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Medical Crowdfunding for Neurologic Disorders Soars

Kelli Whitlock Burton

Crowdfunding campaigns to cover patients' costs related to neurologic conditions have skyrocketed over the past decade, a new study shows.

Between 2011 and 2020, the number of fundraising campaigns for neurologic disorders on the popular crowdfunding site GoFundMe increased from one in 2011 that raised $24,839 to 1106 campaigns in 2020 which garnered $19.2 million.

The primary goal for the majority of these fundraising efforts was to help cover the costs of medical bills and housing. Amyotrophic lateral sclerosis (ALS) and central nervous system (CNS) tumors were two of the most common neurologic diseases. In addition, nearly 85% of the campaigns were for adults with medical insurance.

photo of Dr. Saadi Altaf
Altaf Saadi, MD, MSc

"The majority of people fundraising in our sample reported having insurance, which suggests that existing insurance coverage plans are not enough to meet people's needs after a neurological illness," study investigator Altaf Saadi, MD, MSc, assistant professor of neurology at Harvard Medical School and Massachusetts General Hospital and principal investigator with the Neurodisparities and Health Justice Lab at Massachusetts General Hospital, Boston, told Medscape Medical News. 

"We have a system right now that relies so much on individual fundraising or clinicians and individuals appealing private insurance coverage decisions, and this is financially devastating our patients and their families." 

The findings were published online July 17 in JAMA Neurology.

More Than Medical Bills

Studies suggest that GoFundMe controls more than 90% of the US crowdfunding market. Other platforms that offer medical fundraising include Fundly and CoFund Health.

Previous research shows that more than one quarter of campaigns created in the US on GoFundMe between May 2010 and December 2018 were created to cover healthcare-related costs. The combined goal for those campaigns, most of which were for cancer-related costs, was $10.3 billion. 

"There's the concept of 'financial toxicity' that's gaining traction and attention, particularly within the field of oncology, and I was interested in trying to capture this within neurology, adding data to what I've been bearing witness to anecdotally," said Saadi.

For the study, investigators used custom web-scraping code to search tens of thousands of fundraising campaigns for those with terms corresponding to neurologic conditions. The study period was March 2011 through March 2021, and campaigns with broken hyperlinks, those for organizations or animals, and those for non–US residents were excluded from the final analysis. Of the 11,274 campaigns screened, 5460 met the study's inclusion criteria.

The median fundraising goal was $20,000 and 18.6% of campaigns had met their goal. Nearly 80% of the campaigns were for adults, and almost 85% were for people health insurance.

The most common conditions associated with campaigns were ALS (19.7%) and CNS tumors (16.5%). About $18 million was raised for people with ALS and about $27 million for those with CNS tumors.

Of all the campaigns, 43% were to cover housing-related costs, such as family lodging during patient hospitalization or home remodeling to accommodate disabilities. Medical bills and debt were the target for 42% of the campaigns, 40.5% were for rehabilitation services, and 32.2% were for lost income for both patients and family caregivers.

"It's the entire household unit that's affected by someone's illness, like loss of income because family members leave their jobs for caregiving. When we are thinking about ways to reduce the financial burden for our patients, yes, there are direct medical costs relating to medical bills and treatment and these are exorbitant — but we also have to think about costs of rehabilitation services, disability expenses, home care, caregiving and need for expanding paid sick leave," said Saadi.

Ethical Issues

Commenting on the findings for Medscape Medical News, Dominic Wilkinson, MD, PhD, a professor of medical ethics at the University of Oxford, United Kingdom, said he was surprised that campaigns for nonmedical expenses outnumbered those for medical expenses, given the high rate of underinsurance in the US that leaves many unable to pay medical bills.

"Medical crowdfunding is a way of responding to a problem, which is that people who are unwell are then unable to afford what they feel need, whether that's conventional medical treatment because they are uninsured, or unconventional medical treatment that's not covered by their insurance, or the additional costs that they have to bear," said Wilkinson, who also is director of medical ethics and deputy director at the Oxford Uehiro Centre for Practical Ethics.

"Obviously not everybody who tries to crowdfund succeeds in raising the funds they're seeking for their medical treatment, but the chance of success is not evenly distributed and, in fact, seems to disadvantage those who are already disadvantaged," he added.

Inequality in medical crowdfunding is among several ethical concerns raised by the practice, added Wilkinson, who has written a number of articles on the topic.

People who are more social media and Internet savvy have an advantage over those who aren't as familiar with, or who don't have access to, that technology. Research also suggests that medical crowdfunding seems to favor those who live in higher-income areas. Campaigns led by White men also have higher success rates than those created by Black people or women.

One study showed campaigns on behalf of children present privacy concerns, especially those that reveal a child's full name, as is the case in up to one third of campaigns for pediatric patients, he noted

Some medical campaigns seek to pay for alternative or complementary treatments that lack scientific evidence of efficacy or safety. Even those campaigns that seek to fund experimental therapies not covered by insurance present issues, Wilkinson added.

"One of the challenges when patients access novel therapies via crowdfunding rather than via a clinical trial is that we, in the wider community, don't learn from that because there's no formal data collection and no research component," he said.

The study was not funded. Dr Saadi reported receiving a grant from the National Institute on Neurological Disorders and Stroke. Wilkinson reported no relevant financial conflicts.

JAMA Neurol. Published July 17, 2023. Abstract

Kelli Whitlock Burton is a reporter for Medscape Medical News covering neurology and psychiatry.

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