by Sheila Kaplan
August 29, 2016
WASHINGTON — The call to Congressman Ted Yoho’s office was a matter of life and death: A constituent was seeking help for a 5-year-old great-nephew who was suffering from a terrible brain tumor.
Could the Florida Republican push the Food and Drug Administration to give the boy access to an unapproved drug treatment that the caller had heard would help? Yoho’s office agreed.
“This treatment is the only treatment that has been successful in treating a DIPG brain tumor,” an aide wrote in an email to the FDA last July. “This is an urgent request.”
Yoho’s office, though, was wrong. The treatment, developed by a controversial Texas doctor named Stanislaw Burzynski to treat a rare form of cancer, has never been shown to be successful. Yet, for years, patients have continued to seek Burzynski out, and to ask their representatives in Congress to intervene on their behalf.
From 2011 to 2016, 37 members of Congress wrote to the FDA about Burzynski, several of them numerous times, according to documents obtained by STAT under the Freedom of Information Act. Most of the lawmakers asked the agency to grants constituents “compassionate use exemptions” so that they could try his unapproved drugs, or to allow his clinical trials to proceed.
Burzynski told STAT that the “interventions by lawmakers were helpful.”
Other letters, however, reflect the long-standing allegations against Burzynski, who has been cited by the FDA in dozens of cases in which patients have reported bad reactions to his treatment — a mix of peptides — or even died. In those letters, the lawmakers ask the agency to shut down the doctor’s clinical trials.
Lawmakers routinely appeal to government agencies on behalf of constituents in need of medical assistance. But in Burzynski’s case, the doctor’s critics say, the congressional advocacy risks giving the terminally ill and their families a false sense of hope, while also conferring a measure of legitimacy on him that many believe he does not deserve.
On its website, the Burzynski clinic describes itself as a “nationally and internationally recognized cancer center” and promises “cutting edge” treatment. Critics see things differently.
“If Burzynski’s concoction actually cured cancer, we’d know it by now,” said Shannon Brownlee, senior vice president of the Lown Institute, a Boston health care think tank. “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.”