Who should our patient advocacy organizations represent?

The answer to this question is, at first glance, blindingly obvious. The patients, of course.

But which patients? The ones who have the condition or disease and know it? Or the many many more who don’t have it yet but will?  

There are an estimated 25,000 people in the United States who  are currently living with ALS. I’m one of them.

There are an estimated 650,000 or more Americans alive today who don’t have ALS yet but who  will get the devastating diagnosis. Maybe in one year, maybe in five, maybe in 40.

Do our US-based ALS organizations have a responsibility to protect and advance the interests of the 650,000 too, or only those of us with the disease now?

It is a fundamental question, laced with moral and policy implications. Each of us volunteering or working in the ALS advocacy, research, and care service space has to answer that question for ourselves as well as demand an answer from our organizations.

If your answer is that our only task is to serve those with ALS now, then policies designed to advance short-term needs and goals should prevail.  

If your answer is that we have an obligation both to those of us diagnosed with ALS and the 650,000 Americans who will get the disease, then the calculus changes. Then the difficult challenge is to balance serving the interests of those with ALS now and the interests of the “next gen” of people with ALS. That balance can and must be achieved, but it requires us to be mindful of the many voices we can’t yet hear, all 650,000 of them.