Etanercept Treatment for Alzheimer's Featured on National News Program
The Wednesday edition of The Morning Show with Mike and Juliet on Fox News featured a segment on etanercept treatment for Alzheimer's disease. I was excited to see it since etanercept treatment and associated TNF theories don't seem to receive as much attention as theories about beta amyloid and tau.My excitement waned as I realized that Dr. Edward Tobinick, the pioneer of perispinal etanercept treatment, and one of his patient's caregivers were outnumbered by a three-person panel that essentially dismissed his research -- including five peer-reviewed scientific studies -- and the testimony of the daughter of someone who has experienced positive results from the treatment.
For those who follow my blog, I probably sound like a broken record here, but I can't stress this enough: Dr. Tobinick has never said that his research is the final statement on etanercept research. What he's done is what most researchers do when they think they're on to something -- conduct a series of small-scale clinical trials to show evidence that larger, double-blind, controlled clinical trials should be pursued.
The video clip that appears on the program's website only shows the first part of the segment, before the panel is asked to comment on the treatment method. You don't see how many times Dr. Tobinick was cut off, how panel members called his work biased and unscientific, or how the caregiver who could give the most direct account of the treatment's effectiveness was given literally only one minute to speak. But millions of people across America who watched the show in real time saw all of these things.
I'll say it again: Yes, more research needs to be conducted on etanercept treatment for Alzheimer's. Yes, the research needs to involve additional researchers and organizations and should be conducted on a larger scale with the required checks and balances. But aren't we all supposed to be working toward the same goal -- finding a cure for Alzheimer's disease? It seems like mutual respect and cooperation, including pooling resources to explore potentially promising treatments, would best serve the millions of families facing Alzheimer's disease.
I encourage anyone who watched the show to post a comment and tell us your thoughts.
Previous blogs about etanercept:
- ICAD Review: Where Was the News Briefing About TNF?
- Etanercept Research Continues to Spawn Hope, Criticism
Illustration © Alzheimer's Disease Education & Referral Center
Comments
Dear Carrie,
Thank you again for keeping an open mind!
I knew about the show, and spoke to Dr. T and Sheri Fenn the night before. I recorded it, and watched it knowing that they were sent to a gauntlett! As I watched, I wasn’t as disappointed as I thought I would be. Dr. T held his own. The “scientists/experts” never came out and said that this treatment didn’t work…of course they didn’t, it does work! They danced around with the “it isn’t scientific”, “we need more studies”, etc. Dr. Doraiswamy first said it IS possible, but it needs to be studied. He then said that all the Anti-inflammatory drugs they have tried haven’t worked…THEY NEVER TRIED ETANERCEPT! Dr. Doraiswamy was not an unbiased observer. He has many conflicts of interest to the Perispinal Etanercept Treatment. He has disclosed in recent publications that he has received research grants and honoraria from Pfizer, Eisai, Elan,
Forest, Novartis, Myriad, Jannsen, GlaxoSmithKline, and Lilly. That’s nine different drug companies, five of which are manufacturing Alzheimer Drugs:
Pfizer: aricept
Eisai: aricept
Elan: bap
Forest: Namenda
Myriad: Flurizan
How can he be unbiased when he is being paid to consult physicians on these other drugs? The “medical expert” they had on the show, didn’t even do enough research to know that Dr. T has done studies, and that he wasn’t disciplined for the use of this treatment…or maybe he did, but decided to say it out loud anyway to discredit Dr. T. Sheri Fenn wanted to say so much more, and they didn’t give her a chance. She flew in from Oklahoma to be with Dr. T, and now feels terrible. I think she did fine. She said it works, her Mom is doing great and living on her own with her Father. They tried to ambush them, and in my opinion failed miserably. Why? Because it’s real, and even though this world is full of talking heads that are only out for their own financial gain, the truth is going to win out…it has to! My Mom is better, this treatment works. Millions of people with AD can be saved right now, and all that much of the media and the pharma companies are trying to do is stop it. Obsurd!!!
Well sorry, they can’t stop me, Sheri or Dr. T, and all the others that know this works.
They keep talking about how dangerous Enbrel is…come on, enough already. My Mom has been on it for over 4 months now, just went through major surgery and is healing just fine! And, since the surgery, I got her back in for a treatment and again, her eyes opened up and she is much more reactive and calm. Placebo effect, SHUT UP already about the placebo effect. In studies, the placebo group always does worse than the patients getting the drug(if the drug works), like in the Elan study. Why didn’t their placebo group score better on the MMSE scores like Dr. T’s patients did? Yes, with the treatment they scored BETTER than their original scores…not declined slower. Everyone needs to call Dr. T’s office and investigate this. Make up your own minds. His website has all his publications, latest articles and information:
http://www.nrimed.com/index1.html
Amgen needs to put their tail between their legs and admit they made a mistake, and fix it by doing a Clinical Trial. But more importantly, we need the FDA to do a fast track approval in the meantime so that more people have access to this treatment NOW. This is my goal!
Thank you so much for keeping this subject active!
Felicia McColl
#1 I am angry that so much time has been wasted. My Mom’s quality of life would be so much better if those in power would have looked into this further just five years ago! As always, incompetence and $ seemed to be the issue. It’s time for those to get off their yachts and help those in desperate need and I mean DESPERATE!
#2 Felicia - You Go Girl! I can’t wait to see you on Oprah to cheer you on AND finally get more people angry to pressure those to do something NOW.
Thank you Dr. Hill for writing the article.
Dear Carrie,
Thank you so much for covering this story. And, for encouraging researchers, not to attack each other, but to work together to rid the world of this disease.
I was the caregiver that was on the Fox news show. I was shocked that we were totally ambushed and out numbered.
The producer called me before the show and told me that it was going to be a show about Dr. Tobinick’s method. They said they wanted me, as a caregiver, to talk about the effects of the treatment on my mother. I told him that the drug had impacted our lives so much that my 70 yr. old mother, who we had been told was declining so rapidly that she might soon need outside care, was able to live on her own with my 81 year old father. They told me they wanted me to share this on the show. They even wanted a picture of her, which of course they didn’t use.
I can’t even express how saddened I was that the millions of people that needed to hear what Dr. Tobinick and I had to say,were not given a fair chance to do so. People on aricept and namenda are dying every day. They need to know that there is another option that is available NOW.
Do those so called experts think that a person with this dreadful disease cares that there might be side effects? If it offers a person a chance of getting better, remembering the people they love, and keeps them from lying around in a horrible state waiting to die, isn’t it a risk most anyone would take? This is a terminal disease. Most people with a terminal disease are willing to risk some side effects for a chance to live.
Instead of letting us share this, Fox brings on three “experts” and lets them speak freely. They chose not to disclose that Dr. Doraiswamy, who was so quick to totally dismiss Dr.Tobinick and I, was a paid advocate for the drug companies that make aricept and namenda. He doesn’t care about working together. His mission must be to make sure that the makers of aricept and namenda keep on getting rich,by not letting anyone know there is any other option. I am sure this keeps him rich also.
As the daughter of a sufferer of this disease, my one aim in life was to find something better than what was being offered. We found that in Dr. Tobinick’s treatment. That was what I thought I was going to be able to share on the show. I wanted to give people hope.
Before I was interupted mid-sentence, I was going to say that Dr. Tobinick had given me my mother back with his treatment and that while on only aricept and Namenda, she had steadily declined. But of course, I was not given the chance.
I just wish a program or newspaper
article would give us, the patients and family members of Dr. Tobinick, a chance to be heard. 5 million people are dying, while the drug companies fight to keep us
silent and refusing to do their own trials on Dr. Tobinick’s method.
Well, I refuse to be silent while people are losing their minds and dying a horrible death. My only agenda is to make certain that this treatment remains available to my mother and those 5 million other people who are going to die on aricept and namenda.
I am begging the drug companies to please do a trial. This drug needs to be offered all over the country, specifically for the treatment of Alzheimer’s. I bring my mother to Dr. Tobinick from Oklahoma. We need doctors here and in every state trained to do Dr. Tobinick’s method.
While some patients are getting some of the care covered by insurance, most are not. Medicare will not cover any of cost. How much cheaper would this be than covering home health care or heaven forbid a nursing home? There are enough patients, who have shown improvement for a significant period of time, for insurance to pay.
For a networ that prides itself on being fair and balanced, this show was neither. It was 3 attack dogs against Dr. Tobinick. I was just there and basically dismissed, by the doctor who said he was happy for me, but that it was really just the nature of the disease ebbing and waning. Of course that is not what her doctors here are saying.
I was only one who could have shared from a family member’s point of view, how the medicine was working and what it had done for my mother and others I know from the clinic. But, it isn’t easy to get that across, when the obvious agenda was attack Dr. Tobinick.
Fair? I don’t think so. Balanced? No way.
Carrie—Thank you so much for your open mind, balanced presentation and continued requests for follow up research.
I knew nothing about the TV program until after it happened and watched the partial clip available on line. After watching it, I e-mailed a request that the remainder of the show be made available and received no response. Reading your and Sherry’s account helps me to understand why.
I’m tired, frustrated and angry that there have been so many biased reports and absolutely no action that proves or disproves the use of Enbrel as a tool in fighting Alzheimer’s. It is totally incomprehensible that researchers are refusing to research something that holds so much promise. There must be something that we can do to speed up the process. Does anyone have any ideas?
I just sent the link to this article to Larry King Live and The Oprah Show asking them to investigate and have a show on this topic which needs to reach the public. I also asked them to make sure they read the comments posted under the article. Feel free to do the same. There must be one or more powerful persons out there looking for this answer that can help. Spread the word.