This comment was posted by the daughter of a woman who has been treated with Enbrel for her Alzheimer's by Dr. Tobinick
Comment:
Submitted by Felicia on Thu, 05/08/2008 - 5:39pm.
My Mom has now recieved 10 injections. The improvements in her are miraculous, especially her Activities of Daily Living. She is happier, more inquisitive, talkative, singing again, helping with things around the house (or at least trying), instead of sitting quietly in her chair all day and night with nothing to live for, becoming a zombie, losing the ability to walk, communicate, and think for herself, and SHE IS HAPPY AGAIN, what could be more important than that! It was such a helpless situation, and now we are seeing her come back to life! We are so fortunate for having been able to receive these treatments, but we need help getting approval for this off-label treatment. The doctor who discovered this treatment has been under a lot of scrutiny, and Amgen, the makers of the drug, won't back the treatment. They say there is no scientific data, but Dr. Tobinick did the small study, in hopes that a clinical trial would be funded. Now, through his private practice and some trained doctors in other states, there are approximately 70 patients receiving this treatment with success. The effective rate overall is 90%. Amgen won't do a trial because of other interests, and because the patent will run out by the time a clinical trial is done, which takes 4 or 5 years. They would lose money if they funded the trial and then the drug goes generic. We need the public to know that this is real, no matter what the "Big Pharma" companies would like you to believe. We need to show them that our Loved Ones lives are more important than the fact that they have invested in other drugs for AD, that aren't even proven to work yet. Please see mine and others youtube videos of our Loved Ones who are getting better. http://www.youtube.com/famc17 and http://www.youtube.com/user/tumates and http://www.youtube.com/user/armoandleo11 It's exciting, yet frustrating at the same time because it is expensive and we need it approved by medicare or insurance or we won't be able to continue. This is NOT a cure, it is a treatment that needs to continue for the rest of my Mom's life. Please let your doctors know about this treatment, and see if they will be trained. Dr. Tobinicks website is: http://www.nrimed.com/, where you can see more video testimonials, and where you can print the study and peer-reviewed journals regarding the study which you can show your doctors. Most doctors either haven't heard of it, or aren't looking at it because there was no clinical trial. It's a vicious circle we need to find a way around.
Thanks, Felicia
Tuesday, June 26, 2007
Mom is getting better with Enbrel for Alzheimer's Treatments
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1 comments:
Felicia is right...Enbrel as a tool in fighting Alzheimer’s has potential. Unfortunately, Amgen appears to be remaining steadfast in their reluctance to do a clinical trial. Enbrel is classed as biologic. That status renders Amgen a large degree of immunity from generics. I believe that ‘other interests’ (that some feel may be caused by a reluctance to do anything since their partner in European distribution for Enbrel has drugs in the pipe-line) is the reason for their current stance.
Treatments within the Tobinick network are expensive. One of his in-network doctors is rumored to be charging $1000 to administer a simple perispinal injection of Enbrel that (with discounts) can be purchased at Walmart for $188. The alternative is to seek out of network treatment.
My suggestion for people interested in learning about the Enbrel potential or using Enbrel as a tool Alzheimer’s are to:
1. Most importantly....Write Amgen requesting the prompt initiation of a clinical trial. According to FDA rules...Only the manufacturer has the right to petition for a clinical trial.
2. Do your homework. Read the black box warning on Enbrel. Visit the Medication for Alzheimer’s Forum on Alzheimer’s Association’s Online Community and read the Enbrel for Alzheimer’s thread. Become aware huge gains in minutes happen most frequently in press reports. If you are still want Enbrel treatments for your loved one set realistic expectations and choose either in-network or out-of-network treatment.
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