Kennedys Disease Community
Avodart Justification for SBMA

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01-10-2015, 05:40 PM
Bob Heitzman
Avodart Justification for SBMA
My insurance Blue Cross/CalPers/CVS is trying to push me to a "generic" for Avodart - Finasteride. The justify this by assuming (they know better) I have BPH diagnoses. I read somewhere there will be a generic towards years end.

I'm sure the issue is there isn't any easy to find reference information that indicates Avodart is a treatment for SBMA symptoms.

Does anyone know of any reference information that would be persuasive to the insurance folks that Avodart is a treatment for SBMA?

I doubt the NIH study on Avodart would be helpful. I don't know what's out there in the world defines which drugs are useful for which treatments, but I need to learn of the one that links Avodart and SBMA.


email:rheitzman at gmail
01-12-2015, 10:50 AM
Ed Meyertholen

There is no other clinical justification for dutasteride than the clinical trial done at NIH. Let me add that I gave the paper to my primary care physician, he then prescribed it and my insurance has always paid their share.

I do not think that Finaseride is the generic version of Avodart (aka dutasteride). I do not think that there is a generic Avodart and only Avodart has been tested for KD.
01-12-2015, 03:36 PM
Bob, I did the same as Ed. My doctor didn't hesitate. Dr. Fischbeck at NIH commented to me that the trial only was for Avodart. He would not recommend a generic drug because they were not part of the trial.

In discussions with my doctor, I told him Dr. Fischbeck's comment to me when I asked if he thought I should give Avodart a try. Dr. Fischbeck said it wouldn't hurt to give it a try because there was a small benefit shown with several of the patients using the drug.

With my healthcare provider, Avodart is a Tier 3 drug meaning it is at the higher end for my out-of-pocket costs. But, I have found it worthwhile.
01-19-2015, 10:51 AM
Dan B
Bob, you can find the results of the study "Dutasteride to Treat Spinal and Bulbar Muscular Atrophy" at this link:
Be sure to click on the "Study Results" tab to get the results.

Another study of dutasteride in SBMA is documented at this link: and this one:

Possibly the reason you are having a problem with Blue Cross is that dutasteride/Avodart is FDA-approved only for treating BPH, not for treating Kennedy's Disease. So they are arguing that finasteride is just as good as dutasteride for BPH, which is irrelevant, but they don't know that. I think you should emphasize to Blue Cross that you have a "rare disease" or "rare disorder" and that is why you need a special treatment. Visit the website of the National Organization for Rare Diseases for information on how to contact your state's Department of Insurance to file a consumer complaint against Blue Cross, and other links that may be helpful.

Good luck. I hope the articles help.