer have a tremendous impact on young adults as they move forward with their lives after treatment.  


Samantha Watson, MBA

Articles

Young Adult Cancer Survivors Disproportionately Affected by Treatment Costs

Financial Toxicity and the Young Adult Cancer Survivor