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UCSF Study Shows GoFundMe is Financing Medical Travel, Alternative Treatments – and Funerals

September 15, 2019 - By Elizabeth Fernandez - With patients increasingly resorting to crowdfunding websites to pay medical bills, a new UC San Francisco study finds that online donations are sought for lost wages, child care and even occasionally experimental treatments.  

On average, cancer patients are raising about a quarter of their goal of $10,000, the study showed, with many requesting money to supplement health insurance or otherwise defray medical bills. The most pressing need cited in the study was to pay medical bills, which the authors said could be attributed to co-pays, out of pocket drug costs, or high deductibles. 

The study appears online in JAMA Internal Medicine

(Left) Benjamin N. Breyer, MD, senior and corresponding author of the study that examined GoFundMe campaigns. 

“The financial consequences of cancer care for patients and their families are substantial,” said senior and corresponding author Benjamin N. Breyer, MD, a UCSF Health urologist and first author of the paper. Breyer is an associate professor of urology at UCSF and chief of urology at UCSF partner hospital Zuckerberg San Francisco General Hospital and Trauma Center.

“It has been shown previously that patients with cancer, particularly those who are underinsured or lack insurance entirely, may sell possessions or go into debt or bankruptcy to pay for costs associated with care,” Breyer said. “We wanted to gauge how crowdfunding is being used to support oncology care needs, including the financial effect of insurance.”  

Innovations in technology, expensive cutting-edge therapies, and improved access to treatment have contributed to the rising cost of oncologic care in the United States.  

In their study, the authors identified the nation’s 20 most prevalent cancers, including breast cancer, leukemia, lung, brain, colon and pancreatic cancer. They used special software to gather information on 37,344 cancer “campaigns” listed on GoFundMe.com on Oct. 7, 2018. From those, they delved into slightly more than 1,000 campaigns, assessing a patient’s personal and financial life – including age, cancer type, job status and treatment plans -- from self-reported data.  

Researchers found that:

  • Cancer patients hoped to raise money for medical bills (41 percent), medical travel (25.3 percent), and non-medical bills (23.2 percent). Donations primarily were needed for childcare, alternative medicines, lost wages, medical travel and funeral expenses. 
  • The median fundraising goal was $10,000. The median donation reached was $2,125.
  • Fewer than 5 percent of patients sought donations for alternative treatments.
  • Underinsured patients requested $10,000 more on average but did not receive higher donations. Underinsured patients made up about 26 percent of the population in the study and were more likely to seek funds for unpaid medical bills compared to those not mentioning insurance.
  • Nearly 32 percent of the patients were at stage IV, the highest cancer level. About 42 percent had undergone chemotherapy, while nearly 31 percent had surgery.
  • About a third of the online postings were done by a third party. Children posted about 15 percent. 

“While the Affordable Care Act reduced the rate of uninsured people, cost containment measures have not been achieved,” said first author Andrew J. Cohen, MD, a former clinical instructor at the UCSF Department of Urology. He is now an assistant professor at the Brady Urological Institute at John Hopkins Medicine.

“People face multiple competing financial needs due to illness,” Cohen said. “For example, medical travel costs were a major problem for some people. It’s possible that the regionalization of oncologic care is improving cancer outcomes, but simultaneously it increases the financial burden on patients. Our results suggest that the financial burden of health care requires more attention and advocacy. Furthermore, the posting of medical information by patients and third parties on crowdfunding sites raises serious ethical, privacy, and fraud concerns.” 

Co-authors: Co-authors are Hartley Brody, BS; German Patino, MD; Medina Ndoye, MD; Aron Lia, MD; and Christi Butler, MD, all with the UCSF Department of Urology.   

Funding: Philanthropic research support provided by the Alafi Family Foundation, Russell and Sara Hirsch, and Jonathan Kaplan.

Disclosures: None reported.

About UCSF Health: UCSF Health is recognized worldwide for its innovative patient care, reflecting the latest medical knowledge, advanced technologies and pioneering research. It includes the flagship UCSF Medical Center, which is ranked among the top 10 hospitals nationwide, as well as UCSF Benioff Children’s Hospitals, with campuses in San Francisco and Oakland, Langley Porter Psychiatric Hospital and Clinics, UCSF Benioff Children’s Physicians and the UCSF Faculty Practice. These hospitals serve as the academic medical center of the University of California, San Francisco, which is world-renowned for its graduate-level health sciences education and biomedical research. UCSF Health has affiliations with hospitals and health organizations throughout the Bay Area. Visit http://www.ucsfhealth.org/. Follow UCSF Health on Facebook or on Twitter
Source: UCSF