Why right to try isn’t working

It’s been a year since President Trump used his first State of the Union address to make a prime-time pitch for right to try, the federal law that aims to help dying patients get access to unapproved drugs. So, I spent the last week trying to answer the question: Now that it’s on the books, how has it impacted dying patients’ lives? What I found in my reporting was heart-wrenching.

I chatted with half a dozen ALS patients — including the families of two of the men so instrumental in the bill’s passage that they were seated next to President Trump during its signing. People with ALS — PALS, as they call themselves — spearheaded the right-to-try movement (three out of four names on the bill were PALS), yet they haven’t had any luck getting access to treatment. Calls to drug companies go unreturned, online pleas to government officials go unanswered, and all the while the men who were smiling onstage at the White House signing ceremony get sicker and sicker.

I also caught up with Sen. Ron Johnson of Wisconsin, the Republican who pushed so hard for the right-to-try law that he threatened to torpedo a huge FDA funding package if Congress didn’t take up the bill, and who even publicly chastised Commissioner Scott Gottlieb for his remarks about how the FDA would implement the law. My question to Johnson: Who’s to blame for patients not getting access? His response: “Nobody is to blame,” and that the law is working as intended.

Curious how those two things square? You’re not the only one. Even academic experts I interviewed say it’s hard to know whether right to try has changed anything or if the law only gave dying patients false hope. I unpack all of that and more in my story. Read more.