More Families Post Videos of Etanercept Results
About a month ago, I posted an update on etanercept treatment of Alzheimer's that included YouTube videos of real people with the disease before and after receiving the treatment. Since then, more videos have been posted, including one featuring a woman in her 50s named Linda. I encourage you to watch it, as well as view the updates that her husband Bob and other caregivers have taken the time to post.Etanercept treatment for Alzheimer's has received inconsistent attention in the media and scientific community, with varying degrees of skepticism and support. If you've read my previous blogs, you know that I approach Alzheimer's research with a critical mind and an open heart. Like others, I want to know whether etanercept is truly effective in a large sample and whether it poses any serious health risks (e.g., the manufacturer of etanercept, which is currently approved for the treatment of rheumatoid arthritis and similar conditions, recently added a warning to its label that the drug can increase susceptibility to tuberculosis).
But the only way to answer these questions is to conduct more research, including a large-scale clinical trial using rigorous methodology. Unfortunately, it takes several different organizations and entities to make this happen, which can be a difficult and protracted process. After seeing the before-and-after videos of Linda and other individuals trapped within the confines of Alzheimer's, it seems all the more urgent and justified to move forward.
Previous Blogs on Etanercept:
- Research Shows Reversal of Alzheimer's Symptoms
- More Thoughts on Etanercept Research
- The Latest on Etanercept Research
- Etanercept Treatment Garners More Attention
Illustration © Alzheimer's Disease Education and Referral Center
Comments
Dr Hill — THANK YOU!! We need help such as yours to get a public clamor to move this forward. The Enbrel injections have helped my husband as well — although I have not posted any YouTube videos. This therapy is the FIRST step towards reversing this horrendous disease. We need Loud Voices to demand the attention and testing it needs to save millions (people and dollars).
Dr. Hill, thank you for keeping an open mind regarding Enbrel for AD. My father is a patient in one of the YouTube videos and I can tell you that the change in him has been remarkable. Please don’t stop calling for more research. That is all we want! A real scientific research project to find out who this treatment works for, and for how long. People are literally dying for accurate information, but all we can get out of Amgen is letters saying there is no data to support using Enbrel for AD. BUT the reason there is no data because they won’t study it! To withhold it from desperate patients and their families is unconscionable, given the anecdotal successes we have witnessed.
Physicians I’ve spoken to say (and I sadly agree) this is classic placebo effect ~ more disturbingly this doctor’s reluctance to begin clinical trials and opt instead to charge desperate caregivers $$$$ for an unproven, off label, possibly dangerous drug is unconscionable - for anyone, let alone a physician.
Thank you Dr. Hill for your encouraging comments. As a first step, do we really need a large scale clinical trial? I would be happy to see any unbiased clinic or university just do a small trial to get the ball rolling. 30 patients for 4 to 6 months should satisfy many of the critics and then encourage real money to be spent, maybe even by Amgen. How about 10 patients receiving Enbrel per Tobinick’s procedure, 10 receiving it in the lower back and 10 receiving a placebo at either of the two locations. This should prove the treatment works.
Let me just say that this is NO placebo effect! Since the treatment is 90% effective, that would mean 90% are having a placebo effect…that is just not possible and has never happened in any trial or study. There are now approximately 80 - 100 patients being treated. Please see the following article in the very well rocgnized New England Journal of Medicine regarding placebos: http://content.nejm.org/cgi/content/full/344/21/1594 The final paragraph says “In conclusion, we found little evidence that placebos in general have powerful clinical effects.
Doctors don’t know everything, they can’t, and even though they are speaking from experience, they just aren’t right everytime!They can’t have time to keep up with everything, so sometimes we have to help. Dr. Tobinick was not reluctant to do a clinical trial, he brought his study to Amgen to give them a the hypothesis regarding the treatment. It was their job to do a Clinical Trial. They refused and then continued to turn their heads the other way and discredit his work, leaving him with the choice of quitting, or treating patients on his own. After seeing the benefits, he chose to keep going under the scrutiny of his colleagues. As for the drug being dangerous, gross sales of Enbrel is over 2 Billion Dollars which means a lot of people are using it. It is an approved drug with side effects, just like every other drug on the market, and the percentages for serious side effects is very low. Alzheimer’s is 100% Fatal, all of us who have brought the treatment to our loved ones decided the benefits outweigh the risks. And, to my joy and 10 others that I know personally that are recieving the treatment, there have been no adverse side effects at all! Let me tell you, I have been through the “ringer” about all the controversy, and all I know is that Mom did improve, and now has seemed to stabilize, after delcining rapidly in the last 6 months. She is back to where she was before her decline 6 months ago, and she is now at least able to enjoy her life, instead of slowly turning into a zombie!
Thanks Carrie for your open mind and listening to us measely caregivers, Felicia
Dr Hill,
What a treat to find a doctor who keeps an open mind and doesn’t categorically say that Enbrel’s positive effect is implausible because he/she didn’t come up with the treatment in the first place.
My husband has been in Dr T’s program for over 3 months and is still doing very well. He had declined rapidly over the year prior to his first treatment but after the first couple of injections of Enbrel, his attitude, conversations, and affect improved substantially. I think at this time he has plateaued but we’re hoping that he will continue to maintain and even improve (even if slowly) as we continue treatment. His quality of life is so much better and he is much better company.
We are grateful for the opportunity to try out this innovative program and to let others know that it is not a placebo effect but a real, honest-to-goodness improvement which we’ve experienced. It is so discouraging to read the words of the naysayers and in essence to be called either stupid or liars. But the saddest thing is that there are many people suffering from this disease who could be helped if the powers-that-be would give this treatment a chance. What do the patients have to lose? There prognosis is a slowly decaying brain and body and eventually death.
Dr. Hill, thank you for reading, watching, thinking, and having an open mind as well as the courage to suggest that an effort should be made to examine the value of off-label Enbrel as a tool in fighting Alzheimer’s. Reading this portion of your blog gave me hope that “silly old ants” might actually be able to “move a rubber tree plant”.
Thanks so much for everyone’s insightful and passionate comments. I hope that even more join the discussion! In regard to Bob’s question — I think a large-scale clinical trial is eventually necessary, but I really like your idea of first having an unbiased university medical center or similar entity undertake a smaller study that still produces reliable results. It would be an important step toward conducting a larger clinical trial down the road.
I encourage others to share their thoughts and ideas about etanercept as a treatment for Alzheimer’s.