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How ALS Advocates Have Given Those WIth ALS One Leg Up Over The Next Decade 7-7-24 · OneLegUpAlex Media

• 0:01
  Here's your host, Alex Garrett. Well, I do hope you've enjoyed your
• 0:07
  Fourth of July weekend. And by the way, you know, normally we
• 0:12
  would stay in the city for the fireworks, and it felt a little weird
• 0:16
  to go home, But it was just so hot on July the fourth that
• 0:19
  we end up staying in And I have to say, the fireworks going off
• 0:23
  around us had to make had to be that exact same feeling in seventeen seventy
• 0:27
  six on July fourth, seventeen seventy six, so I can only imagine that
• 0:31
  actually hearing it in your local neighborhoods felt almost like it would have been Philly
• 0:36
  in seventy seventy six when we actually declared the independence, fireworks going off all
• 0:40
  over the place. On that note, July fourth also is special because of
• 0:46
  this moment. Today, I considered my show itself lucky look on the face
• 1:00
  when you're looking around, wouldn't shoot and shoot? You associate to Yelvis,
• 1:08
  what such a child looking mad man? As a standing in name and this
• 1:15
  Paul Clark to day had I been given a bad phrase, but I've got
• 1:25
  an awful lot the Lipoi thank such a humble guy was lou Gerrig and let
• 1:33
  me tell you he did not play a season battling als in nineteen thirty eight
• 1:38
  in Vain. Because I've got some news. See, this is the thing.
• 1:42
  Once June second rolls around. Once June tenth, which is actually Greg's
• 1:47
  birthday. June second is actually the day he passed from ALS. But when
• 1:53
  you get passed those dates, and of course wouldn't get past July the fourth,
• 1:56
  the actual day of the speech. He tended to think, all right,
• 2:00
  well, we'll talk about ALS tomorrow or the next day or next year.
• 2:04
  Really, but I want to continue the conversation daily. That's why I
• 2:10
  signed up for the ALS Association's newsletter. And would you believe it, I
• 2:16
  got a really hopeful sign for those living with ALS today. According to the
• 2:23
  July e newsletter, the National Academies is reporting, after an eighteenth month study
• 2:31
  that there is a roadmap to turn als from fatal to livable within a decade.
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  ALS Association, ALS advocates, and yes, Congress did do something right
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  here. They secured a million dollars in congressional funding for the study. So,
• 2:53
  mister Garrett, you did not make that speech in Vain. You did
• 2:55
  not play with ALS in Vain. We are heeding your call and continuing to
• 3:06
  make the lives of people with ALS even more luckier. Dare I say the
• 3:14
  ALS Association actually send this out and what I did not know was that at
• 3:21
  least thirty thousand people in the US are living with ALS at any given moment,
• 3:28
  a rapidly progressive fatal neurological disease. Veterans have also been found to develop
• 3:35
  ALS more so than non veterans. In twenty twenty two, Congress Director of
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  the National Instuits of Health to commission a National Academy's Committee to recommend key actions
• 3:47
  public, private and non profit sectors should take to make ALS a Liverpool disease
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  in the next ten years. More on this report, by the way,
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  we'll be discussed at the NEXUS conference July fifteenth to seventeenth in Texas in Dallas,
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  Texas. So I love that there's a group of people that took this
• 4:12
  into their own hands in the ALS organization, got Congress involved. Now have
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  veterans with ALS eligible for an array of medical and social service benefits, and
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  beyond that, it's not just a presentation on the field on July fourth or
• 4:30
  June twid around the country of those dealing with ALS. There's a real drive,
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  a real grassroots efforts to get ALS cured for the thousands that live with
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  this disease. I could go through the recommendations. I might, but here's
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  what the CEO of the ALS Association, kalineat Ballist said. She said,
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  this new report is hugely important for the future against of the fight against ALS.
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  We still need to review and discuss each of the individual recommendations, but
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  ticket as a whole, it's clear there needs to be a significant investment in
• 5:16
  ALS research and an overall of how ALS care is delivered and paid for.
• 5:27
  This is also the Americans Disabilities Act month. July is a big month for
• 5:33
  the disabled community. And to hear that this research is providing those with this
• 5:39
  disability more longevity is so exciting and so important to talk about that. Yes,
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  it's not just honoring those with ALS on June and second, June tenth,
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  and July fourth. It is beyond that. And I'm very proud of
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  the Congress sees that it's beyond those four those three dates, and here's what
• 6:02
  they recommend. You know, this was kind of staggering information, if you
• 6:08
  will. Firstly, medications for ALS can cost one hundred and fifty thousand plus
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  dollars a year. This is where the National Academy's found and General can cost
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  tens of thousands of dollars per year. Can lead to lost wages, travel
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  to care, and clinical trials insurance barriers. Interestingly enough, those aliss could
• 6:40
  be denied coverage, could be denied coverage. So I'm gonna run down and
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  I'm gonna put these different links up on the podcast page in the description below.
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  But recommendation three of one three one says to improve the quality of life
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  to make it more livable in the near term, to make it limbital in
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  the near term. CMS and private insurance should act quickly to enable expedited access
• 7:17
  to the following als medical and support services, home base and outpatients support services
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  responses to prior authorized requests within seventy two hours. Services for people with als
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  without requiring functional improvement that's huge, require reimbursement and multidisciplinary care using a bundle
• 7:43
  payment model. This is great. Allowing eligibility for Medicare for people with als
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  regardless of age, employment history, or other Medicare SSDI criteria. This will
• 7:58
  enable all persons with als to access and make full use of ALS care.
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  Congress should act quickly to enable all persons with ALS to access timely specialty ALS
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  care by allowing this eligibility to take place, and then three of three ALS
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  nonprofits to collaborate to centralized resources guiding people with ALS for financial to financial support
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  for mental health services, home modification, durable medical equipment, assistem technology and
• 8:31
  transportation financial support for the caregivers of those with ALS. And I didn't realize
• 8:50
  this. Both deaths deaths from ALS actually results from respiratory failures. So they're
• 8:56
  thinking, well, let's have non invasive vent which will improve the quality of
• 9:01
  life and is a standard care of ALS. Of those of ALS, current
• 9:11
  medical crirements is fifty percent lung function reduction for home ventilation. I think they're
• 9:16
  saying, let's let's get more of a more Medicare coverage for those of the
• 9:22
  refractory illnesses semming from ALS. This is so important that I love that we're
• 9:35
  seeing Congress actually work for a group for this sector of people with disabilities.
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  I selvagely wish we would all there would be many more organizations working hard for
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  those disabilities as much as the ALS advocates are working right now because they're getting
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  things done, they're getting research done, they're in the ear of Congress.
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  Congress approved a one million dollar study, and this study took place from March
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  twenty twenty three to February twenty twenty four, including three virtual workshops, ad
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  hoc meetings, and lived experienced consultants reviewing the report. So lou Gerrig felt
• 10:24
  like the luckiest man, and I don't think he really really really got the
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  gravity of what he the groundwork he lead for those als in the future,
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  for those advocates in the future to really grab on to this and say we're
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  going to support those with als, Congress is now saying we're going to support
• 10:52
  those of ALS. So I just want to bring this to your attention and
• 11:00
  hopefully maybe we'll have someone on prior to or after this conference to discuss more
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  about what that conference said for those with als. But my point as is
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  every July, with every disability, the conversation doesn't stop at the Awareness Month
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  or the Awareness Day. The conversation always going. People with disabilities always grapple
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  with their disability every day. It doesn't because rolled in and out because politics
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  and politicians want to roll it out for one month and then put it back
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  in till next year. That's why Congress doing this for those ALS is so
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  important and should inspire others to get in Congress's ear say you know what,
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  those will ostomes should be more represented, those will seep should be more impresented
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  in Congress. There should be more dialogue for more abilities in the congressional halls
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  of Washington. And take the lead from what ALS, the ALS Association and
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  its partners and its advocates done to secure one million dollars funding for this disease.
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  Because yes, we may have a gala every year at City at Gracie
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  Mansion for those disabilities on July twenty sixth, but the battle ranges on every
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  day. For some, it's a fight to wake up every day, and
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  they do it, and they do it at will, with with such power
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  to keep going. So I'm glad ALS is saying we're not just gonna folks
• 13:00
  be the centerive attention for one day two days. We're going to keep being
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  in the spotlight for those with ALS. So I implore all people with disabilities,
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  whatever the quote unquote condition, I hate the work condition, but whatever
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  the condition might be, or the disability might be. You too can get
• 13:28
  this kind of action done if we just put our mind to it, our
• 13:31
  hearts to it, and look to the ALS Association, who's literally written the
• 13:46
  book on advocacy for those who disabled based on this report and getting this report
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  done alone. So yes, we can replay this speech every year on July
• 13:58
  fourth, we can play on June second, we can wear the number four.
• 14:03
  But the backbone of all of this awareness is driving the ship even more
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  to finding results. And I'm just so proud that the ALS Association is proud
• 14:16
  to report that is able to report this to find answers as a result of
• 14:24
  an eighteen month study by the National Academy, a roadmap for turning als from
• 14:31
  fatal to livable. More than links below. Thanks for listening to this edition
• 14:37
  of the Alex Garrett Podcast Network