Cancer takes a toll on patients of all ages. In 2020, projections estimated 89,500 new cancer diagnoses with more than 9200 deaths from the disease among adolescents and young adults (AYAs; persons aged 15 to 39 years).1 Not mentioned in that toll is the financial aspect of the disease. The monetary cost of having had cancer can be as toxic as the disease itself. Some survivors turn to medical crowdfunding to help pay their bills.

Lauren V. Ghazal, PhD, MS, FNP-BC, at the Center for Improving Patient and Population Health, School of Nursing, and the Rogel Cancer Center, both at the University of Michigan, Ann Arbor, and colleagues from Expect Miracles Foundation in Boston, Massachusetts, and the School of Nursing, University of North Carolina at Chapel Hill, undertook a study on medical crowdfunding among young adult cancer survivors.2

Expect Miracles Foundation seeks to build support for cancer research and financial and emotional assistance to cancer survivors.3 The organization has awarded more than $14 million in grants for cancer research and financial assistance to survivors. At the heart of their mission is the Samfund, which has provided emotional and financial support for young adults cancer survivors since its creation in 2003 by Samantha Watson, a 2-time cancer survivor. The merger of Expect Miracles Foundation and the Samfund in 2019 has allowed the organization to help these cancer survivors address the long-term financial challenges they may experience.3


Continue Reading

The Samfund has granted more than $3 million to young adult survivors since 2005. Grant amounts are based on the grant purpose, and applications are accepted twice a year, in the spring and the fall. The average award is $1500 and can be used for rent or mortgage and expenses related to medical care, car payments/repair, and education. Eligibility criteria include age 21 to 39 years at the time of application, have completed active cancer treatment, and proof of the association between their cancer diagnosis and their economic difficulty. A medical history completed by the physician, tax forms, and a personal statement describing the patient’s financial situation are required documentation applicants must provide.3

The Appeal of Crowdfunding Platforms

Medical crowdfunding is now commonplace in the US, with 1 of 5 Americans having contributed to such a campaign, explained Dr Ghazal and colleagues.2 GoFundMe is the most frequently used crowdfunding site for individual fund raising. It hosts campaigns that patients or their loved ones create to help defray medical treatment costs.4

The platforms utilize appeals on social media and other types of communication to raise funds from many people — the crowd — to help cancer survivors with their medical and living expenses. Successful crowdfunding can offset inadequate health insurance coverage. People who read appeals for help with housing and food or illness-related expenses such as medication and survivorship care respond to the needs of the survivors they read about.

For young adult cancer survivors, the alternative to medical crowdfunding often is going without or cutting back on medical care or items essential to daily living. This can have a devastating effect on the survivor, although how much of an effect is not known because studies assessing crowdfunding are rare. Young adults, those aged 21 to 39 years, are an often neglected group in terms of survivorship studies. Therefore, the researchers sought to focus on this population to better understand their perceptions of and experiences with medical crowdfunding.2

Samfund grant recipients who received their grants between 2005 and 2020 were recruited to complete an online survey. Of the 113 cancer survivors who initiated the study survey, 46 (40.7%) had a history of initiating a crowdfunding campaign and/or receiving funds from one.

Crowdfunding Is Not Perfect

Asking for money is not easy, whether online or in person, and socioeconomic status is a barrier in this environment, too. Patients from higher socioeconomic areas are more successful than those from disadvantaged locations, even though the latter are more likely to pursue crowdfunding.

There is an art to these campaigns. For example, crowdfunding campaigns that included descriptions of the cancer patient as worthy of donations, as being brave, warm, or grateful, were able to raise more money than less descriptive narratives.2

Asked what they thought helped them in their efforts and what barriers they encountered, more than half of participants thought their age and socioeconomic status in their community were helpful. Race and income had an effect as well.

“I live and work in a wealthy, primarily White area. I believe this is why I raised so much money,” commented one study participant.2

Although that seems paradoxical to the need for money, other participants had similar replies. One commented that crowdfunding works best for those with connections to wealthier communities, while another explained that most of her peers and relatives do not have enough disposable income to contribute. Other participants noted that they simply do not have enough presence on social media for crowdfunding to be effective.2

A number of participants said that their friends or others set up the accounts for them. Although the funds were clearly helpful, they felt uncomfortable that their diagnosis and medical information was so visible on the Internet.

Some were unhappy that the crowdfunding platform took such a large percentage of the funds raised. Most crowdfunding platforms charge a platform fee of approximately 2.9% of the funds raised and approximately $0.30 per transaction. Although GoFundMe has no platform fee, the company charges a processing fee of 1.9% of the funds raised and $0.30 per transaction.5

Other survivors realized that raising money for their illness would be just like their cancer: a long-term process. They regretted having to continue asking for funding as time went on. Some patients felt an element of shame in having to ask for money to cover their medical expenses.

“We found pursuit of financial assistance to be a compromise — between vulnerability, privacy, and financial support,” concluded the researchers.2 This study’s findings highlight the need to improve financial interventions without worsening health disparities.

References

  1. Miller KD, Fidler-Benaoudia M, Keegan TH, Hipp HS, Jemal A, Siegel RL. Cancer statistics for adolescents and young adults, 2020. CA Cancer J Clin. 2020;70(6):443-459. doi:10.3322/caac.21637
  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. Expect Miracles Foundation. About us. Expect Miracles Foundation website. Accessed April 14, 2022. https://expectmiraclesfoundation.org/our-mission
  4. GoFundMe. How GoFundMe works. Accessed April 14, 2022. https://www.gofundme.com/c/how-it-works
  5. Kearl M. Best crowdfunding platforms. Investopedia website. Updated March 20, 2022. Accessed April 14, 2022. https://www.investopedia.com/best-crowdfunding-platforms-5079933#toc-what-are-expected-crowdfunding-costs

This article originally appeared on Oncology Nurse Advisor