Ending crowdfunding campaigns for unproven treatment a good start, Georgia Tech bioethicist says

Posted December 11, 2019

By Michael Pearson

Georgia Institute of Technology bioethicist Aaron Levine said there is merit in a proposal from researchers at two universities calling on crowdfunding platforms to stop accepting campaigns for unproven medical treatments. But Levine said the proposal could be tough to implement.

Jeremy Snyder of Simon Fraser University and I. Glenn Cohen of Harvard Law School made the call for crowdfunding platforms to stop accepting campaigns for unproven treatments in an article in The Hastings Center Report published Dec. 8. The paper follows a recent Washington Post article on the use of crowdfunding to pay for unproven stem cell treatments at a Florida clinic.

Levine, an associate professor of public policy who was not involved in the study, said crowdfunding campaigns for dubious treatments help clinics that skirt the FDA approval process by providing revenue. They can also help spread misleading information through the social nature of crowdfunding platforms.

Cutting off the funding and word-of-mouth advertising would be beneficial but hard to do, he said.

Patients turn to crowdfunding for all sorts of medical issues, from broken bones and chronic conditions to FDA-approved cancer therapies, and it could be difficult for platforms like GoFundMe to efficiently and accurately determine which treatments are unproven.

Levine argued that what ultimately is needed is stronger regulation and an overhaul of a medical system that places expensive treatments out of reach for too many.

“There’s value in cutting off financing for these unproven treatments, and it has parallels to Google’s decision earlier this year to cut off advertising for some of the clinics that offer them,” said Levine, who recently published his own research on crowdfunding for a particular kind of cell-based cancer therapy.

“But I think what you really want is stronger oversight from the FDA to cut these treatments and clinics off at the source,” he said.

In a paper published in August in The Lancet Oncology, Levine wrote about concerns over the rising use of crowdfunding to gain access to clinical trials for CAR-T cell therapy, a class of personalized cell-based treatments that have shown promise in treating some cancers, but can carry significant costs.

The need to raise money to access the trials, either to pay direct medical costs or indirect costs such as hotel stays, raises ethical issues as well.

“As CAR-T cell therapy expands and moves from a last-resort therapy closer to the front-lines of cancer care, clinical trials will increasingly compare these novel cell therapies versus the existing standard of care,” Levine said in August. “These trials will yield more valuable information if the research participants are representative of the broader patient population, but the need for many patients to crowdfund to access such trials raises questions about how representative the clinical trial population will be.”

Levine studies ethical and policy issues surrounding the development of cell therapies as a researcher associated with the NSF Engineering Research Center for Cell Manufacturing Technologies (CMaT). The center, led by Georgia Tech, seeks to help transform cell-based therapeutics to expand the industry and lower costs.

The School is a unit of the Ivan Allen College of Liberal Arts.