Here’s a hypothetical question for you all: How effective does a neuroprotective drug have to be for you to want to use it?
What prompted this question is the recent FDA approval of a new drug to slow the progression of ALS (Lou Gehrig disease). It gives the patient, on average, 25% more survival time. Now, suppose a drug to slow the progression of PSP provided the same benefit?
The average person with PSP received the correct diagnosis about 3½ years after the first symptoms appear and, with currently available treatment, die an average of 4 years later. So if a new drug slowed the progression by 25% and is started immediately after the diagnosis of PSP is made, then that 4 years becomes 5 years – not much of an improvement, but better than nothing.
The cost of Relyvrio for ALS is $158,000 per year. The cost of Aduhelm, which was approved last year for slowing the progression of Alzheimer’s disease, is $28,000. Let’s say our hypothetical PSP drug splits this difference, at $93,000. We don’t know how much of that would be covered by the various drug insurance plans, and of course, not everyone has drug insurance.
Let’s assume that the hypothetical PSP drug has no important side effects and that it requires a monthly intravenous infusion lasting 2 or 3 hours. (Some of the experimental PSP drugs are just oral pills and one is an injection every 3 months into the spinal fluid, as for a spinal tap.)
So, my question boils down to this: Would you opt to receive this PSP drug with a 25% slowing benefit – or not? The benefit to the average patient would be one more year of survival – more for some, less for others.
A point in favor: The drug wouldn’t just prolong the final year, when the person is most disabled. Rather, it would prolong each year of those 4, so that the first year’s mild level of disability would persist for 15 months rather than 12, and so on.
Two points against: 1) You’d have to take the drug for the rest of your life, or until something better came along. 2) Future participation in a clinical trial of a potentially better drug might not be allowed for people already on another PSP-protective drug.
Any thoughts for my highly unscientific survey would be appreciated. Click “Leave a comment” just below this line. Feel free to explain your thinking.
PSP Blog 
As someone who has watched two members of my family suffer with PSP (grandfather and mother), One additional year with them would be priceless. I would be all for it. I would sell all of my assets to buy that treatment and additional time with my mother and grandfather, if I could. Even if it meant living in a tent for the rest of my life.
I can’t put myself in the shoes of the sufferer. But I suspect that sentiment would be the same as long as I still have the ability to laugh, smile, talk and enjoy the company of my love ones. I would also have hope that additional breakthrough treatments could come to fruition during the extended time.
Quality of life and financial wherewithal would determine how long to take the med. While everyone defines quality of life differently, using this scenario and in cold analysis, I would consider taking for the first 2 years of the 4, recognizing meds are rarely reapproached/removed b/c one no longer wants to prolong quality.
I completely agree with Joey. My husband has been diagosed with psp, and I would do anything to have him with us longer, and with a good quality of life. We have to work with what we have, and hope and dream that a better solution will be coming in the near future.
I also hope that the drugs that are on trial for psp, prove to have a better result and can give these patients a better and longer life.
Yes. I would do almost anything to have another year to spend with my husband and to watch my grandchildren as they grow.
Mosr definitely! I will do whatever necessary to live a longer life ..it means so much that research is being done to find ways to improve and prolong our lifes! Thank you for this interesting blog!