A Look at the ABCs of ALS During ALS Awareness Month

Awareness Breeds Compassion.
Compassion Drives Enhanced Funding.
Funding Generates Heightened Innovative Intervention Ideas.

It all starts with awareness. May is ALS Awareness Month. It is not a coincidence that I chose three words beginning with the letter “I.” I believe that a single measure of awareness yields a bounty synergistically enlarged. In that spirit, and given that it’s May, it is appropriate to redouble the awareness effort. As physician Dean Ornish said: “Awareness is the first step in healing.” Let’s hope that he is right.

The ideal intervention is — obviously — a cure. And that takes a plethora of ideas. Just one in 1,000 investigated drug compounds enters the U.S. Food and Drug Administration (FDA) approval process. Awareness-motivated funding is vital to populate the idea garden.

Once in the approval pipeline, the rigor demanded translates into uncertain and often glacial progress toward commercial availability. However, there are options to expedite getting a medication on pharmacy shelves. Fast-track, accelerated approval, and priority review are available to hasten broad beneficial use. Awareness-led public opinion may be necessary to influence the inclusion of a candidate ALS therapy into one or more of those designations.

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Following approval, the challenge of affordability may remain. When a medication is new, insurers must decide whether and how to cover it. For example, upon the market entry of Radicava (edaravone), both Blue Cross Blue Shield and Aetna imposed restrictions on its coverage. The decisions were justified by a comparison with the inclusion criteria of Radicava’s Phase 3 clinical study. Participation in ALS clinical studies is notoriously skewed toward the newly diagnosed. To forestall a similar future fallacy in logic, an awareness-inspired public outcry may be necessary.

One effective tool to engender awareness about a person, organization, or cause is the delivery of an “elevator pitch.” The goal is to convey an overall concept or topic in a memorable way, poising the listener for future action. The reason it’s called an elevator pitch is that it should be capable of being presented during a brief elevator ride. During May, I intend to fine-tune a version targeting those who are unfamiliar with ALS. I may dub it my “transfer lift” speech.

Here’s what I have so far:

• During the time it takes to watch the evening news, followed by “60 Minutes” (alternatively, an episode and a half of “Game of Thrones” or three consecutive reruns of “The Big Bang Theory” — audience dependent), someone will learn that they have ALS.
• ALS always kills. It’s never a matter of if, only when.
• Nearly half of all people with ALS die within three years of diagnosis.
• ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries and can affect anyone without warning — even you.
• If the listener has a direct or peripheral military association, I may add that former military personnel are twice as likely to be stricken with the disease.
• The annual incremental cost to live with ALS is over $63,000, and that is without an effective treatment.
• Any breakthrough achieved via ALS research and development may have relevance to Parkinson’s and/or Alzheimer’s diseases.
• Please summon your better angels in considering a donation, and be supportive of policy initiatives favoring rapid access to medications.

All of the sources of human misery compete for the meager resources available. The ALS community needs to be heard. Let’s mount a deafening collective ALS awareness campaign.

“The ultimate value of life depends upon awareness and the power of contemplation rather than upon mere survival.”— Aristotle

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