One of the provisions of the ever controversial Affordable Care Act (otherwise known as Obamacare) is the creation of a website that allows the general public to search a database of pharmaceutical company payments to physicians, called the Open Payments Data website (click here). For those who may be blissfully unaware – and as outrageous as it may seem to those who are aware – it’s common practice in this country for pharmaceutical companies to line the pockets of the physicians who prescribe their products by way of cash payments given out largely as consulting and speaking fees. Mind you, for the most part these payments are perfectly legal, but it does make one wonder just how objective even the most well-meaning physician can be when making decisions that involve choosing between the products of the drug manufacturers whose money they accept versus those of their benefactor's competitors. This ethical quagmire is often described quite politely as a potential “conflict of interest”.
The NMSS helpfully provides lists of the “Scientific Peer Reviewers” who advise the Society on decisions regarding which research projects are worthy of support (click here). Plugging the names of these peer reviewers into the Open Payments Data website reveals what I think is some enlightening information. First, though, please let me illustrate just how much money the pharmaceutical companies that sell MS drugs pay to physicians in efforts to promote their wares. On a drug by drug basis, the following list details the amount of money that made its way from pharmaceutical company coffers into the pockets of MS doctors in the five months spanning August-December 2013. Naturally, the list excludes drugs that have been approved since 2013. I gleaned this info from the Pro Publica website (click here), which provides detailed numbers derived from the database compiled by Open Payments Data:
· Aubagio $3.4M
· Avonex $775.8K
· Betaseron $510.8K
· Copaxone $4M
· Gilenya $682.2K
· Rebif $856.6K
· Tecfidera $2.2M
· Tysabri $1.4M
· TOTAL $13,825,400
Your eyes are not deceiving you, the pharmaceutical companies paid MS doctors who prescribe their drugs $13,825,400 during the last five months of 2013 alone. Again, this is all publicly disclosed data, and such payments are perfectly legal. Call me crazy, but I can think of only one non-expletive that can adequately describe that number: Yikes!
Now, moving on to the NMSS and its peer reviewers; the National Multiple Sclerosis Society utilizes nine standing committees to review research grant proposals for MS research. As previously noted these committees are comprised not only of physicians, but also PhD researchers as well as lay experts in various related fields. It should be noted that the Open Payments Data website contains only information on pharmaceutical payments to licensed physicians, so while the PhD researchers who sit on these committees might occasionally benefit from pharmaceutical company largesse, such payments wouldn’t show up in the database. It should also be emphasized that the physicians on the following list are not evil people; far from it, they are simply professionals legally taking part in an insanely dysfunctional medical system. I'm sure that those who actively treat patients care deeply about those patients. I’ve even had the occasion to meet one or two of these doctors, who I would without hesitation describe as quite brilliant. Still, the pernicious influence of pharmaceutical company money can’t be discounted, even if it works only on a subconscious level.
The two committees I chose to investigate are those that include licensed MDs and which seemed most likely to play a role in making decisions on human stem cell trials. Here then, a list of MD peer reviewers who sit on NMSS advisory committees who accepted pharmaceutical payments from August through December 2013, and the amount of money they received. These totals exclude any funds paid for medical research efforts:
MDs On The NMSS "Research Programs Advisory Committee" Who Received Pharma Money
· Dr. Bruce Cohen, Northwestern University Medical School – $224.87
· Dr. Anne Cross, Washington University – $4311.28
· Dr. Stephen Hauser, UCSF – $4184.86
· Dr. Mary Hughes, Neuroscience Associates – $13.62
· Dr. Aaron Miller, Mount Sinai School of Medicine – $26,855.11
· Dr. Michael Racke, Ohio State University Medical Center – $5733.86
MDs on the NMSS "Clinical and Translational Research Committee" Who Received Pharma Money
· Dr. Laura Balcer, University of Pennsylvania – $2281.36
· Dr. Bruce Cree, UCSF – $74,965.41
· Dr. Philip Dejager, Brigham and Woman's Hospital – $15,294.97
· Dr. Edward Fox, MS Clinic of Central Texas – $76,760.44
· Dr. Omar Khan, Wayne State University – $112,964.52
· Dr. Andrew Pachner, UMDNH-New Jersey Medical School – $29,995.44
Yes, in the mere five months covered by the records of the Open Payments database one of the NMSS research committee physicians received over $112,000 from pharmaceutical companies, two received over $74,000 each, and two more received over $25,000 each. When considering these numbers, ask yourself whether you would trust the recommendations of a film critic who was found to be receiving generous payments from some of the movie studios which produced the films he was reviewing? Would you allow that critic to decide which scripts should be greenlighted and made into movies if you knew that some of those scripts might in some way damage the profit-making abilities of the studios from which he was receiving payments? Me neither.
I’ve often railed that the NMSS should immediately stop accepting funding in any form from the pharmaceutical companies, if only to avoid even the slightest hint that those funds might influence the Society’s actions. I’m confident the goodwill generated by the Society taking such a public stand would far outweigh any financial hit they might incur, and in fact would be priceless. After looking into the pharmaceutical monies received by physicians who serve with the NMSS in research decision-making capacities, I find myself aghast at my discoveries. Even if the doctors involved are nothing but well-intentioned, as I’m sure they are, I would think it impossible that the tens or even hundreds of thousands of dollars they receive from pharmaceutical companies would have no influence on their decision-making process, perhaps even only on a subconscious level. If these payments didn’t result in tangible benefits for the pharmaceutical companies making them, they wouldn’t be made. Large corporations are not in the habit of handing out millions of dollars a year for no good reason. This may be good business, but it makes for bad medicine.
I urge the NMSS to immediately institute a policy forbidding physicians who sit on any of their decision-making committees from accepting pharmaceutical monies for any reason. The confluence of the interests of for-profit corporations with the clinical practice of medicine and medical research cannot be anything but corrosive. These practices will only stop when we as patients and those who love us rise up and demand action. It’s horrendous enough to be stricken with a dreadfully heinous disease intent on robbing those it attacks of their very humanity; to find oneself simultaneously caught in the misguided, tangled mess that is the modern medical industrial complex can crush the soul. It’s time for those of us stricken with MS to make our voices heard, to make a stand and demand that the largest MS advocacy organization in the world take the initially painful but ultimately crucial steps towards living up to their mandate; to not preserve the status quo but instead eradicate once and for all the fetid scourge of multiple sclerosis, a mission I fear impossible when done in concert with corporate entities whose own legal mandate is to turn illness into industry.
The contact number for the National Multiple Sclerosis Society is 800-344-4867. A list of the NMSS senior leadership team, including email links, can be found by (clicking here). I would ask that all opinions expressed or inquiries made be done so in as civil a manner as possible, making pains to avoid personal attacks. The goal is not to antagonize, but to foment change that would benefit both the National Multiple Sclerosis Society and the patients it is meant to serve.
I leave you with the following brilliant piece of video from the HBO TV program Last Week Tonight, featuring John Oliver. This incisive and hilarious segment illustrates better than I ever could just how insane is the current state of Big Pharma/physician relationships. Please, please watch, learn, and enjoy…
WOW! what a video, they (the pharmas) really are the scourge of the medical profession it would seem.ReplyDelete
Yeah, that video really is great. As for the pharmaceutical companies, the reality is that they are only doing what they are allowed to do, for the most part. As a society we have to decide whether it is acceptable to allow pharmaceutical companies to have financial interactions with the doctors who prescribe their drugs. Don't forget, we are the only country that allows advertising for prescription drugs on television and in consumer newspapers and magazines. Keep in mind, tobacco companies are not allowed to advertise cigarettes, which are a direct to consumer item, but pharmaceutical companies can run ads for prescription drugs, which patients (consumers) cannot buy directly. Crazy.Delete
Marc, you a like an American Revolutionary founding father. Nice work, keep it up, and thank you.ReplyDelete
I'm not sure I would go that far, I just like to shine light into dark places… But, you're welcome…Delete
Yes I graduated from an accredited college (2 of them actually), I meant are and I have problems with buttons...ReplyDelete
I guess you should have gotten three degrees. Slacker.Delete
Nice! Snowden-esque? Yea what the heck IS going on here? Thanks for the work Marc, lots of folks right behind and along side you.ReplyDelete
I hope my work doesn't resemble that of Edward Snowden too much, as I have no desire to go live in Moscow. I'm sure it's a nice city and all, but the alphabet is a killer… Thanks for having my back…Delete
Marc you are like our Sam Adams. Perhaps it is the 102" up here that I'm more cantankerous but to me there is a direct link to the faces of MS that are promoted that are seemingly healthy looking climbing as they climb Mt. Everest. I keep referring to The View with Kate Milliken *& Dr. Kreiger. It is wonderful that Kate is doing so well but the inference to MS drugs attributed to her health is very misleading. There are many of us who have tried those same drugs and still ended up in a wheelchair or with a walker or contend with other MS issues that are such a challenge. Oh BTW Dr. Kreiger...$66,862.64 according to the site posted above!ReplyDelete
Karen, there are plenty of us, just like Kate out there who have Relapsing Remitting MS and have benefited from disease modifying therapies. I am one of them! I haven't had an MS attack in over 9 years due to a once a month IV I receive for my RRMS. Yes, the drugs don't work for everyone- specifically for those who have a Progressive form of MS (PPMS, SPMS, PRMS). We know that those with the progressive forms of MS need a DMT asap. Clinical trials are under way for progressive MS treatment options and an International Progressive MS Alliance has been formed to address the needs of people living with Progressive MS. I know that it feels like it won't come soon enough, but help is on the way. Take heart and keep the faith. Better meds and cures do happen, just ask all those who have had Hepatitis C for decades and are now cured!Delete
Karen, I've met Kate Milliken and she's a very nice lady. She has kind of drank the Kool-Aid as far as the NMSS and the disease modifying drugs go, but they have worked for her, as they have for many folks. Satisfied customers don't usually make for troublemaking agitators. May Kate stay symptom-free for a good long time…Delete
Anonymous, I have acknowledged on this blog that many of the MS disease modifying drugs have indeed dramatically increased the quality of life for many folks suffering from RRMS, which is no small accomplishment. My problem with them is that they do nothing at all to cure the disease, and their incredible profitability has greatly inhibited the search for the cure. The overwhelming majority of the current ongoing research continues to focus on the immune system, and an aberrant immune system is not the cause of MS, but rather a symptom of some much greater ill. Until we find the cause of MS, there will be no cure for any form of the disease. That said, I'd be ecstatic if an effective treatment that even just slowed the progression of the progressive forms of the MS were to hit the market tomorrow. Still not satisfied, but thrilled nonetheless…
Anonymous. I immediately started with DMDs....they are great until they don't work anymore. It's at that point when you see things differently. That's when heart & faith are challenged when greed get's in the way of cure.Delete
Thanks for this post, Marc. I wonder if there are similar public disclosures in Canada. It would be good to know.ReplyDelete
Hi Jennifer As a fellow Canadian I question our practices too. I am very disappointed with our MS Society………..its all about fund raising, favouritism, and big salaries. How much on the dollar goes to research? Meredith TAKE CAREDelete
I've not heard of any similar public disclosure of Pharma payments to doctors up in Canada. Whatever problems the Canadian MS society may have, they are at least fully funding a human stem cell trial, which hopefully will bear great results…Delete
Thanks, Marc! Terrific summation, and I hope this gets people riled up enough to make their voices heard. Something I wrote about 3 years ago were the finder's fees paid to universities and MS docs by pharma for placing patients in clinical trials. It's another way doctors game the system, use patients and increase their income. And it's time to stop it. If we are ever to understand MS disease aetiology, the research money needs to stop pouring into status quo treatments, and be directed to scientific discovery.ReplyDelete
Hi Joan, thanks for the kudos. Right back at you, for all you do for the MS community. The issue of clinical trial finders fees is yet another symptom of our incredibly broken medical research model, and I was tempted to talk about it in this essay but it really went beyond the scope of this post's focus. The issue has been getting some attention in the press lately, though. Thanks again…Delete
Marc, This is bigger than just MS patients. I think it's safe to hypothesize that most chronicle ill patients in our country are hung out to dry by the very organizations designed to help and protect. These COI's are too glaring to ignore. Why do I have a dog in this fight you might ask? I'm an adult stem cell patient cut off in the middle of my treatment by the FDA. Here is my story....http://www.cellr4.org/article/390 It was published in "The Official Journal of the Cure Alliance," by Dr. Camillo Ricordi, leading stem cell expert/doc/researcher for diabetic stem cell treatments.ReplyDelete
Jennifer, yes, this is a problem that infects every asset of medicine. By aggressively marketing their products, the pharmaceutical companies have turned us into a nation of pill poppers. But again, they are only doing what they are allowed to do. The situation is really mind-boggling. Very sorry to hear about your stem cell saga. My mom is a type I diabetic, so I'm quite familiar with that awful disease. Here's hoping that stem cells will provide an answer, and research on all nature of stem cell therapies should be given the highest priority by the powers that be…Delete
Marc, this is great investigative journalism, and a levelheaded discussion of how money can corrupt, or can even raise the suspicion of corruption, among otherwise objective physicians. I will be anxious to hear if the NMSS responds to this post.ReplyDelete
Mitch, lucky for me you can do investigative journalism these days by sitting on your ass in front of a computer. I hope the essay is levelheaded, as the problem is more the result of systemic rot than bad people consciously making the decision to screw sick people.Delete
I'm only hoping that the NMSS doesn't respond with a hit squad… Thanks for the kind words…
Thanks Marc. I'd like to see this kind of exposure widespread. As Jennifer mentions, this is bigger than MS. You have done a great job putting this information together. I will be spreading the word.ReplyDelete
Barbara, yes, please do spread the word. The more who are aware the quicker we will reach critical mass. Thanks for contributing to my blog…Delete
Terrific job of getting some great facts!! As I wrote in my essay on why the national MS charities do not act in the best interests of persons with MS (http://www.direct-ms.org/sites/default/files/WhyNMSSNotActingInTheBestInterestsofPersonswithMS.pdf), "It is imperative to appreciate that most (often all) of the scientific advisors of the societies and the societies themselves have strong financial ties to the pharmaceutical companies which manufacture and market the approved drug therapies for MS". People with MS represent a huge heard of cash cows that big pharma, MS neurologists and national MS societies will continue to exploit as long as the cash cows keeping doing what they are told (take the worthless drugs, give your money to MS charities).ReplyDelete
Thanks, Ashton. Although I echo many of your sentiments, I would caution against painting with too broad a brush. As you note, the real problem lies in the fact that illnesses have been turned into industries, and patients are seen as consumers first, sick people second. Basic societal priorities need to change, and unfortunately the changes that are occurring seem to be happening in the wrong direction. The "maker versus taker" ideology leads to a callousness and disregard for the less fortunate that is counterproductive, to say the least.Delete
I also would hesitate to label all MS drugs as worthless, as many patients have benefited from taking them, even if the "only" benefit is a dramatic increase in quality of life. Some of the newer drugs do show signs of perhaps being able to slow disease progression, but that remains to be definitively proven one way or the other. The real problem with all of these drugs is that the immense amounts of money they generate has turned the focus of MS research away from looking for the cause of the disease, and instead placed it on finding newer and more patentable ways of suppressing the immune system. Also, since most drug trials only last two or three years, nobody is really quite sure what the long-term effects of widespread immune system suppression will be. Let's just hope that there are no nasty surprises waiting in the future…
I would not be surprised if the incestuous relationship between Big Pharma and NMS is the reason why little attention has been paid to progressive MS. I am sure the r/r crowd appreciate the 11 drugs that help a lot of people, but as a person with progressive MS, I find its just cruel. That said, my only hope lies with the International MS Federation, funded by MS Societies around the world and is dedicated to progressive MS only. I dare not hope for stem cells because they mostly only work on younger people.ReplyDelete
You may absolutely hope for stem cells Anonymous! That's the good news I want to share with you today! Gordie Howe hockey legend and stroke sufferer was just helped tremendously by stem cells! His family is overjoyed! http://detroit.cbslocal.com/2015/02/23/gordie-howes-son-says-dads-recovery-no-fluke-excited-for-future-of-stem-cell-treatment/ Also Mel Gibsons 92 year old father "had one foot in the grave" and has seen many quality of life improvements. Even PPMS patients are seeing improvement. Not all, but many! I can tell you story after story of older patients getting quality of life improvements! Many older parkinson's and arthritis patients who've been treated are seeing amazing improvements. At the very least, we can hope for a halt in disease progression! We have a group on FB called Patients For Stem Cells, also a Twitter feed @PFSCToday and our web site Patientsforstemcells.org We share the latest info on stem cell news. We educate the public, patients, and the media on the FDA's overreaching policy of declaring my stem cells and yours a drug. We are all adult stem cell patients who use our own stories and experiences to help others find hope. I want to encourage you today to know there is HOPE for all in being treated with your own stem cells for disease/conditions. Another great web site and someone who's been at this a lot longer than I have is Barbara Hansen of Stem Cell Pioneers. http://www.stemcellpioneers.com Check it out!Delete
Anonymous, IMO the biggest reason so little attention has thus far been paid to progressive MS is there are far fewer of us, and designing trials that track progression is extremely difficult and not cost-effective. The Progressive MS Alliance is a step in the right direction, but I hope that much of the research funded goes towards finding the root cause of the disease, and not only looking for ways to slow the disease down.Delete
Jennifer, I applaud your enthusiasm, but I would caution just a bit against placing too much stock in strictly anecdotal evidence, especially anecdotal evidence presented on the web, as, for the most part, patients who don't see improvement generally don't post testimonials. Therefore, the picture presented is quite the lopsided one.. Of course, because of the difficulty of getting stem cell trials started, anecdotal evidence is pretty much all we have to go on these days. There are numerous treatments that seemed extremely promising based on early anecdotal evidence only to prove worthless when strict clinical trials were performed. Most regenerative stem cell treatments for MS are in reality not a one-time deal, as they don't permanently shut down the disease process. Therefore, patients paying tens of thousands of dollars for such treatments need to be made aware that the benefits they see will likely only be temporary. This is what makes the trial being done at the Tisch Center so promising; patients are being given repeated treatments over a relatively long period of time, and the cells used are neural progenitors, stem cells specific to the central nervous system.
Stem cells alone will not work, no chemo = no cure. The stem cells alone will not do the job which is why it would need to be repeated several times. Look at it this way. You have a puppy (your immune system) that is out of control and eating away at your electrical wires (your nerves). The puppy chews up the wires and you throw a band aid on it (the stem cells) it may fix the problem for a little bit, but until you get that puppy under control, you are going to have to continue putting band aids on the wires. The chemo kills that puppy and the fixes the problem, if that puppy has not done too much damage than your nerves can heal themselves and repair is done. Dr. Burt in Chicago will not do it for PPMS, but Russia will. Dr. Federenko is doing an amazing job. Dr. Burt will only do it for RRMS and for some who are changing over to SPMS.Delete
Warrior, HSCT and regenerative stem cell therapy are two completely different beasts, intended to tackle two completely different aspects of the disease. Yes, regenerative stem cell therapy will likely need to be repeated, but the cells are meant to directly address and repair the damage done to the central nervous system by the MS disease process. The cells also have anti-inflammatory properties, which help dampen the effects of the disease. Definitely not a cure, but I don't believe that HSCT is a cure either. I'm a big proponent of HSCT, and to think that this treatment modality will completely transform the MS treatment landscape for many, many patients. The therapy certainly puts most patients with active inflammatory disease into remission for years at a time, but long-term studies show that the disease reactivates in the majority of patients during years 11-15. In patients without active inflammatory disease (progressive patients without enhancing lesions) the effectiveness of the treatment is much diminished and is of questionable value, which is why it's not offered by most treatment centers. Yes, you do read anecdotal evidence on the web about progressive patients who seem to have benefited. However, tracking progression is notoriously difficult, and most of these patients have only been treated within the last year or two. I personally know several progressive patients whose disease was not stopped by HSCT, and a couple who did see relief for a number of years only to see the disease reactivate. For them, the treatment did have value, but to claim that HSCT is a cure is a stretch at best. Again, I am very "pro-HSCT", but the very mechanism of the treatment suggests that its efficacy would be severely hampered in patients without active inflammatory disease activity. I'm planning an upcoming blog post to update my previous post on HSCT, given all of the recent studies that have been released. Here's a link to my previous HSCT post: HSCT PostDelete
This is exactly what I had suspected of the NMSS. Good sleuthing and, as usual, your writing skills make it all very, very clear.ReplyDelete
Thank you, Daphne. I'm actually sorry that I was able to confirm your suspicions, we'd all be much happier if those suspicions had turned out to be wrong. Thanks for your steady contributions to Wheelchair Kamikaze…Delete
Great post! Is any MS organization NOT taking $$ from Big Pharma? A friend wants to donate toward research and I don't know where to send her. Thanks for any help!ReplyDelete
Hi Melinda, there are quite a few MS organizations worthy of donations. My three favorites are The Myelin Repair Foundation, The Accelerated Cure Project, and the Tisch Multiple Sclerosis Research Center of New York, the organization that is carrying out the stem cell trial that spurred this post. These three organizations are extremely deserving of donations from people who want to see this disease cured as fast as possible. Not saying there aren't other organizations out there, just listing my personal faves…Delete
Had someone told you fifteen years ago that you would be a revered leader for a medical cause, you might have scoffed. But, leader you have become. So many of us have probably wondered at some point about a potentially insidious relationship between pharma and not just the MS Society, but also the medical field in general. You, though, took it a step further. You did research which substantiated your concerns. Again, things could have stopped there. However, your impressive writing skills have not only gained you a wide readership, but they also have garnered you a high level of respect; so high, those readers are willing to lobby quickly and effectively at your suggestion. Congratulations, Marc. Your leadership abilities would be impressive under any circumstances. Because they occur in the context of severe physical hardship, those abilities must be deemed extraordinary. Of course, your interest in improving the state of research and delivery begins from trying to ameliorate your own situation. The consequence for so many, though, is far reaching and deeply significant. Many, many thanks, Marc.ReplyDelete
Judy, had someone told me 15 years ago that I would be a revered leader for medical cause, I would have told them that they really needed to stop eating enchiladas right before bedtime. I thank you for your very gracious words, and only hope I can even begin to live up to them. Life certainly does deliver its share of surprises, doesn't it? And, yes, I am indeed trying desperately to save my own ass, and I fervently hope to achieve that desire, but as with many things in life, the journey is turning out to have precious value all by itself. Given the rigors of this illness, it is sometimes very difficult to recognize this, but it's instances like reading your comment that bring things into sharp focus. So, I thank you…Delete
That is a great (sad) peace of writing. It is always a pity to read about situations where people thought to protect a group of people sell their interests instead.ReplyDelete
I was writing this week about the costs of pharmaceutical drugs. The Wall Street Journal put out a peace about how many expensive conditions like MS now only have treatments offered on a different and more expensive pay scale. I think if the current trends hold and more patients/pharmaceutical companies follow the logical route, the costs will only sore higher. Pharmaceutical companies have programs where they pay the copay for patients. What stops them from jacking up the prices to simply cover the costs of paying the copays? I think of my Tysabri and how fantastically expensive it is and how little I pay (lucky!). Want to bet other pharmaceuticals aren't following this model with more to come?
The sad truth is that as obscenely expensive as MS drugs are, there are drugs out there for even rarer diseases whose prices would make your eyes fall out. Seems like the pharmaceutical industry is somehow exempt from the notion of competition and the invisible hand of the marketplace. Ever notice how almost all of the MS drugs are priced within a few thousand dollars of each other? If you feel like doing some interesting reading, Google Gilead pharmaceuticals and their drug Solvadi, a compound that actually cures hepatitis C. It was approved last year at the whopping price of $1000 per pill, or about $80,000 for a 12 week course of medicine that cures patients of a terrible chronic illness within effectiveness eclipsing 90%. It's the first cure I've read about in decades. Since there are so many hepatitis C patients in the United States and around the world (tens of millions), all of whom desperately want the drug, the price charged threatens to bankrupt healthcare systems, including Medicaid. Insurance companies have finally fought back, and then a competitive drug entered the market. A price war of sorts has ensued, the first I've ever seen involving prescription pharmaceuticals still under patent. Very interesting stuff. The stock of the companies involved has been punished, and while on a visceral level that may feel good, I fear it will inhibit other companies that might be working on cures rather than treatments. Even at its hefty price tag, Gilead's drug would wind up saving insurance companies millions, as patients cured of hepatitis C now will not be requiring liver transplants in the future. Sets up an interesting moral dynamic, and one in which I think I may come down on the side of the pharmaceutical companies.Delete
When I was first asked to apply for a position as a patient advocate, I was asked what I would change about our healthcare system if I was given absolute control over it. I wrote back that I would try to move the conversation back from "can we" to "should we?" As medical technology advances, more and more becomes "possible" but only at great costs. I gave personal examples of patients who should have been given the option to remove limbs rather than years of rehab for a mangled leg that will never function as well as a prosthetic at half the cost and a tenth the recovery time. They could save the leg, and that is what they told the patient, a 21 year old young lady.Delete
When I look at these pharmaceutical advances, I find myself asking "what price is too high?" Would you bankrupt healthcare and possibly governments around the world to bid on and buy a drug to cure Hep C? What about MS just to make it more personal for many of us here? What about cancer? Would you give up efforts to generate potable water around the world to cure cancer, a reasonable trade if one is making decisions solely on number of lives saved? How does one make these choices, and why do we so rarely acknowledge the trade offs? Like most patients, I want a cure, but I'd like to think I would forgo a cure to my MS if taking it would mean others go without life's basic needs.
This is the Dr. Kreiger I am referring to.
Thanks for the link, Karen.Delete
I feel like this conversation should be taken to a wider audience at this point. I am a family member to a woman who had HSCT done with Dr. Burt at Northwestern. It was a phenomenal experience. As a scientist, I read all the journal articles beforehand and was impressed by the data/numbers. It looked better to me than the current DMDs we were considering for relapse stabilization. I have been disheartened by the lack of coverage of HSCT through the NMSS. I feel it should get more hopeful updates. Clinical trials need to recruit to show that they work or don't work. And, sometimes cutting edge research is the best option for a patient. For these reasons, I think the NMSS should give more air time to procedures like HSCT. I now try to get the word out through patient groups....not all MS publications are even interested in our family's story. Now with the points you have brought up, I feel like there should be some investigative reporting into how decisions are made at the top levels whether it be for research funding (money raised in part from all those Walks the patient community volunteers for) or for giving equal coverage to research updates and therapies. How can we escalate this discussion? Any ideas? I would love to help. It seems timely with it being MS Awareness month.ReplyDelete
Cordelia, I'm a big proponent of HSCT, and wrote an article about it last year. You can read the article by clicking here. I plan on doing an update to that post in a few weeks, as there has been much data released since then.Delete
Please see my reply to Karen's comment below for my thoughts on spreading the word, and possibly combating, the influence of Big Pharma on not only the NMSS but the practice of medicine in general. I think it's important to not vilify these companies, as for the most part they are working within the letter of the law. It's very important that new laws be made that address the current problems.
Cordelia Vahadji I agree. We do need to escalate this discussion. Perhaps we can organize a coalition by state? We can start with a questionnaire by state to compile are target list to urge this investigative reporting? Those who had HSCT as well as those who didn't.ReplyDelete
If you are in HSCT FB groups, we might be in the same circles already. I use the name Cordelia Corbett on FB. My first thoughts were to use social media...maybe an online petition through Avaaz or the like to ask for some transparency on the issues I outlined above. Maybe that could lead to media coverage. Not sure. Just brainstorming. I like your idea too, but I wonder if it might involve too much coordination. And getting people to show up in person and get organized can be challenging from my experience. Signing an online petition might open people up to the cause with little effort.
Karen and Cordelia, thought you might be interested to know that I recently purchased the domain names endpharmainfluence.com,.net, and .org. Haven't yet decided what to do with them, but I was thinking of starting a grassroots organization called End Pharma Influence Completely, or EPIC. I envision a day when doctors who forswear taking Pharma monies can proudly be certified by the group, and hang "My Doctor Is EPIC" signs in their offices… Unfortunately, due to the realities of my disease, I haven't put in the requisite sweat equity to get things going. Someday soon, though…Delete
.As usual, great research.if media outlets took half the time u do journalism would be in a much better place.ReplyDelete
Although on the surface the numbers look shocking, considering the lack of progress on the root causes of the disease personified in PPMS they are not surprising.
Btw it's very similar in Canada, Google alerts/ surveys all filled with info or questions on latest drugs.
Only thing that helps is physiotherapy or excercise.
This comment has been removed by the author.ReplyDelete
You're a total legend, dude... I shouldn't want to read such scandalous news but you're great at shining a light on things and I appreciate reading it. Your voice echoes immensely.ReplyDelete
I did notice a $25,000+ gift from Genzyme/Sanofi (the manufacturer of Lemtrada) in the last IMSMP newsletter. Obviously that is chump change, however.ReplyDelete
I love this post. Last year, I was receiving pushback from my neurologist about switching medications. He was not listening to anything I had to say. I did some digging and found he was making $75000 a year from the company that manufactured the drug. I found a new doctor and I'm much happier. In other countries, this is not allowed. Advertising for prescriptions isn't allowed. I think the US has a lot to learn.ReplyDelete
And that's only the U.S. In every country this plays a role. The local national MS societies are funded by big pharma, because the international market is 2.4 million potential customers ergo ms patients world wide. This is a huge playing field. In the Netherlands the ms population is 0,01% of all dutch inhabitants. This equals 17 to 20.000 ms patients. In the Netherlands alone there are like 10 to 20 different MS foundations and organisations all with different policies, funding different research projects and trying to raise awareness one way or the other. Everyone is trying to aim for the same goal for a ms free world, but with mixed and different interests. If this is the case in the Netherlands, it's probably the same in every country. What I think we need is one united international voice world wide, independent funded with no connections to big pharma and investing in research regarding the cause of MS and neuro regeneration therapies for patients who a in the neuro degenerative state and reverse disability.ReplyDelete
The only powers who can work international currently are big pharma. Divide and conquer is probably their strategy. If we could accumulate and combine all donations internationally we might have a chance to end this disease. We need to unite, combine influence, funds, research strategy etc etc. Direct those funds to research that really matters. One voice, one goal, one future, one ms free world.