Article Introduction (Source):
Talking to me with the assistance of a speaking valve, Chris Simon made it clear what he thought of Radicava, a newly approved drug for patients who have amyotrophic lateral sclerosis (ALS).
“It’s more fool’s gold than it is gold,” said Simon, who has ALS and lives in California. He doesn’t plan to take the drug, especially since he has a friend with ALS who wasn’t helped by it–even though his friend flew to Japan to get the treatment before it was available stateside.
“They’re selling hope,” Simon said of marketing efforts around this drug. These include the company’s website for the drug and public relations efforts, such as this news release that we reviewed that describes Radicava as an “uplifting milestone” offering “new hope,” signaling a “new era” of treatment.
This hopeful framing also has found its way into talking points from ALS patient groupsand recent news stories on Radicava–such as this one from Richmond Times-Dispatch and this report from WFMZ-TV in Allentown, Penn. These stories sometimes discuss the cost (~$150,000/year) and the restrictions around prescribing the drug to patients–often casting insurers in a negative light–but stop short of explaining why these restrictions exist.
Information and answers for those diagnosed with ALS, and those assisting someone with ALS.