Tuesday, 4 February 2014

In Bed with Pharma

We have been chastised for being in bed with Pharma.

Prof. Ian MacDonald a leading MSologist (and mentor of ProfG) once said.."You are in bed with all of them or none of them"

So as we stand in our Ivory towers of Altruism we ask

What treatments have been approved for MS in the modern Era that do not involve the Pharmaceutical Industry?

Outside of MS what are they?

Answers greatly appreciated

22 comments:

  1. The liberation therapy[?]

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    1. :-)!!! I knew this was coming.
      Not approved, nor likely to be.

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    2. Technically Pharma is involved with any angioplasty procedure. Heparin and possibly fentanyl during the procedure. An anticoagulant for weeks afterward. Baby aspirin ongoing after that.

      Angioplasty is already approved as a treatment for blood vessel stenosis. It does not need to be re-approved.

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  2. Transplants, but then we need anti-rejection drugs.

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    1. I was thinking of any repurposed drug?
      we see loads of investigator trials eg phase ii but where do they evef lead. If you have not thought out the pathway to people properly and it is achievable, should you start in the first place.
      you can argue it is working out trial design for pharma but to think that there will be general take up after a trial without all the regulatory approvals is probably naivebutvthis view hails from a lot of bright people living in dream worlds

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  3. You said

    It's not so much that drugs have to be developed by companies that are interested in making a profit.

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    1. You said what about the rest of the post... if you want to write garbage don't expect it to be posted

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  4. Which companies are not interested in making a profit?......Closed companies!

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  5. Here's an example of a hi-tech industry where there is a good separation of duties - the defence industry. The military decide what weapons the forces need and then companies undertake research and produce the equipment e.g. Nuclear weapons or fighter aircraft. It's cutting edge technology. The inustry make profit for their shareholders and the miltary get the equipment they need. The research bods work for either the MoD or industry. One thing that doesn't happen is the military don't take money from industry - rules to prevent this. I'd prefer this approach for the MS drugs industry ie doctors just treat patients, research scientists work for academia or a company. There should be a clear divide. If doctors take money from the industry that produces the drugs they prescribe there a definite conflict of interest.

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    1. Re: "hi-tech industry where there is a good separation of duties.."

      Very difficult in Pharma; Pharma needs access to patients to test their compounds these need to be done with clinicians. There are some interesting models in development in which trials are being done without clinical contact. However, these are very special cases and definitely not for products with potential safety concerns.

      I think we need to get away from the "them and us" attitude. We are partners and are all striving to achieve the same goal; better outcomes for people with MS.

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  6. Yes, all of the approved TREATMENTS for MS have come from Big Pharma. Unfortunately, we have seen nothing that even approaches a cure. This can only be expected when the vast majority of MS research is funded by the pharmaceutical companies, almost all of which are public entities, beholden by law to their shareholders and not to the patients (or, to use the correct nomenclature, customers) who take their products.

    With the treatment of MS morphing into a multibillion-dollar international industry over the last decade and a half, pharmaceutical company executives would actually be violating their legal mandate by coming up with a cure and thus killing the goose that lays perpetual golden eggs.

    Not to imply that this is the work of evil malcontents, feasting at the table of heinous illness. Rather, the corrupting and corroding influence of huge money has completely warped the medical research model. Well-meaning researchers are naturally drawn to studies that will get funded, as they need to feed their families and pay the rent. Well-meaning pharmaceutical company execs, always trying to increase their company's bottom line, funnel funding towards research that holds the potential for blockbuster profits, which in the MS arena have been found by creating drugs that modulate or suppress a supposedly aberrant immune system, which is actually a symptom of a much greater, and as yet undiscovered, ill.

    If a fraction of the money spent developing the current crop of disease modifying drugs, along with a fraction of the capital being thrown at similar drugs in the pipeline, had instead been spent on a concerted effort to isolate the root cause or causes of the disease, we might very well be on the cusp of a cure.

    The current medical research model is quite simply broken. Capitalism is an incredible tool for creating wealth, the best of humankind has yet come up with, but it's marriage to medicine has is an unholy one. The problem lies not in the individuals manning the system, but in the system itself.

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    1. Re: "The current medical research model is quite simply broken."

      I agree; our major problem in MS is the repurposing of off-patent drugs. This is why we are working quietly behind the scenes on the Big Pharma Alternative.

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    2. You can not blame pharma for the failure of alemtuzumab in the us. If treated early enough could that be a cure. Many people think this could be a possibility.

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    3. "Unfortunately, we have seen nothing that even approaches a cure."

      If you are diagnosed early for RRMS and start treatment you have a very good chance of living a normal life. Unfortunately this is not the case for the progressive subtypes. If you enter neurodegeneration there is not much that can be done in this point within medicine. But this is not restricted to progressive MS. You cannot reverse damage sustained from a traumatic brain injury either.

      So, the focus now should be the early identification if MS of all types and initiation of treatment. Advances are being made in progressive MS to shut down processes within the CNS such as treatments administered directly to the CNS (Rituximab infusions in the spinal fluid).

      But to say we are nowhere near a cure is disingenuous, as MS can be treated effectively for new patients. But I guess this is how nut case theories such as the CCSVI movements start, as well as the notion that nothing has been accomplished in MS science.

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    4. Anonymous, I very much appreciate being called a nutcase. That's helpful, especially coming from somebody hiding behind the "anonymous" moniker.

      Implying that the current frontline therapies represent something resembling a cure is completely disingenuous. Yes, these therapies can control relapses and enhancing lesions, and thus improve the quality of life of RRMS patients, but they do absolutely nothing to eradicate MS. Until we find the cause of MS we will not be able to approach a cure. If the goal is to turn MS into a chronic, treatable disease then we are on the right track. Not good enough for me, though, I want to see this beast slain. Great strategy for maximizing profits, though.

      Lemtrada MAY induce a state of "no evidence of disease activity" in a subset of RRMS patients. That's truly great, but again, this effect is hardly universal, even within that subset of MS patients (active RRMS folks with high degrees of inflammation). Even with this level of success, Lemtrada carries with it some significant risks, and its mechanism of action may "accidentally" address the core problem by essentially eradicating much of the EBV load carried by MS patients. So Lemtrada has broad-spectrum cure? Hardly.

      We still don't have substantial proof that the frontline therapies do anything more than improve quality of life in the long run. Therapies like Tysabri may inhibit the progression of the disease, but there is no data whatsoever on the long-term effects of the drug. We do know that the risks associated with it increase dramatically with time for JC positive patients, making long-term use problematic, at best. It has certainly been a boon for those who respond well to it, though, and to remain JC negative, or at least JC positive with very low antibody titers. No argument there.

      Progressive MS remains a murky conundrum. We are finally starting to see incremental progress, but we are talking baby steps, not strides.

      MS science certainly deserves credit for the advances made over the last two decades, however equating "treatment" with "cure" is obfuscation, whether intentional or not.

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    5. After being diagnosed in January with RRMS I am glad there are therapies available that can potentially halt disease activity. In particular, the longterm extension study if Copaxone reveals that those on continuous therapy for 15 years had stable or improved EDSS scores and 2/3rds had not transitioned to SPMS.

      This is in stark contrast to what you and the rest of the CCSVI mafia is spewing. This is only a first generation first line drug, we will have to see have effective the new therapies are.

      So, I would confine your evaluations to your condition which is advanced PPMS which I agree there is little hope for. But for the rest of us the future is brighter now than 20 years ago.

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    6. I'm a part of the "CCSVI Mafia"? Think you have me mistaken for somebody else. If you go back and read my blog posts on the subject, I think you'll find them quite balanced. Yes, I disseminated information as it became available, along with commentary, much of which amounted to advice not to let hope eclipse reason. If anything, I leaned more towards CCSVI skepticism than cheerleading.

      Furthermore, although I have been hypercritical of the pharmaceutical companies themselves, primarily in regards to their business practices, I've been advocating for the use of their products by RRMS folks for quite some time, often going so far as to call the use of Tysabri on JC negative patients a "no-brainer". I've tried many of them myself, in the hopes that they might slow the progression of my disease. Unfortunately, so far, that hope has been in vain. BTW, my diagnosis has never been firmly established, as my disease presentation is very atypical, something I try to stress on the blog.

      Best of luck with your diagnosis, I certainly hope you are one of those on whom the drugs have a tremendously positive effect…

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    7. Thanks, I hope I am one of the lucky few as well. Also, if you don't want to be known as part of the CCSVI mafia, it might be good to not be a memeber of the patient advocay group for the CCSVI alliance:

      http://www.ccsvi.org/index.php/about-us/patient-advisory-board

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  7. Not sure I understand the question. The problem is that big pharma decide what is worth researching, based on profit not efficacy for those of us coping with the symptoms of ms. A good example is the constituent(s) of cannabis - I wish this could be researched and made available (legally and regulated like alcohol or other drugs). Don't talk to me about sativex either - expensive and only prescribed when other drugs have been tried.

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    1. Re: "The problem is that big pharma decide what is worth researching, based on profit not efficacy for those of us coping with the symptoms of ms.

      Not true; I sit on a blue-sky advisory board for a Big Pharma company and their strategy is simple; is there and unmet medical need or not. If there is an unmet medical need then it is worth them investing in the field. They believe the business side of things will sort itself out if they develop drugs that truly addresses the unmet need in question. This particular Pharma company does not spend invest money on me too drug development. This company has development pipelines in neglected tropical diseases, orphan diseases, antibiotics and vaccines; areas that are very risky. They also have a large social responsibility programme in place and drug access schemes for their expensive drugs in developing countries.
      Pharma is not always the devil you think it is. We also see and hear what we want to see and hear; we need to really think carefully before bash pharma indiscriminately. We need their investment to tackle progressive MS and numerous symptomatic problems that MSers have to live with. We need to nurture the partnership, not kill it.

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    2. Researching the ingredients. We know what the main active is and this is THC. However this is a good example of overpriced drug. It is unlikely to QALYfi because at the price NICE will think it is not cost effective. Have a lower price and it would not be a post code lottery.
      This is where pharma greed takes over. I have met the company head honcho and it has always been clear he is out to make a buck.

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