Posted 5/3/23
Bright eyes gladden the heart;
Good news puts fat on the bones. -Proverbs 15:30
or, if you are on a diet,
Like cold water to a weary soul,
So is good news from a distant land. -Prov. 25:25
It is not super often when I let articles speak for themselves without beating them like a dead horse, but this one I will kind of do just that…sort of. READ THIS:
https://www.alz.org/news/2023/association-statement-donanemab
This is VERY good news…and a call to action even further.
A couple of bullet points:
- If a drug name in our world ends with the letters -MAB, that means they were derived from Monoclonal Antibodies.
- Monoclonal Antibodies, for some extremely strange and, frankly, discriminatory reason, are approved by the FDA but NOT covered by Medicare. ALL DRUGS in this class have the same fate.
- This is the only whole class with this terrible treatment. EVER.
- CMS says they will reverse the decision if….uhhh…errr… well…they may reverse this in July
- The VA approved the class
- The FDA is the science, CMS is primarily an added, unelected regulatory entity who makes enormous pronouncements on society without fear of being replaced through election.
- These drugs REQUIRE early detection and use EARLY in the disease. They stop the progression, they do not rewind the tape. Not even a Blockbuster sticker will get the tape rewound…
- 2,000 people per day progress to the point of it being too late for this class of drugs
- 2 people have died as a side effect of this drug (and other health considerations. EVERY person with the disease dies without it unless something else beats the disease to the punch. Tens of thousands tested…it is a typical amount of risk).
Now back to the article. Donanemab has a lot of promise. The whole class keeps getting better and better results, but how long will these companies keep trying when the biggest funder isn’t paying? From the article:
“Most encouragingly, the company reports that nearly half (47%) of the study participants taking donanemab had no decline of cognition and function for one year (compared to 29% on placebo). Donanemab slowed clinical decline by 35% compared to placebo on the primary outcome measure and resulted in 40% less decline in the ability to perform activities of daily living.”
The first part of this paragraph, while sounding discouraging, isn’t really unexpected. “No Decline” can be offered as an answer for multiple reasons. However, the 2nd part of the paragraph is where the rubber meets the road. These typically use a technique called SOB. (Insert teenage joke here 😉 ) In this case, as mentioned in a previous article, SOB means Sum of the Boxes. Sum we get…add’em up. But what boxes? Here is an explanation:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4049432/
or even easier to understand:
Bottom line…they check a bunch of critical measures (domains) in a way that really drills down to understand how the person is doing! Then they sum of the scores at each of the domains checked. If the score is good, the drug is doing good things. Donanemab is doing good things. So is the rest of the class and one should expect a continued slope of goodness. 😉
If you want something that will get this name stuck in your head, say it to the beat of this Muppets video:
https://youtu.be/8N_tupPBtWQ
Here is my Karaoke version so you can practice saying or singing the name “donanemab” :
This is worth your donation all by itself!!! It is obvious a great deal of time and technology was required here! LOL… (Coughing sounds…)
OK…back to the article, already in progress
*******My expectation/prediction for a highly effective treatment/prevention/disease delay the next 2-4 years:
-Enter: A cocktail of -MAB drugs attacking BA and Tau, both in what is already formed (clearance…and I am not talking about the yellow section of Wal-Mart…I mean clearing out the plaque/tangles) and in stopping new formation like this one seems to help with (The latter…and many other possible helps are also more helpful if you have one or both APOE-4 mutations.)
-Anti-Inflammation drugs
-A strict-ish, very heart-healthy (MIND/Mediterranean) diet
-Sleep interventions
-BP and blood sugar interventions as needed.
-Robust testing, starting at 40-50 years old. This can be accomplished with the soon-to-be-approved blood tests and a genetic screen. These drugs and interventions require early detection to work best.
Cliff’s notes, final summary:
https://youtu.be/nd8SJnqysqI
******So what next? What can you or I do to keep fighting? Here are a few ideas:
Join AIM. AIM (The Alzheimer’s Impact Movement) is the advocacy wing of the cause. We lovingly contact our legislators and others and tell our stories. I am a member and always will be. You should be a member too. 🙂
Donate: Here is my Longest Day event in June. I don’t keep a penny…it all goes to them. 🙂 I know, the private Electric supersonic jet I fly to work speaks otherwise, but i assure you it is true. 😉 LINK More info can be found here:
Walk in a Walk to End Alzheimer’s event near you this fall (September 23rd in Springfield, where I WALK. Here is my team for that…join and/or donate:
https://act.alz.org/site/TR?pg=personal&px=14575499&fr_id=16677
Here is the general Walk signup page:
https://act.alz.org/site/TR/Walk2023/MO-GreaterMissouri?pg=entry&fr_id=16677
Learn about the disease and help others.
Volunteer at Alzheimer’s Association events or committees. I can help with that.
Help your local Area Agency on Aging. SeniorAge, my employer and an OUTSTANDING organization does a tremendous amount for folks with dementia and their caregivers. You can donate to our agency here: LINK (Note…I also do not get $ from this. 🙂 Notice the trend…?) Click Donate and choose Runnin’ til I’m Purple as the designation. 🙂
We are now entering the treatment era. We will find a cure. We will. WE will #EndALZ
Thank you
Update:
Mom was doing pretty well since she lost her roommate. She has a new one now and is sleepier, probably caused by unexpected sounds and the like. I will see her tonight and will update here soon. She is nearly 14 years in…only 3% of folks with her stripe of the disease make it this far. She is a soldier! Always has been…
Runnin’ Til I’m Purple/4C4 update: I am behind both in fundraising and in exercise. I am now on a 5k/per day in May plan where I will run at least a 5k every day. I realize my event is stairs, but endurance and leg strength is important too. I have a stair at home I am working on and I will do stairs for several hours on weekend afternoons. We are just 6-7 weeks away if my counting is correct! Zoinks! The T-Shirt ordering will be available soon… 🙂 Hopefully this week. 🙂
Final note: The dead horse is now super dead… Elmer’s even says it is too dead for them…
1 thought on “Some Good News is Always Welcome…and some of my best Karaoke!”