In November 2018, the author fell and was diagnosed with ALS, a fatal disease that left him unable to work. He faced challenges accessing experimental therapies for ALS. Legislation was passed to provide public funding for expanded access programs for ALS treatments, but bureaucratic hurdles delayed the availability of these therapies. Meanwhile, many people with ALS have died without access to potential life-extending treatments. The author highlights the need for a seamless system that allows easier access to experimental therapies for those with fatal diseases. His life, along with many others, depends on it.
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FDA expanded access program slow in helping patients
