May 31, 2023 2 min read 4 Comments
May 27, 2023
Some other news and tips for you.
1. A Big Pharma's Heart And ALS.
I won't tell you all the ways I am fighting back against my ALS diagnosis because some of it is involves being a junkyard dog.
One of the challenges was getting one of the new meds that slows ALS progression called Relyvrio. It is made by a pharma called Amylyx in Cambridge, Mass.
I didn't have to be a junkyard dog, in this case, to get this med.
This particular pharma understands. Several employees have had loved ones stricken by ALS, including a dad named "Ray." There is no bigger motivation for them, not even the mercantile than to defeat an undefeated disease. They have a certain culture around this disease.
So when CVS Specialty Pharmacy called to say Relyvrio would cost me $3,800...a month....Amylyx stepped in. It is paying for my medicine through it's patient assistance program through the end of the year and then I will reapply.
Do you understand what a mental boost that is? I was told Relyviro was hard to get and too expensive. I have it in my hands because of a little diligence and a lot of good will.
Many of you with health challenges are just regular people like me and you have cleared hurdles.
One more thing. There has not been much change in the outcome of Lou Gehrig's diagnosis in 1939 and my diagnosis 84 years later. ALS has lost something off its fastball because of two drugs approved in the last year by the FDA.
But there needs to be more government funding. This disease is considered rare, but I have now heard from 12 people who had a family member or "close" friend die of ALS.
Either my circle is big, or the data is flawed. Also, this disease hits our age group the hardest (64-70).
I'm trying to develop a plan to add to the crusade to Washington, D.C., for more funding for ALS. This disease is virtually unbeatable. Right now.
If anyone has worked on a crusade for a new drug, please hit me back at firstname.lastname@example.org. I'm just getting started. I'm not dying tomorrow.
2. Some people...
You wonder where they get it from. I don't know how old this woman is and I'm sure she does not do this workout every day. But maybe she does.
3. Do Not Go Gentle...
And they don't quit.
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