More on Etanercept Research, and Why Optimism and Critical Thinking are Compatible
Thursday January 17, 2008
My previous blog about a new study focusing on etanercept as a treatment for Alzheimer's has generated a lot of discussion. This is great, because all research should be evaluated for its merit and prospect for real solutions.
I was recently informed of another blog about this research that raised concerns about the validity and actual potential of the results. It implies that we shouldn't be too optimistic about etanercept because:
- the report was a case study of one person,
- the journal that published the study is not very well known or prestigious, and
- one of the researchers has ties to the company that makes the drug.
These are all legitimate concerns, so I did some more digging. Here's what I found out:
- Even though the study involved just one person, it was an attempt to clarify the results of a pilot study in 2006 in which the majority of 15 patients experienced the same results. The researchers chose to perform a case study this time around in order to better explain the mechanisms they had already witnessed.
- The Journal of Neuroinflammation is not very well known because it is new -- but new does not necessarily translate to low quality. The journal has an international review board of almost 50 editors in the field. It's also committed to publishing peer-reviewed (that means evaluated by experts) biomedical research that is open access. That means it's freely and universally accessible online to all of us. In fact, you can read the actual research report about etanercept right now if you want all of the details.
- It's true that one of the researchers owns stock in the company that makes etanercept and has a number of patents in the pipeline involving the drug. Corporate connections are always a concern. In this case, his connections certainly may have influenced his choice to study the use of etanercept to treat Alzheimer's. Did his connections influence the results? Not likely, considering that he was not the sole investigator and that the study was peer-reviewed.
I'm all for skepticism when it comes to remarkable claims. The last thing I'd want to see is the perpetuation of false hopes. Obviously, this study will need to be replicated and shown to produce the same results in many, many more individuals. But I think optimism is justified, as long as it's combined with patience and realism. What do you think? Are optimism and cricital thinking compatible?
Comments
Carrie,
Thanks for doing such great work behind the scenes to make sure we were looking at this great news so thoroughly. The study is most definitely hopeful, despite the fact that this case study followed only one patient.
Trisha Torrey
About.com Guide to Patient Empowerment
http://patients.about.com
When I clicked on your link for the original article, I got a PDF with one figure and a title, but no article. COuld you try that again? Thanks! -Sybil
Carrie,
Thank you for your insight into this study. Other articles have come to press about the wonders of a drug study only to find that it was not quite as good as it seemed. Your article offers great optimism mixed with the necessary realism. This will be one to watch.
In a relentness disease such ALZ, every effort must be done to take our loved one’s lost memories back even with experimental treatments. If this approach is really useful or at least hopeful, it must be tried in other patients with ALZ; because we have no other treatments with such acute therapeutic effect(s). The only handicap of this approach is the difficulty to administer the TNF-alpha blocker; and we also need to know how to adjust the dosage individually. I believe the answers of these questions will be found by additional research
My husband has alzheimers is 67yrs. I would be happy for me to be in your research program. Is this at all possible?.
Hi Carrie,
Thanks so much for doing the research on this and explaining each point the way you did. And for putting these medical and research terms into plain English for us. I too, like the other person making comments, would like to know if it is possible to get my sister who is 56 into the study. At this point what could it hurt to try these things. Seems to me we have nothing to lose and perhaps something to gain. I bet many families would line up for this “chance”………..Anyway, please let us know of any updates with this. And thanks for your work you do!
Carrie,
Your comments on this ammzing study are right on. My 80 year old father has been struggling with ALZ for 4 years now. My father has been to several physicians. Basically, they have told us that there is nothing that they can do, which leads us back to where we started from. This is a very crippling disease and the effects are devasting on both the patient and the family members. When I first read about this,I was totally amazed as well as skeptical. I read your comments and also viewed the website of the Journal of Neuroinflammation, where I read the detailed account of the study. It was absolutely incredible. This is definetely a breakthrough discovery and could very well be the answer to many prayers and much hard work and studies, prior to this one. I think that everyone who is an ALZ patient and/or friends and family members of an ALZ patient need to come together to ensure that this prompt and thorough attention, and that the FDA, CDC, JAMA, and any and all other essentional persons will get onboard, get any and all the info out there and get these studies set up. Time is of the essence. It is critical and imperitive that we stanad together and see to it that this gets off the ground and quick. In this life, you need to take chances for the ones you love and care about. If there is anything I can do to help, please feel free to email me at Tranquil12@aol.com
Sincerely,
Carrie Lynn Jackson
The study I read was carried out by the Los Angeles Medical School.There were 47 patients.The improvement memory score was 4.2 which I am told is enourmous.I think you should remove references to one patient or at least update your page to related to present knowledge!!!
What is there to lose by trying etanercept in a larger trial of ALZ patients? The main safety concerns with this drug are long-term. It’s short-term safety is very well established. I fought hard to get this drug for my husband who has rheumatoid arthritis. For that disease it has been nothing short of a miracle for him and thousands of other sufferers. The issue really boils down to money. This is an incredibly expensive drug. I would love to hear your thoughts on a) a large-scale trial of etanercept for ALZ patients, and b) how a national program might be funded should the drug’s promise be borne out. Thanks Carrie!
Dr. Hill;
Thank you for your updates. I have been following AlzheimersWeekly Forum with a caregiver who just started his Mom with Dr. Tobinick’s Enbrel therapy, and the Alzheimer’s Association Forum with a caregiver’s Dad starting with the same therapy. Both took them to LA for treatment.
We are very interested in the results, as my wife Linda has EOAD and is severely affected at 51, with speech all but gone, but physically trim and healthy. We want to try this too, as we have little to lose at this late stage.
The INR website as well as several articles reference Dr. Tobinick teaching others to use his patented techniques. I have no information about any others performing this technique. We live in the Northeast between Boston and Providence with excellent medical facilities in our region. It would be much less disruptive for Linda to have treatment available in the region. To go to Dr. Tobinick’s INR clinic for treatment involves moving to LA for many weeks of treatment, a costly and confusing situation for an Alzheimer’s patient.
Please publish a list of other doctors who have been trained in the procedure.
Thank you;
Bob Lee