A Look at the ABCs of ALS During ALS Awareness Month

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.

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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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

14 comments

  1. Fran says:

    all of the sources of human misery compete for the same resources? False? When I donate to a cause, it doesn’t generally mean I’ll stop supporting some other worthy cause. We Need to ask our friends to skip lattes for a month not to ditch The American Heart Association. We need to convince civic leaders to fund health care not new football stadiums.

  2. Dave Reckonin says:

    ” Fast-track, accelerated approval, and priority review are available to hasten broad beneficial use.”

    Oh really? I don’t think so.

    There is certainly a lot of talk available about ‘fast-track, accelerated approval and priority review’ but it’s lip service.

    Radicava gloop seemed to have roller skates on for ALS treatment approval but the fact remains it had been in use for stroke patients in the Far East for several years. That meant safety and tolerance were not an issue. Nothing is fast-tracking.

    Nice article Rick. I enjoyed reading it.

  3. Jude Mathews says:

    Dear Rick:
    May I quote your elevator speech on my facebook page? I’m really trying to spread the word about what is needed.
    Newly diagnosed,

    J. Mathews

  4. Dave Reckonin says:

    I suggest to you both that the ‘God’ concept is of no practical help to you whatsoever and, should he exist, his clear message is that he has no intention of being any help to you.
    The upshot of this refusal to be of any help creates a parallel with a world in which he does not exist because both situations are the same.

    If you are referring to a ‘God’ concept whereby a/your ‘belief’ means that you take comfort from the THOUGHT or THEORY that he may exist, you might or might not accept that others take a very similar comfort from the fact, not a belief or a theory, that the Natural Sciences are working very hard to discover more about, and the cure for, ALS. This is where a clear divergence arises. Comparing the two means drawing an inevitable conclusion that science provides a route way in this lifetime for the potential of treatments and cure whilst a God, real or imagined , does not.

  5. Dave Reckonin says:

    Rick, Are you able to to conjecture on why God is no help to ALS patients and never has been, other than by being a comforting and perhaps reassuring warm-fuzzy type of soma ?

    A pastor once told me that ALS, childhood cancers etc happen because Man brought Sin into the World and so we must all suffer the consequences. For as he says’ Vengeance is Mine.’

    It seems that he is a very violent and retributive God, should he exist, for making little children suffer horrific cancers when they themselves have spent so little time on the Earth and thus not be yet able to contribute to the running total of the planet’s collective volume of sin.

    A more practical logical rational and reasoned line of thought is that we do not have the ‘God’but that we are a pleasant but otherwise solitary shovelful of DNA which thankfully has evolved to be able to think and discriminate between self-deception fantasy and reality.

    What do you think, Rick ?

    • Rick Jobus says:

      Dave, I agree, in part, with your pastor friend. My take is that God, from the beginning, only wanted simple things from us—a loving relationship, and implicit trust in Him. We, after knowing full well the consequences, have consistently acted contrary to his desire. We have broken all covenants, and sin is our default behaviour. The succeeding generational implications were equally clear.

      God helps me by reminding me not to lose heart. “Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:16-18

      As a result of His mercy and grace, through faith, I can secure eternal life. We all can. That is the antithesis of a violent and retributive God.

      He also reminds me to see others as He sees me. He loves me despite my infinite imperfections. He considers me precious, worthwhile, valuable, and redeemable. He wants me in his kingdom. He will grieve if I am not. I need to strive to view others likewise.

      I am praying for you Dave.

  6. With all the research money raised and the years that has past – 150 years – with no cure, maybe we are putting our hope in man when we should look to God who can do the impossible. IF we cannot see God and he created an universe out of something we cannot see but we can see the universe but it is so vast that we cannot see all of it – even with the most powerful telescope. Maybe if everyone affected by ALS (I have contacted patients) and their families, all churches, and all researchers join together and prayed for a cure all at the one time say like next Sunday at 11:15 or Sunday at 10:15 What do we have to lose? There have been a few reversals. But no common thread can be found. What if these people had faith strong enough or were surrounded by people with a strong faith. I believe these reversals were miracles.

    I know prayer works. My son survived a car accident where the car was demolished except where he was sitting. A girl appear to let some one know he was hurt. But disappeared and no could find her. The police officer could not find any evidence of the girl or that another car had been involved. WTVD reported on the accident even coming to my house. No mention of the girl. My son was unconscious and has no memory for a period before the accident and after the accident. He was cut out of car with jaws of life. Duke Hospital staff said he was brain damaged. I said “No he is not”. Several churches prayed for him. We met two boys that were in similar accidents but did not recover fully. My son survived and make a full recovery.

    My ex husband is an alcoholic (40 years) and former drug addiction (15 years). One night his verbal abuse was about to cross the line. A voice said “A home is more than a house”. “You deserve better than this. “ “ Call the police.” Before that voice, I was not brave enough to give up a house that was paid for, and start over.
    Please join us to see if our faith can produce a miracle. Speaking out in faith. Speaking out in faith. “Don’t give up on Miracles” is a song that helps me as well as “Haven’t seen it Yet”. As well as Romans 12:12 Samuel 3 Book of Job

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