Posted 3:23:23 (I like the number…32323)
First of all, then, I urge that supplications, prayers, intercessions, and thanksgivings be made for all people, for kings and all who are in high positions, that we may lead a peaceful and quiet life, godly and dignified in every way. This is good, and it is pleasing in the sight of God our Savior, who desires all people to be saved and to come to the knowledge of the truth. -1Tim 2:1-4
I have had quite a bit of quality time with Joe at KY3 lately. 🙂 He is a great guy. Our local media is all excellent in helping advocacy for dementia!
The National Alzheimer’s Forum I attended this week went super well!!! We have/had 5 objectives, but the main one is to fight to get MAB-class drugs covered by Medicare. See, an unfunny thing happened on the way to a cure: CMS. Somehow CMS (the body that makes Medicare/Medicaid policy decisions) chose this class of drugs to be the first FDA-approved drugs in the history of Medicare NOT to get coverage. The only way you can get Medicare to cover it is to drive twice a month to one of 33 research hospitals in the country. (KS Kansas and St. Louis are the closest to us). Since it is an infusion and for many an overnight stay would be prudent, it is cost (and health) prohibitive! I never through this term around and get annoyed when others do unwisely, but it is disease discrimination in the truest sense. So, me and 900 of my closest new best friends from all 50 states convened in DC to fight this ruling. We protested quite a while in front of the White House on Monday and then we spent Tuesday talking to every single Congressperson and/or their Legislative staff. Wednesday as we were leaving there was a DHS hearing and we were brought up with a lot of very pointed questions for CMS. Hoping and praying.
Why does it matter? The FDA decides whether a drug works and is safe and is worth the risk. They work with and are the scientists. They have neurologists…the CMS does not. In all transparency, the FDA had reservations about the first drug of this class, called Aducanumab (Aduhelm) even though it was promising. Their issue was that the clinical trials had started and stopped multiple times and the potential side effects could be a problem as well. The second drug of the class, an even (much) better drug called Lecanemab (Leqembi) was iron tight. The trial was superb. The results: If you catch the disease early enough, it stops its progression in its tracks by an average of 26-27% longer than a placebo. Even worse, if possible, CMS had blocked, in advance, any drug of this class and continues to block this one. Great new versions and modifications are pre-blocked without care if they are a cure! When pressed hard, CMS essentially seems to say the results were “not meaningful enough” and are still blocking its coverage from Medicare… with new and possibly better drugs of the class coming VERY soon. Think of it this way…if we can push it back and push it back…it is practically a cure, while we work feverishly finding ways to make it stick. “Not meaningful enough”, in my case, would have meant I would have had nearly 3.75 YEARS more with my mom being pre-symptomatic. She could have gone to my daughter’s graduation! Not meaningful enough, indeed! Phhht!
We are pushing for more research funding, funding amounts to be set by NIH and not by the Alzheimer’s Association’s opinion, a standardized care model, training, and a better support infrastructure.
More will be coming, but the needle was moved quite a bit this week. 🙂 Last week the VA agreed with us and started allowing veterans access! HUGE win!!! We march on and keep fighting! Adelante!!
Thank you for your patience while I was away. My Master’s work finishes this weekend too, so prepare for me to unload a pile of posts soon. 🙂 You all are very encouraging to me and I appreciate each and every one of you in everything you do for seniors, dementia or not. In short: You are the best!
(Senator Schmitt with our Missouri group)
Rep Alford’s LA
Sen. Hawley’s team
Update: Mom was about the same this week in my absence. They had another outbreak of COVID-19 (yes…Covid-2019) but I can mask up and risk it and that is what I will do this evening. 🙂 Easily worth the risk to me 🙂
There is a lot more to write here…stay tuned. Oh, in the meantime, call your congressfolk (House and Senate) and tell them you stand with the Alzheimer’s Association on this. While Congress cannot force this to happen, they can sure put on the heat. They were super cordial and willing to help too. 🙂 All parties, all stripes… Drop an email or a social media post and/or share mine. We need to make “good trouble” as one of our wonderful folks said in the prep day! We need to fix this CMS mess…
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