Nov 2, 2011

Why Can't I Buy Dimebon for Alzheimer's?

What I did care about was that Dotty seemed to be more interested in living her life. She was a more complete, better person.

By Bob DeMarco
Alzheimer's Reading Room

Why can't, I, WE, buy Dimebon for Alzheimer's disease?

TERMINATED. That is the word they used when the Dimebon clinical trial that my mother was enrolled in was abruptly canceled on May 7, 2010.

The termination was caused by the failure of the Dimebon Connection Study. My mother was not enrolled in the that study. But, because the study failed to produce the necessary results for potential FDA approval the rug was pulled from under our feet.

We weren't the only ones. There were more than 2,000 patients enrolled in Dimebon clinical trials. This means at least 1,000 participants received Dimebon. The other participants received a placebo.

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The study was not terminated due to any safety findings. Dimebon was well-tolerated in clinical trials.

Safety was not an issue. The problem was efficacy. In other words, the drug did not provide enough benefit to participants. From a statistical standpoint it did not stop memory loss. There was some benefits registered on the behavior scale.

Now to my point.

Dotty did benefit. While on Dimebon, she was more alert and her behavior was dramatically improved over what I had come to expect.

Keep in mind here, Dotty was diagnosed before entering the clinical trial as being in the moderate to severe stage of Alzheimer's. She scored 14 on the MMSE. She also scored 16 during the trial.

I did ask the personnel at the clinical trial site if they thought that Dotty was showing any improvement. They told me yes.  I asked how?

Here is an example. At the outset of the clinical trial they showed Dotty a picture of a fork. Then asked, what do you with this? She could not say or demonstrate how you use a fork. When they put a fork in her hand she could demonstrate what you do with a fork.

Later in the study, they did the same test over. Sure enough, Dotty looked at the picture of the fork and then demonstrated what you do with a fork.

By the way, by the point in the clinical trial I didn't have to ask anyone anything. I saw with my own eyes, ears, and brains that Dotty was a different person.

How much better?

Hold on tight. Better than she had been in many years. Let me set this straight. I couldn't tell if there was any improvement in Dotty's memory, and if you would like to know the truth, I didn't care.

What I did care about was that Dotty seemed to be more interested in living her life. She was a fuller, better person.

My point. I can accept memory loss. I don't spend much time thinking about Dotty's memory, or what she can or can't remember. What I do care about is the look on Dotty's face, and how she responds to activity.

Dotty clearly looked more there, and was clearly experiencing "more enjoyment".

As my close friends know, I was "dancing on the ceiling".

We are not the only one's that saw benefits from Dimebon. There are several articles and stories on this website from other caregivers that were enrolled in the Dimebon clinical trials.

I know they want an answer to this question.

Why Can't We Buy Dimebon in the United States?

The drug is safe. The drug has been used in Russia since 1983.

And, Dimebon was proven to be safe in the clinical trials.

Your comments are welcome.

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Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 3,101 articles with more than 452,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room