How Does the New ALS Drug Impact MAID?

According to the WA Department of Health’s 2020 Death with Dignity Act report, 6.5% of people who participated in the Death with Dignity Act were diagnosed with a neurodegenerative disease, such as amyotrophic lateral sclerosis, or ALS. Reasons for seeking MAID, according the DOH report, include loss of ability to enjoy typical life activities, loss of autonomy, loss of control of bodily functions, all of which are symptoms of ALS.

Yesterday, the FDA approved a new drug to treat ALS, which reportedly can slow the progression of the disease and potentially prolong the life of a person with ALS. According to the FDA, ALS usually leads to death from respiratory failure within 3-5 years of diagnosis; patients with less than 6 months to live may be approved by their physician to access MAID in WA State.

The FDA’s approval of this drug has met with some controversy because of the small study size. Whether ALS patients choose to try medications such as these, let the disease progress naturally, or pursue MAID (when eligible), it is important that those of us who promote choice at end of life support this decision. Deciding to engage in treatment to slow symptom progression or prolong life is an individual choice that should be made by the person experiencing the illness and should be supported by medical providers and, ideally, loved ones. The presence of treatment options does not dictate or necessitate what patients should do.

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