Collecting good information on patient outcomes can prove if those new Alzheimer's drugs are worth their hefty price. Will CMS get it right?
As someone whose mother died of ALZ in 2015 at 80 after 8 years of decline and little evidence any of the drugs then were helping, we all hoped a medication or other treatment would one day be available. This outrageously expensive new drug does not appear to be a panacea or even in the realm of showing a positive benefit to the patient vs the exorbitant cost. Her team at Harvard was considered among the best in the field at the time and even they didn’t want to get our hopes up about any effective treatments or prevention emerging for a long time.
I am trying to do everything I can to minimize my chances of getting ALZ, but it’s hard to believe the dice aren’t already cast. As I am half Ashkenazi but also half Safardi, maybe that will help; I am healthier than my mom and have a different constitution more in line with my Sephardi side and my 94 yo Sephardi dad than my Ashkenazi mother’s. I feel like this new drug is not worth it based on the relatively little we know about preventing or treating ALZ should I ever show signs of this horrific disease.
Merrill, thanks for writing this great piece and sharing your personal family story and concerns.
Maybe our children will have a true way to prevent or treat ALZ, but I doubt our generation will, even though our experts continue to try to find drugs to make a meaningfully better quality of life with ALZ possible. I applaud the teams working on new drugs, but please don’t get our hopes up or take our savings until there is meaningful success.
These drugs are of less than minimal benefit when you dig into the measurement the companies used to determine if they work. Slowing the decline by 4-7 months means patients did better on a questionaire that included more than 2 dozen questions. The difference between placebo arm and drug arm was a tiny fraction of the questions. So the bottom line is you take a drug that causes brain bleeds, strokes etc and see no benefit that is perceivable to patients or family -- despite the testimonials on TV ads by family members claiming to see a marked improvement. Placebo effect is alive and well. Color me skeptical of the whole amyloid theory. I hope we do get a treatment that works, but in the meantime what Medicare should be paying for is home-based care for patients and their families.
IMAGINE - if Big Pharma is successful in getting Wegovy covered by Medicare, an 80 year-old obese diabetic showing signs of cognitive decline could be prescribed both Leqembi and Wegovy at a cost to taxpayers over $100,000 a year. Does the marginal benefit outweigh the risks? Doubtful.
The sad, even tragic, thing is that providing caregiver assistance is NEVER on the menu because of Prasad's law. It's yes the same amount of taxpayer money, and both could juice the economy to some extent, but that's off the table of course as it's out of sync with the real - not ostensible - goals of the capitalist medical system, which is interested in concentrating, not dispersing, wealth: