Comments for AlexO'Meara.com http://www.alexomeara.com Author of Chasing Medical Miracles: The Promise and Perils of Clinical Trials Mon, 25 Jan 2010 13:33:05 +0000 http://wordpress.org/?v=2.9.2 hourly 1 Comment on “Extraordinary Measures” movie offers window into image issues about clinical trials by Scott S http://www.alexomeara.com/2010/01/extraordinary-measures-movie-offers-window-into-emotional-side-of-clinical-trials/comment-page-1/#comment-17 Scott S Mon, 25 Jan 2010 13:33:05 +0000 http://www.alexomeara.com/?p=346#comment-17 I find the reviews somewhat curious in that they depict it as a father who is going to extraordinary measures to find a "CURE" (in the words of the reviewers) for his childrens' rare disease, in this case, Pompe disease. Instead, what was actually accomplished was not, in fact, a cure, but a transformation of the disease from a once-fatal condition to a permanently chronic ailment which will require ongoing treatment for as long as the child lives. That's a very similar situation to what occurred with patients with type 1 diabetes shortly after the discovery of insulin in 1921. But the disease transformation, in the words of author Chris Feudtner ("Bittersweet: Diabetes, Insulin, and the Transformation of Illness", 2003) the term "Bittersweet" describes medicine not so much as a history of consistent and steady progress as it is often viewed, but rather, a compromise between the lesser of two lousy choices. In many cases, treatment falls short of the ultimate goal of actually making people better and restoring them to permanent health. This is true for not only diabetes, but for many other conditions, ranging from asthma to AIDS. In the process of disease transformation, I hope that Mr. Crowley learns a few things about chronic ailments in the process; namely that treatments are not the same thing as cures, and often come with adverse events of their own. His children are not cured; rather they will continue to need this drug (currently made only by Genzyme, hardly what one could call a robust competitive market), and the lack of competition means those individuals will be victim to the pricing whims of a for-profit company for eternity (ironic, considering insulin has been around since 1921, just a handful of global companies make the stuff even today). Welcome to the world of chronic disease, Mr. Crowley ... it's better than death, but its still not a cure .... I find the reviews somewhat curious in that they depict it as a father who is going to extraordinary measures to find a “CURE” (in the words of the reviewers) for his childrens’ rare disease, in this case, Pompe disease. Instead, what was actually accomplished was not, in fact, a cure, but a transformation of the disease from a once-fatal condition to a permanently chronic ailment which will require ongoing treatment for as long as the child lives. That’s a very similar situation to what occurred with patients with type 1 diabetes shortly after the discovery of insulin in 1921. But the disease transformation, in the words of author Chris Feudtner (“Bittersweet: Diabetes, Insulin, and the Transformation of Illness”, 2003) the term “Bittersweet” describes medicine not so much as a history of consistent and steady progress as it is often viewed, but rather, a compromise between the lesser of two lousy choices. In many cases, treatment falls short of the ultimate goal of actually making people better and restoring them to permanent health. This is true for not only diabetes, but for many other conditions, ranging from asthma to AIDS. In the process of disease transformation, I hope that Mr. Crowley learns a few things about chronic ailments in the process; namely that treatments are not the same thing as cures, and often come with adverse events of their own. His children are not cured; rather they will continue to need this drug (currently made only by Genzyme, hardly what one could call a robust competitive market), and the lack of competition means those individuals will be victim to the pricing whims of a for-profit company for eternity (ironic, considering insulin has been around since 1921, just a handful of global companies make the stuff even today). Welcome to the world of chronic disease, Mr. Crowley … it’s better than death, but its still not a cure ….

]]> Comment on IDs and Tighter Trials Registration for Subjects in India by Scott Strumello http://www.alexomeara.com/2009/12/ids-and-tighter-trials-registration-for-subjects-in-india/comment-page-1/#comment-14 Scott Strumello Tue, 08 Dec 2009 14:03:29 +0000 http://www.alexomeara.com/?p=336#comment-14 Interesting stuff!! Interesting stuff!!

]]> Comment on Do subjects want to know about conflicts of interest? Not necessarily by Scott S http://www.alexomeara.com/2009/08/do-subjects-want-to-know-about-conflicts-of-interest-not-necessarily/comment-page-1/#comment-13 Scott S Sun, 20 Sep 2009 23:44:05 +0000 http://www.alexomeara.com/?p=308#comment-13 The fact is that many participants in clinical trials wouldn't even suspect the study sponsors to have conflicts-of-interest, and that is the problem. The medical profession has a very sloppy track record when it comes to conflicts-of-interest and the consequences for having these have been almost non-existent. With that being the case, its little wonder that a) participants don't think much about them and b) that the profession has little incentive to change their ways. I'm afraid it will take regulatory action to clean this mess up. Let's hope Congress doesn't cave into lobbyists on this issue, too! The fact is that many participants in clinical trials wouldn’t even suspect the study sponsors to have conflicts-of-interest, and that is the problem. The medical profession has a very sloppy track record when it comes to conflicts-of-interest and the consequences for having these have been almost non-existent. With that being the case, its little wonder that a) participants don’t think much about them and b) that the profession has little incentive to change their ways. I’m afraid it will take regulatory action to clean this mess up. Let’s hope Congress doesn’t cave into lobbyists on this issue, too!

]]> Comment on Medical Journal Ghostwriting Crackdown … Maybe by Scott http://www.alexomeara.com/2009/09/medical-journal-ghostwriting-crackdown-maybe/comment-page-1/#comment-12 Scott Fri, 18 Sep 2009 19:11:49 +0000 http://www.alexomeara.com/?p=324#comment-12 As of now, a majority of medical journals are no longer published by not-for-profit medical societies anymore, but by for-profit global publishers, the biggest of which are Elsevier, Wiley/Blackwell, and Wolters Kluwer. Once the interests are sold to companies who have no vested interest in medicine, but for-profit publishers, editorial content suffers as a result. There is tremendous pressure in academia to be "published", thus there is pressure to comply with ghostwriting, especially when there is little harm involved to one's personal career as a result, thus there are only too willing participants in ghostwriting meant to advance themselves as a result. A good place to begin would probably be ensuring medical doctors be required to take an ethics course prior to doing their residencies. But I doubt that is likely to ever happen. As of now, a majority of medical journals are no longer published by not-for-profit medical societies anymore, but by for-profit global publishers, the biggest of which are Elsevier, Wiley/Blackwell, and Wolters Kluwer. Once the interests are sold to companies who have no vested interest in medicine, but for-profit publishers, editorial content suffers as a result.

There is tremendous pressure in academia to be “published”, thus there is pressure to comply with ghostwriting, especially when there is little harm involved to one’s personal career as a result, thus there are only too willing participants in ghostwriting meant to advance themselves as a result. A good place to begin would probably be ensuring medical doctors be required to take an ethics course prior to doing their residencies. But I doubt that is likely to ever happen.

]]> Comment on Clinical Trials News Update – May 22, 2009 by alex http://www.alexomeara.com/2009/05/clinical-trials-news-update-may-22-2009/comment-page-1/#comment-10 alex Sat, 23 May 2009 16:55:54 +0000 http://www.alexomeara.com/?p=167#comment-10 Thank you for pointing out that medications for Alzheimer's treat symptoms at this point. That's an important distinction and a good rationale to explore trials as a way to finally address the causes and possible cures. Thank you for pointing out that medications for Alzheimer’s treat symptoms at this point. That’s an important distinction and a good rationale to explore trials as a way to finally address the causes and possible cures.

]]> Comment on Clinical Trials News Update – May 22, 2009 by Tracy@ICARAstudy http://www.alexomeara.com/2009/05/clinical-trials-news-update-may-22-2009/comment-page-1/#comment-9 Tracy@ICARAstudy Sat, 23 May 2009 07:33:08 +0000 http://www.alexomeara.com/?p=167#comment-9 It is important for patients and families affected by diseases such as Alzheimer’s to consider participating in clinical studies. Another study to consider is the ICARA (Bapi) Study (www.icarastudy.com), whose goal is to explore if an investigational drug, called Bapineuzumab, can help slow the progression of Alzheimer’s Disease. Clinical studies that test new treatments are the best chance we have for fighting this disease. Current therapies for Alzheimer’s treat the symptoms associated with it, not the disease itself. It is important for patients and families affected by diseases such as Alzheimer’s to consider participating in clinical studies. Another study to consider is the ICARA (Bapi) Study (www.icarastudy.com), whose goal is to explore if an investigational drug, called Bapineuzumab, can help slow the progression of Alzheimer’s Disease. Clinical studies that test new treatments are the best chance we have for fighting this disease. Current therapies for Alzheimer’s treat the symptoms associated with it, not the disease itself.

]]> Comment on Clinical Trials News Update – May 12, 2009 by IceCold http://www.alexomeara.com/2009/05/clinical-trials-news-update-may-12-2009/comment-page-1/#comment-8 IceCold Wed, 13 May 2009 17:19:54 +0000 http://www.alexomeara.com/?p=149#comment-8 Oh! And yeah, thanks for having the updates here! Thanks! Oh! And yeah, thanks for having the updates here! Thanks!

]]> Comment on Clinical Trials News Update – May 12, 2009 by IceCold http://www.alexomeara.com/2009/05/clinical-trials-news-update-may-12-2009/comment-page-1/#comment-7 IceCold Wed, 13 May 2009 17:19:25 +0000 http://www.alexomeara.com/?p=149#comment-7 Some of these articles confuse me. The one about anti-depressants and hype describes a really confusing research study. I like that you've got things on here that simply make sense. I think people try too hard sometimes to make their stuff confusing so they'll sound smart. Some of these articles confuse me. The one about anti-depressants and hype describes a really confusing research study. I like that you’ve got things on here that simply make sense. I think people try too hard sometimes to make their stuff confusing so they’ll sound smart.

]]> Comment on Toto, I don’t think we’re just in North Carolina anymore by Rachel687 http://www.alexomeara.com/2008/11/toto-i-don%e2%80%99t-think-we%e2%80%99re-just-in-north-carolina-anymore/comment-page-1/#comment-6 Rachel687 Wed, 13 May 2009 17:14:12 +0000 http://www.alexomeara.com/?p=8#comment-6 Believe me, North Carolina is still a hotbed of clinical trials! The radio stations broadcast ads for them all the time. I just heard one yesterday about "Do you think you're drinking too much?" and it is about a UNC study and an experimental treatment. It's weird to be here where we've got great hospitals, but also you have to wonder how much of what they're doing is experimental. Anyway, hang on tight Kansas City! Believe me, North Carolina is still a hotbed of clinical trials! The radio stations broadcast ads for them all the time. I just heard one yesterday about “Do you think you’re drinking too much?” and it is about a UNC study and an experimental treatment. It’s weird to be here where we’ve got great hospitals, but also you have to wonder how much of what they’re doing is experimental. Anyway, hang on tight Kansas City!

]]> Comment on Clinical Trials News Update – May 12, 2009 by Loki http://www.alexomeara.com/2009/05/clinical-trials-news-update-may-12-2009/comment-page-1/#comment-5 Loki Tue, 12 May 2009 17:03:29 +0000 http://www.alexomeara.com/?p=149#comment-5 I appreciate posting news updates on your site. There seems to be a lot of info out there that's tough to get through and this helps alot. I appreciate posting news updates on your site. There seems to be a lot of info out there that’s tough to get through and this helps alot.

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