Join Me in Advancing ALS Awareness Beyond May

Join Me in Advancing ALS Awareness Beyond May

The sun is setting on another ALS Awareness Month. If we’ve been successful at drawing attention to the disease, we’ve reminded those who are untouched by its tortuous path that ALS is an indiscriminate, relentless, amoral, sadistic, Machiavellian monster.

But to what end? Pity is superfluous and attention-fleeting; empathy is impossible. I believe that the true measure of an awareness campaign’s success is how well people are poised for future action. Will they contribute to fundraising campaigns? Will they advocate on our behalf when regulatory decisions are being rendered? Only time and the residual memory of May’s message will tell unless the potency of our annual awareness initiative is periodically refreshed. Going forward that will be my intent.

I have raised over $35,000 to combat ALS. The lion’s share of this has come from my network of friends. In the following months, to maintain a sense of urgency, I will distribute occasional broadcast messages to past donors and hoped-for future ones. The content will include highlights of ongoing research, a summary of cumulative ALS philanthropy, a heads-up for upcoming fundraising efforts, and a “thank you” for their role in helping to prop me up.

I will post information on social media about ALS current events. Each week ALS News Today publishes news reports regarding ALS. Combined with other sources, I have upward of 40 options to choose from each month to promote ALS cognizance.

I will write to every 2020 presidential candidate and my congressional representatives alerting them to the unlawful adjudication of Medicare claims relative to home health for ALS patients. I will request an investigation. I envision my letter to contain the following:

“I am reaching out to you hopeful of addressing a chronic issue of denied services for Medicare patients across the country. These services which are legally allowable entail home health and are being refused by Home Health Agencies (HHA) under a blatantly false misrepresentation of the Code of Federal Regulations. I suspect the situation to be systemic.

“This denial of services is contrary to what Medicare promises as legally allowable services. According to Medicare’s website, we are entitled to up to 35 hours per week combined of nursing, home health aide services, physical therapy, speech-language pathology services, and occupational therapy as medically necessary and reasonable. Yet beneficiaries are being refused.

“Your Medicare constituents need your help and would like to know that you are in our corner.”

In a separate missive, I will point out the impossible ALS math of the average survival time from diagnosis being three years, while the typical timespan for Phase 3 clinical trial and treatment approval is five years. I will then ask that they author or sponsor legislation streamlining the approval process for untreatable, terminal diseases. Both letters will contain a petition for the appropriation of research funding and pack plenty of emotion.

I will also craft similar correspondences to “60 Minutes,” “Last Week Tonight with John Oliver,” NBC, ABC, CNN, Fox, the U.S. Food and Drug Administration, the ALS Association, and the Muscular Dystrophy Association.

I realize that my pleas will be delivered to a gatekeeper’s mailbox. Where the correspondence will go from there — if anywhere — is problematic. Of course, if there are similar communications from multiple sources the issues become more difficult to ignore. And if the gatekeeper is inundated with messages on the same topic it makes it near impossible to overlook.

This is why I invite you to join me in perpetuating ALS awareness in the manner that you choose and to the extent that you can.

Promoting passage of the ALS Disability Insurance Access Act might be an initial timely rallying point keeping our struggle visible while leading to beneficial impact.

Whether by apparent harmony or perceived cacophony, let’s be heard!

“There is only one thing in the world worse than being talked about, and that is not being talked about.” ―Oscar Wilde, “The Picture of Dorian Gray.”

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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.

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4 comments

  1. Randy says:

    If ALS had the same research and effort as cancer research has there would be advancements in a cure! ALS is so underfunded . This article is right on ,everything you have to fight for!

  2. Patricia Riascos says:

    You have been very busy Rick, congratulations on your success! I will like to copy (if this is ok with you) the contents of your letter to send it to my congresswoman. It is true that some of this “noise” we make will go to deaf ears but something has to work. It will be a good idea if as many as PALS as possible would submit a similar letter to their congressperson.

    I have been calling to different agencies (who accept medicare). The apparently have their rehearsed techniques.

    As soon as I mention the “M” word they say something lie this:
    “Oh! but we only take critical patients” or
    “We don’t even hire home aid workers because medicare doesn’t pay for those services”.
    One agency was fine with it but then said the only ONE employee was close to my area and she didn’t want to work 4 hours, or cook, or evenings! WTH!!!

    All their websites clearly state that they DO offer the services.

    Thanks again Rick for all your hard work.

    • Rick Jobus says:

      Pat,
      Yes, by all means, use any of the example verbiage that you see fit.

      When approaching the HHAs, perhaps inquire first about whether they treat people with ALS. If they answer yes, and they are Medicare certified, it may position us better for recourse.

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