ALS activism

My response to the FDA's Prescription Drug User Fee Act Patient-Focused Drug Development Meeting

So get this. The FDA just announced a list of 20 diseases that they will focus on over the next 5 years. And guess what disease did not make it on the list, which includes such notables as narcolepsy, diabetic foot infections, and female sexual dysfunction? Not that I have anything against people who suffer from these other diseases, which also include HIV, lung cancer, and hepatitis C. It’s just that, come on, get serious. ALS should be at the top of the list, rather than invisible, mysteriously forgotten by the suits at the FDA, who are listening to paid lobbyists, and not the patients.

So read my response to them below. They are collecting comments from the public before they make their final decision. If you are so inclined, you have until November 1 to comment.

The Evil Empire

I am the father of 2 young children, and last year, I was diagnosed with ALS. This disease has already wreaked havoc in our lives, as it has left me without use of my arms or hands, and with a severely compromised breathing capacity. The best is yet to come, however: I will become increasingly dependent on my foot-control power wheelchair for mobility as the atrophy in my legs and feet continue; as my swallowing and speech continue to decline, I will need to be fed through the feeding tube that has already been implanted, and I will only be able to communicate with the eye gaze tracker hooked up to my computer; and I will soon need to decide whether to die or to accept a locked-in state with invasive artificial ventilation.

I was disappointed to learn that ALS was not on the list of 20 diseases being considered for the FDA's Patient-Focused Drug initiative. I can only assume that, considering a new patient is diagnosed every 90 min., while another dies every 90 min., this is an unfortunate oversight that will surely be corrected.

This disease is among the most universally feared outcomes that a person could be diagnosed with. That we have come 140 years since its discovery without a cure, any reasonable treatment, or even a hint of its cause, is a travesty. Please, for the sake of the 30,000 Americans who currently live with this horrible disease, their caregivers and families, and the 5600 unfortunate souls who will be diagnosed every year, reconsider your position, and help fight ALS.

Thank you,
Aaron Winborn

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The Society for Venturism has chosen me as the recipient of its charity for this year, to hopefully offer me cryonic preservation when the time comes. And this month, Longecity, an excellent forum for the discussion of issues related to extending the lifespan of humans, has offered up a matching grant of up to a thousand dollars to help out! So help out! Please.