Posted 3/28/23
“You also must be patient. Keep your hopes high, for the day of the Lord’s coming is near.” James 5:8
Here is part 1 of this story: LINK
Welp, it has now been 5 days since the last post and a week since we met the Congress. No real signs of interest. I and several of my fellow AIM members keep up the Tweet storm on Twitter. Sadly, in 2023, there is nobody that we vote for than can make these pronouncements. We have such an administrative state in the US these days that those we vote for are impotent to fight back against those we don’t. If you stick your head out the window and point your ear East you can hear the Founding Fathers spinning like a wood lathe in their graves over what a leviathan the federal government has become. Ike warned of the Military Industrial Complex back in the 50s/60s, but the bigger fear is the bureaucrat industrial complex we are stuck with. Why would a congress who exists primarily for their reelection in many cases these days vote away this shielding from responsibility? They wouldn’t… I am very frustrated in a bipartisan way and feel powerless to fix it. Frankly, I wouldn’t even care that much, but we have a rogue CMS that decided unilaterally, without “following the science” as is all the rage these days, to block Medicare access to this whole class of drugs and, for the first time in the program’s history, a FDA-approved drug is not covered by Medicare. The VA agrees with us and, thankfully, is covering it for veterans. 🙂 However, 2000 people per day are falling out of eligibility for the drug while a rogue part of government flexes its power over another. 6 days have passed…12,000 have fallen from being eligible to not being eligible. So the Twitter battle rages…
I just had one more thought today on the forum, but it is something more of a general thought caused by the forum. A cure…or even treatments…are a terribly long process, much of which is self-inflicted. The system is rigged to make the process slow. It could be said that this was to be sure that knee-jerkin’ doesn’t rule the day. We cannot afford a treatment nor cure that causes harm even as it causes good. We live is such a sue-happy world that a drug like that will get sued out of existence. We can’t force anything because there is nobody we vote for that can put the requisite pressure on the decision-maker to get things done… AND, the lack of bipartisanship makes this bipartisan issue tinged in the background with distrust. Yes, I am frustrated even as I am super encouraged and motivated. I heard many hard stories from fellow sojourners, many of whom were harder than mine. I am not giving up, folks, and I hope you will not either. 🙂
#EndALZ
#MoreTime
#AlzForum
Update: Mom was pretty awake yesterday 🙂 They are knee deep in Covid cases there, so it is still intense, but she battles on. 🙂 Our support group (Zoom and then in-person) is tonight. Our fundraiser for the Longest Day event is slowly coming along. I am working on finding locations, but it has been hard going. I will keep plugging at it. I need a NW, a SE, and a SW location worked out in April so I can make my shirts listing them. 🙂 I may take a roadtrip looking… 😉 Here is my Fundraiser link if you could flip a coin in the ole cup:
https://act.alz.org/site/TR?pg=personal&px=14575499&fr_id=16164
