Why lawmakers keep making ‘compassionate use’ requests for controversial doctor

Requesting access to experimental, unapproved treatments from the Food and Drug Administration can sometimes save a patient’s life when no other treatment has worked. But as STAT’s Sheila Kaplan writes, there is a dark side to “compassionate use.”

From 2011 to 2016, 37 members of Congress wrote to the FDA about Stanislaw Burzynski, MD, PhD, who has controversially used an unapproved mixture of peptides to treat rare cancers at his Texas clinic. The treatment has never been shown to work—even though some patients mistakenly believed otherwise—but federal lawmakers continued forwarding letters from constituents to the FDA asking the agency to allow them to use Burzynski’s treatment, which could be seen as legitimizing his practices.

“If Burzynski’s concoction actually cured cancer, we’d know it by now,” said Shannon Brownlee, senior vice president of the Lown Institute. “I’d be shocked if he’s actually conducting a real clinical trial, so I’m not sure what members of Congress think they are doing for their constituents.”

Some families did their research on Burzynski—and have encouraged lawmakers to stop writing to the FDA about his treatments.

Sandy Smith’s son Andrew was being treated at Burzynski’s clinic in 2007 for diffuse intrinsic pontine glioma (DIPG), a cancer which attacks the brain stem. After learning that all other DIPG patients there had died, she pulled her son out of the clinic. Though he died two years later, Smith later wrote to her own congressman in the hopes the FDA would educate other lawmakers about what happens at the clinic.

“I can understand why a member of Congress would want to respond to their constituents and want to be helpful, “ Smith said. “But if they really do not know what is going on—and at the Burzynski clinic it is very difficult to know what is going on—then you have to proceed with caution.”

For more on the FDA’s relationship with Burzynski, even while the Texas Medical Board has been trying to strip him of his medical license, click on the link below: