Crowdfunding for Cancer: What Financial Toxicity Among Young Adults Says About the US Health Care System

GoFundMe, Kickstarter, Indiegogo, even Facebook: Crowdfunding websites have proven to be effective fundraising platforms for important causes. However, the staggering rise in crowdfunding campaigns among young adults to cover medical bills and basic essentials is very alarming.

In 2019, a survey from NORC at the University of Chicago found that 1 in 5 Americans reported that they or a household member had contributed to a crowdfunding campaign set up to fund someone’s medical bills or treatment.¹ Additionally, approximately 8 million Americans started a campaign for themselves or a household member, and about 12 million Americans started a campaign for someone else during the same year.

Adults in their 20s and 30s diagnosed with cancer can have a staggering financial burden, largely resulting from the high costs of medical treatments and the financial vulnerability that many people in this age range experience.

One study published in the Journal of Cancer Survivorship that investigated the experience of medical crowdfunding among young adults aged between 21 and 39 years found that despite how immensely helpful donations to campaigns were, medical crowdfunding also brought a lot of shame, stigma, and stress.² The study was the first to examine how crowdfunding impacted young adult survivors of cancer.

The study was conducted by researchers from The Samfund, a nonprofit organization dedicated to providing support to patients recovering from cancer treatments, and its goal was to survey patients about their opinions on their medical crowdfunding experiences. In 2019, The Samfund merged with Expect Miracles Foundation. The participants had a mean (SD) age of 27.65 (6.55) years and 84.8% were women. A majority were White, lived in suburban areas, had a bachelor’s degree or higher at the time of crowdfunding, and had their campaigns started by a friend or family member.²

“It’s a great thing that people can contribute, and that hopefully they find the help they need, but in what universe should that have to even happen in the first place?” said Samantha Watson, a study co-author, manager of stewardship at Expect Miracles Foundation and founder of The Samfund, in an interview with The American Journal of Managed Care (AJMC®).

Why Young Adults Gravitate to Crowdfunding

The high costs related to health care, insurance, treatments, and hospital care are worrisome for Americans regardless of age, especially regarding oncology; after cancer, patients may require regular screenings and subsequent treatments after overcoming their initial battle. But what makes beating cancer as a young adult extra-challenging, and why are so many young adult patients with cancer turning to crowdfunding?

“Navigating cancer as a young adult, is most likely [their] first major interaction with the health care system. So, young adults in their 20s are the age group least likely to have health insurance, and they have low financial health literacy, which is not a fault of their own,” said Lauren Ghazal, PhD, FNP-BC, a postdoctoral research fellow at the University of Michigan School of Nursing and a co-author of the study, in a separate interview with AJMC®.

Additionally, young adults—who may still be attending school or are new to the workforce—have likely not had sufficient time to establish themselves in their careers. Young adults are more likely to face greater job insecurity, work lower-wage jobs, and have higher education-related expenses (ie, student loans).

The average amount of student loan debt for a bachelor’s degree holder has more than tripled since the 1990s, from $10,000 to more than $37,000, and more than 43 million Americans currently have student debt, according to the Education Data Initiative.

Watson encapsulated the financial concerns of young adults with cancer: “It’s medical costs on top of everyday living expenses, on top of insurance concerns, on top of just everything all at once—at a time when you [often] don’t have enough money to pay for all of your bills anyway,” she said. “When you take into account someone’s life stage more so than specific age, someone in their early to mid-20s who is just starting out, if all of a sudden everything is working against them, it becomes that much harder to catch up financially.”

Ghazal and Watson both have an in-depth perspective and special expertise on this topic: They are cancer survivors as well as researchers. Ghazal, who was diagnosed when she had recently begun her PhD studies, found the experience to be an eye-opener about how the US health care system functioned—and how lucky she was to have the support and background to help navigate it.

Both Watson and Ghazal “recognized our privilege and our literacy in this, and [yet] it was still so overwhelming. What did it mean for others who didn’t have the background and clinical education, who didn’t have parental support, who didn’t have a community that could financially support them when they needed it?” said Ghazal.

For some young people with cancer, crowdfunding can feel like their only option.

The Pros and Cons of Crowdfunding

Crowdfunding can be considered a “life saver,” as one participant described it. Others added that crowdfunding was a stress reliever, a way to cover immediate expenses, and a tool that allowed them to focus on their health rather than bills. In addition, crowdfunding provided a convenient method of collecting donations.

“Any funds that are raised or donated, also can be used to help someone pay their rent or pay for the gym membership that is critical to their healing but financially out of reach. There are a lot of things that people need money for during and after cancer treatment that they just can't afford to pay on their own,” explained Watson.

Some study participants noted that crowdfunding may be helpful only for those who have established networks with or proximity to wealthy people. The ability to meet donation goals was found to be easier for those who had a larger following on social media or belonged to several communities, lived in wealthier areas, were from a higher socioeconomic background, and were White. Also, patients who have or are pursuing higher education may have an easier time networking with higher-income earners.

On the other hand, participants who had friends or family who didn’t have much disposable income reported struggling to meet donation goals.

Ghazal mentioned the concept of “crowdfunding campaign fatigue,” meaning that social media users may have seen so many crowdfunding campaigns that the ones for medical reasons may get lost in the shuffle. During the COVID-19 pandemic, especially, an abundance of crowdfunding campaigns arose for those who needed extra funds for food and shelter after losing their job or being hospitalized.

“If you’re scrolling Facebook, for example, and you see 20 people crowdfunding for something, they all get lost. I think that dilutes some of the importance of each one, because there are just so many people crowdfunding for something,” said Watson.

Most (52.2%) of the participants in the study did not meet their fundraising goal and the majority of those who did took 6 months to achieve their goal. Many of the participants saw donations dwindle after the first few months; one reported that a friend advised them to stop asking for donations after their treatment cycles were completed.

Additionally, crowdfunding websites carry privacy concerns. Patients with cancer who seek to start a campaign are forced to disclose a lot of personal medical information to a large amount of people, to convince them that their cause is worth donating to. Understandably, this can be stressful for patients.

Patients may not have the time or emotional bandwidth between treatments to write up their story, or they may feel uncomfortable with the idea of marketing their illness or exposing vulnerable information about their medical conditions on the internet.

Many study participants “acknowledged fears related to publicly sharing personal health information, which has been found in other studies and labeled either as a privacy paradox or publicity tension,” described Ghazal. “[Questions] like ‘What would the campaigns do with this information?’ came up pretty often, as did, ‘How much information was just enough to share? How much information did I have to share to show that I’m in need?’”

Additionally, donations to crowdfunding websites are not tax-deductible, Watson mentioned, which can limit the number of people who have the means to donate to a person’s medical campaign. Some participants also expressed frustration that crowdfunding websites take a portion of the donations, a fact many donors may not realize prior to giving.

“I think [the fees] make sense to a certain extent, because with the volume of transactions that a site like GoFundMe is processing, there’s a cost to that donation process….[but] I think most people still don’t realize that. And so, transparency is key,” said Watson.

Several participants reported that they wouldn’t have been able to afford treatment and other necessities without medical crowdfunding. Crowdfunding was also reported as an easy way to allow loved ones to help, even if they don’t live nearby.

“The best thing that crowdfunding provides is the opportunity to do something. When you see someone you care about going through something very challenging, everybody’s first question is, ‘What can I do to help?’ And usually, there’s nothing. But [crowdfunding] gives people a very easy, very tangible way to do something to help that person,” Watson continued.

However, other participants reported that feeling the need to ask family and friends for money made them feel “shameful,” “uneasy,” or “humiliated.”

“Our study really just scratches the surface on the emotional or psychological impact of having to ask for support,” said Ghazal. “Other questions [came up]: ‘What will people think of me if I’m asking for money to afford a cancer treatment? Will people question my need for this?’ And those are true concerns that you have while going through a cancer diagnosis and treatment.

“[This study] is sort of a check on our health care system at large, [and it asks], ‘Is this the best that we can do for young adults diagnosed with cancer?” Ghazal noted.

The US Health Care System and What Needs Fixing

A big takeaway from Ghazal and Watson’s study was that crowdfunders consistently questioned why they had to pursue crowdfunding as a possible solution to their cancer-related financial struggles.

“We live in a country where the costs of care falls on the shoulders of friends and family donating $5 and $10 at a time. It blows my mind that that’s where we’re at….our system needs a total overhaul,” proclaimed Watson.

In 2020, $208 billion was spent on cancer care in the United States, a number that is expected to increase to $246 billion by 2023, according to an analysis published in Trends in Cancer. Furthermore, up to 48% of patients with cancer reported financial toxicity, and up to 73% face subjective financial toxicity, including worries about paying bills and other costs of living.³

Over the past decade, researchers have focused on financial toxicity, a term coined by Syed Yousuf Zafar, MD, and Amy Abernathy, MD, in 2013. The concept describes how financial distress can contribute to worse clinical outcomes and reduced quality of life in patients with cancer.⁴

Zafar and Abernathy referenced study results indicating that 19% of the patients surveyed believed that cost of their treatments caused their families a large amount of distress, 11% took treatment costs into consideration when deciding on whether to receive a therapy, and 9% decided not to receive a therapy because of the cost. All these patients had health insurance, dipped into their savings, and worked longer hours to be able to afford therapy.

Since the rise in awareness of financial toxicity, other researchers have explored its effects on the health of patients with cancer, including a landmark study that found an association with increased mortality.⁵ A patient-focused page produced by the National Cancer Institute warns of the risks of depression and stress that can be associated with a filing for bankruptcy.⁶

Getting coverage for cancer therapies, especially newer ones, can be difficult to obtain for patients, as health systems may choose not to cover emerging therapies that have not yet been proven to provide significant value to patients and that exceed a certain monetary threshold.

From a business standpoint, pharmaceutical companies often offer rebates that can make expensive medications more affordable for health systems. However, because insurance plans are responsible for setting patient co-pays and co-insurance percentages, which are based on drug list prices without accounting for potential rebates, patients do not benefit from rebate programs and are subject to higher out-of-pocket costs.

Watson expressed worries about patients skipping or rationing medications as a means of avoiding high co-pays and neglecting follow-up care out of fear that they can’t afford it. “What does crowdfunding say about us? That’s exactly where we landed, but it doesn't say anything good, in my opinion,” she said.

Results from the aforementioned NORC survey found that 60% of respondents said the government should bear “a great deal” or “a lot” of responsibility for providing help when medical care is unaffordable.

“It is clear that Americans want government and providers to work together to provide charity or assistance when needed,” said Susan Cahn, DrPH, MHS, MA, senior research scientist at NORC, regarding the survey. “Fewer Americans think that family, friends, or even strangers should shoulder the costs of care that patients and their families cannot afford.”

Watson, Ghazal, and authors of the Trends in Cancer analysis propose several solutions to address financial need for adults with cancer:

• Allowing the federal government to negotiate with companies to set drug prices
• Instituting a beneficiary out-of-pocket cap under Medicare Part D
• Allowing low-income Medicare enrollees who do not qualify for Medicaid to have their drug coverage improved
• Implementing pharmaceutical-led patient assistant programs with a straightforward and simplified application process
• Improving access to at-home health care services to avoid costs related to hospitalization and emergency department visits
• Implementing routine screening for financial toxicity in patients
• Providing financial counseling to physicians to help them approach sensitive topics with patients
• Providing financial navigation programs for patients in need of help with bill management

“Sometimes people just need better guidance in terms of financial management while they’re going through treatment. [Almost] nobody talks to patients about that,” Watson explained. “The financial literacy piece after treatment matters [a great deal], because in addition to just deserving the opportunity to go forward and create a future for yourself…when young adults use up all their money in treatment, don’t have a ton of parental or other support, and now have to go out into the world and figure this out…there are implications over the long term.”

Ghazal mentioned an opinion piece published by USA Today titled “Hello Congress, Americans need help and we can’t do your job for you,” written by Tim Cadogan, the CEO of GoFundMe. Cadogen commented that despite the growing number of GoFundMe campaigns that were started to help people who were negatively affected by the COVID-19 pandemic, the website was never intended to be a replacement for a federal pandemic aid package.⁷

“GoFundMe itself doesn’t view itself as a substitute for a more comprehensive access to health care for everybody. And so, young adult cancer survivors and utilizers of it should not [view it as such, either],” said Ghazal.

“I think the key to making any sort of effective change is making sure that all voices are represented, because it’s equally important to acknowledge what certain parties can’t do,” Watson elaborated. “There are so many moving parts that it’s easy to say, ‘Well, this person, or that party, should do something,’ but until that party is at the table, it’s not helpful.”

In their study on crowdfunding, the investigators cited earlier work that established a call for ethics-focused social science research into medical crowdfunding that put the issue into a larger perspective:

“When medical crowdfunding is described as a solution to the problem of inadequate access to medical care through these websites and the feel-good stories they encourage in the media, they help to divert attention from the much harder but necessary work of reforming health systems to ensure efficient and equitable access to medical care.”⁸

Ghazal emphasized the importance of having social and medical safety nets in place to allow young adult survivors of cancer to enjoy their lives after they beat cancer.

“They have felt that they’re a group that’s left behind, and [that is] in between the pediatric and adult worlds,” Ghazal said. “We must ensure that we keep young adult cancer survivors on their treatment regimens in their homes, ensure they have the food that they need, and also have funds to be young adults—that is to socialize, be with their peers, and participate in the economy.”

References

1. Millions of Americans donate through crowdfunding sites to help others pay for medical bills. NORC at the University of Chicago. News release; February 19, 2020. Accessed March 27, 2022. https://www.norc.org/NewsEventsPublications/PressReleases/Pages/millions-of-americans-donate-through-crowdfunding-sites-to-help-others-pay-for-medical-bills.aspx.

2. Ghazal LV, Watson SE, Gentry B, Santacroce SJ. “Both a life saver and totally shameful”: young adult cancer survivors’ perceptions of medical crowdfunding. J Cancer Surviv. Published online February 16, 2022. doi:10.1007/s11764-022-01188-x

3. Shah K, Zafar SY. Chino F. Role of financial toxicity in perpetuating health disparities. Trends Cancer. 2022;8(4):266-268. doi:10.1016/j.trecan.2021.12.007

4. Zafar SY, Abernethy AP. Financial toxicity, part I: a new name for a growing problem. Oncology (Williston Park). 2013;27(2):80-81,149.

5. Ramsey SD, Bansal A, Fedorenko CR, et al. Financial insolvency as a risk factor for early mortality among patients with cancer. J Clin Oncol 2016;34(9):980-986. doi:10.1200/JCO.2015.64.6620

6. Financial toxicity (financial distress) and cancer treatment (PDQ®)–patient version. National Cancer Institute. Updated September 20, 2019. Accessed April 6, 2022. https://www.cancer.gov/about-cancer/managing-care/track-care-costs/financial-toxicity-pdq#_273

7. Cadogan T. GoFundMe CEO: Hello Congress, Americans need help and we can’t do your job for you. USA Today. Published February 11, 2021. Accessed April 3, 2022. https://www.usatoday.com/story/opinion/voices/2021/02/11/gofundme-ceo-congress-pass-covid-relief-desperate-americans-column/4440425001/

8. Snyder J, Mathers A, Crooks V. Fund my treatment!: A call for ethics-focused social science research into the use of crowdfunding for medical care. Soc Sci Med. 2016;169:27-30. doi:10.1016/j.socscimed.2016.09.024.