Where are the Cures?
An interview with Myelin Repair Foundation

PatientsLikeMe partner, Myelin Repair Foundation (MRF), is a nonprofit organization devoted to reducing the time it takes to discover and develop treatments for multiple sclerosis (MS) patients.  Recently, the MRF launched a campaign called “Where are the Cures?” – a site dedicated to a greater understanding of the barriers slowing the discovery and development of new patient treatments in all diseases.  PatientsLikeMe co-founder Jamie Heywood asked Scott Johnson, President and Founder of MRF, about the campaign.

headshot (Jamie) What’s the big idea behind Where are the Cures?
picture-097 (Scott) The big idea? Finding a way or ways to accelerate the development of new patient treatments.Developing new medicines or treatments for complex diseases is extraordinarily difficult. But it is not impossible and it should be happening at a faster rate than it has been. I believe the single most rate-limiting factor is the failure to move promising scientific discoveries made in academic laboratories into the commercial development pipeline.The problem is fairly simple. On the front end of the value chain, academic laboratories are spending upwards of $40 billion a year in government and non-profit dollars to make basic scientific discoveries that may be potential drug targets. On the back end, the pharma industry is facing a crisis of grand proportion as a result of its dwindling pipeline. The obvious question is why isn’t pharma reaching into this vast pool of potential drug targets to fill their pipeline? Because between the two is what is known in the industry as the Valley of Death.I think two things primarily contribute to this disconnect. First, most biological discoveries made in academic labs are not patented. Without the clear ownership that patent protection provides, biopharma is unwilling to make a multimillion investment in drug development. Second, there is little to no funding available to conduct the validation studies necessary to fully demonstrate that the basic scientific discoveries made in academic laboratories will truly and safely impact the disease state in humans. Without this validation, again, the perceived risk to pharma is too high.Knowing this, it’s shouldn’t be surprising that so few treatments for difficult diseases are coming to market.So how do we capitalize on the promising discoveries made in universities and feed that pipeline? We address those two problems: protecting the IP and funding validation studies.We are doing this at the Myelin Repair Foundation and it can be done in other medical research. But it requires an open mind and a set of shared incentives that puts the patients’ needs before other current incentives.
headshot (Jamie) As a part of the campaign, you launched The Patient’s Manifesto, a declaration that the medical research system is broken and a call for massive change across industries.  Why should a patient with life-changing condition sign it?
picture-097 (Scott) We created the manifesto because we wanted to bring attention to the problem and provide a venue where new ideas would be talked about. There is a lot of innovation going on in the industry but we have to find ways of sharing it. Why should patients sign the manifesto and encourage others to do the same? On the premise that the squeaky wheel gets oiled first, we think that we will be more successful at bringing public attention to this problem if there appears to be a significant groundswell of people who care. The millions of patients and their families living with chronic diseases are the most motivated to create change. There is no implied promise here. It’s all about building awareness and attracting attention in a way that will spur change.
headshot (Jamie) Both our organizations work to help let the patient voice be heard.  What do you think a patient’s role is in making our research system more efficient?

picture-097 (Scott) I think the entities that are best positioned to tackle the Valley of Death are the non-profit disease research foundations like the MRF. Their only motivation is improving the quality of life for patients. Because we are not driven by academia’s need to “publish or perish” or by pharma’s need to increase shareholder value, we have the freedom to move among and between the players in the value chain and facilitate the process on behalf of patients.  It is largely patients and their families who support these non-profit organizations and for their investments they have a right to ask for accountability. While investing in basic research is an absolutely essential part of the equation, it takes more than that to get a drug to market. Patients should be asking the organizations they support how they plan to actually accomplish that once the basic science is completed. I think as patients, we understand that this isn’t easy. But we don’t have to sit back and be satisfied with the status quo.
headshot (Jamie) No we don’t, Scott.  Thanks for talking with us about the campaign.  For those of you wondering, yes I’ve signed The Patient Manifesto.  Have you?  Go to www.wherearethecures.org for more information.
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5 thoughts on “Where are the Cures? <br> An interview with Myelin Repair Foundation”

  1. Pingback: PatientsLikeMe Co-Founder Interviews Scott Johnson | The Myelin Repair Foundation Blog

  2. Patents give pharma monopoly profits. They spend some of these profits on several things that annoy me: direct advertising to patients, freebies for doctors, and lobbying Congress. I think we should tax exactly those activities to supply funding to cross the valley of death and a few other things. Off hand, I’d like to see a one-to-one tax on the advertising, a two-to-one tax on freebies, and a ten-to-one tax on lobbying Congress.

    Pharma gets to set their own prices for patented medications and have those patents protected and defended in our courts. They get their income from our citizens who are in need of those medications. As a free society, we should use our taxing authority to guide behavior and to support needed infrastructure.

    With our present constitution, Supreme Court, and the best Congress that money can buy, we should take advantage of pharma’s huge and endless stream of income that we both guard and supply to make the entire system work better. If these NEW TAXES end up causing pharma to rebalance their spending profile, that would be exactly right and would benefit our whole society.

  3. I think pharma is price fixed and should be legally investigated as to how prices are figured out for each product. I do not agree with taxing the freebies. Freebies or samples are the lifeblood for senior citizens,disabled and poor people. As I wait for my appointment I see the well dressed salesperson come in and wait to see a doctor. I usually quiz them about their products and their side affects, or dependency problems. But them I see them handing out products like Lyrica or Cymbalta like candy to the doctor, who treats only poor people.
    In my opinion, training doctors about real life efficiency of drugs as well as side affects and most importantly interactions. Doctors always depend on the patient for the list of meds they are taking. Doctors are trained in family of medications but that seems to be it. They depend on the salespersons information. Sort of biased. Also train the doctors on the latest studies with nutritional supplements. I had a psychiatrist actually suggest I stopped Cymbalta and Welbutrin and try 2000 mg of omega 3 fatty acids instead for depression. That was a great suggestion as I already took fish oil for chronic pain. The doctors do not know how difficult it is for some to get off certain drugs and the withdrawals.
    When managed care was forced upon us I took it literally and managed my own care with the internet, but most patients do not do this. They depend on their doctors for everything. Patients also have to be trained to bring in a list of medications to the doctor so the chart can be updated. Simple things that can make the medical care in U.S. much safer and more efficient.

  4. When my prescribed medication Provigil will no longer be covered by my insurance company, I will be taking other generic forms of the same thing. Thanks to friends at the Patients Like Me site, I was informed of availability of the drug at the health food store. I truly wish my neurologist had instructed me to go there in the first place. Of course, the drug companies would NOT want you to know about this!

  5. I have a question. What causes –FUZZY SPOTS ON THE BRAIN– as the doctor called it when he looked at an MRI of my head. He, at that time, told me I had MS and the spots on the brain is from the MYELIN losing its coating. What other thing may cause that as the MS specialist in Little Rock, AR said it wasn’t MS and no one has ever said what it is. I have had other MRI’s since then of my head and the FUZZY SPOTS are multiplying slowly. Can anyone lend some light on this situation. I am Female heading for 60. Thanks to anyone who might be able to put some light on this for me.

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