Responding to why your doctor hasn't conta... - PSP Association

PSP Association
6,924 members9,447 posts

Responding to why your doctor hasn't contacted a neurologist that is willing to share his knowledge using a drug that slows down PSP

grafixapn
grafixapn

I received replies to my post about the lack of your doctor's contacting my wife's neurologist due to the high cost of the drug. The cost of the drug is outrageous. If purchased in the USA the cost is $14,000 US for 28 capsules. I found a seller willing to accept in round numbers and based on the quantity $700 for the same drug made by the same manufacturer.

In my original post dated a few months ago, I explained the purpose of why I talked my wife's neurologist into taking calls from other doctors. If you recall, my hope was to get between 50 and hopefully 100 people with PSP to have their doctor contact Dr. Samanta with the hope that he would be able to collect data from each PSP patient (no names of patients are needed). Hopefully between 20 and 40 of those would be willing to purchase the drug knowing that insurance wouldn't pay for it would also provide their data too, and the combined data would be analyzed, Then a graduate student who would take the data and run it through a statistical computer program. The goal is to have a graduate student write a paper that would be published showing that taking the drug, known not yo be a cure, will reduced the progression of PSP down to a snail's pace.

The purpose of this paper is to show the FDA that the drug should be listed as an accepted treatment for PSP and therefore be covered by health insurance.

The sad fact is many who participate in this off-beat study won't see any benefits, as it would take 2 years of gathering data for the graduate student's paper to have any value.

On the positive side, those taking the drug, if the 5 people who are currently taking the drug continues to be true, all who take the drug should benefit, but we don't know to what degree, and even for how long.

Due to the small numbers of people who get PSP, together with them scattered over the globe, a standard study isn't practical. This is why I proposed having my wife's doctor, who volunteered to be the center of collecting the data, to show the full value of taking the drug.

As some have pointed out, they are unable to afford the cost of the drug. I wish there was a way that everyone could afford the drug, but their data is also important. As with all studies, there are those who receive a placebo. The date from patients not taking the drug becomes what is called the control.

Before anyone gets upset, By the time this off-beat study is complete, even my wife most likely will be gone. If anyone thinks that I will in some way benefit, they are wrong! If we want the future generation to have the best options and at some time a cure, we need to join together and allow our data to be part of what makes it easier for those to come after us.

They say that a journey starts with a single step. Unless we all agree to be part of that first step there will be more families that loss a loved one. With each year that goes by, my wife sees the current group of members to our support group die away. In the last 3, almost 4 years, those members that came to our local support group have all passed away.

Finding a drug that helps PSP wasn't easy, but now that a drug has been found, we need doctors around the globe to at least know of it, and prescribe it. Also needed is the results of patients who are taking the drug as well as those not taking the drug. Everyone's data is also needed. I understand that many will be unable to afford the drug. But until we can force the DFA to recognize there is a viable treatment, more will die. What I'm asking is for everyone with PSP to get involved to change how this horrible disease is treated. With your help and those that come after you can changes be made.

I'm sorry that not all can afford the cost of this drug. However, with your help we can change things.

Last thing, please don't kill the messenger...

Andy

4 Replies
oldestnewest

Hi Andy,

I certainly applaud you and your wife's approach to PSP treatment. And encouraging others to participate in your "study." Drug studies globally for PSP are indeed possible. That's been proven over the last several years. Perhaps it would be helpful if your wife's neurologist wrote an open letter about what he'd like to see?

Robin

grafixapn
grafixapn
in reply to rriddle

I will be seeing him in a few days and will ask him?

Richard33
Richard33
in reply to grafixapn

Andy,

In case you do not know Robin Riddle is CEO of the Brain Support Network. It would definitely help if you could get her organisation's support for your project.

Keep plugging away!

Richard

grafixapn
grafixapn
in reply to Richard33

My wife and were volunteered by our local sypport group to be part of a PSP conference. I met Robin there. I know much more now, but I shared what I learned back then, and got the not interested reply. Many at my local PSP group have used Robin's services to harvest brains.

You may also like...