This is something that has troubled me for a long time, so I’m linking to a post that draws attention to the problem in a personal way. This is author Jake Seliger:
I am dying of squamous cell carcinoma, and the treatments that might save me are just out of reach. Alex Tabarrok writes about how “when the FDA fails to approve a good drug, people die but the bodies are buried in an invisible graveyard.” I’d like to make that graveyard a little bit more visible because I’m going to be buried in it, in a few weeks or months.
The FDA routinely delays approval of life-saving drugs and routinely denies experimental treatments to people who are dying anyway and can’t possibly have anything to lose. They do it all the time, for everything. The invisible graveyard is filled with millions — not an exaggeration; literally millions — of people who died long before they needed to. This is a difficult problem to solve because the FDA is operating under strong incentives that push them toward delay and denial no matter how much harm that does for how many people.
So, yes, take a look at that invisible graveyard. If more people saw it, the incentives might lessen to the point that the FDA would reform at least a little.
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I was taught: although the sun is rising on these new treatments that may help patients in the future, never forget that the sun is setting on the lives of the patients who are dying from these diseases today.
Yes. The sun need not set just yet for many people who are dying unnecessarily.
The FDA prioritizes protecting its reputation over permitting potentially lifesaving treatments to be provided to people who are actually dying right this minute.
It’s not just tragic for people who are dying either; it’s also tragic for people who are suffering unnecessary pain and disability.
Thank you for drawing attention to this important topic.
In some cases a doctor can apply for permission to get someone on a not-yet-approved drug early – that’s why my mom is still alive. But, I imagine you have to have a doctor who knows how to navigate all that, and I don’t know how far off from approval something can be before you can do that. The process was originally implemented for AIDS patients.