Addendum

In FY2015, the National MS Society will be spending $52.3 million on research, according to a friend at the NMSS. The NIH is projecting that it will spend about $103 million in the U.S. A recent analysis by the Multiple Sclerosis International Federation (MSIF) indicates that in the U.S. we provide about 50% of the total spent on MS research by MS Societies internationally, so we can extrapolate that between the US, other MS Societies, and NIH – $200 million US dollars is devoted to MS research annually. What pharmaceuticals and other private companies spend probably correlates to how much they can gauge out of patients, not to put too fine a point on it.
The NMSS has its critics, but my point is that MS is hardly an orphan disease. And they do exist. I, for one, am glad I don’t battle one of more than 7,000 rare disease, according to one online source. How about Emery-Dreifuss muscular dystrophy X-linked or Emphysema congenital lobar, Empty sella syndrome,
Enamel hypoplasia cataract hydrocephaly and Encephalitis lethargica?
Don’t forget Encephalocele. I am not making fun of these conditions. They are real and no doubt inflict very real pain and suffering. But good luck going door to door for dollars.
MS is the devil we know and is taken seriously in the world. Of course cancer is ahead of us in the pecking order. I can live with that.

20 Responses to Addendum

  1. Kim February 20, 2015 at 10:40 am #

    I couldn’t agree more, Richard! I always tell people, if I had been given a choice of diseases to be afflicted with, I would have picked MS! The amount of research being conducted, combined with the amount of funds that are being collected, is extraordinary! I can’t help but think, with all those sharp minds and all that money, there has to be a cure in the near future!

    • Louise February 20, 2015 at 6:42 pm #

      Pick MS? I appreciate the optimism about the research,but let’s not get carried away. For many it is a devastating and life changeling diagnosis. And for all the potential for devastation lurks. I’ve been the luckiest of the unlucky so far and do have hope for more good news. But pick MS? How about some typeII diabetes? And if I have to pick something potentially devastating or deadly, I’ll have something without an genetic component.

    • Richard M. Cohen February 20, 2015 at 9:40 pm #

      I am ewith you.

      R.

  2. Yvonne February 20, 2015 at 11:19 am #

    Difficult to find a cure when the cause hasn’t been determined. I have SPMS as of last 2014. No one can tell me why or how it progrssesses. Stem cell treatment is the hope for many diseases but it’s still hit or miss. Cure? When is the last time something was cured? Hopefully they can develop better stabilizing drugs for those of us that keep progressing through this dreadful disease. That small step would make many of us happy.

    • Richard M. Cohen February 20, 2015 at 9:42 pm #

      I do believbe cell therapy is the futiure.

      R.

      • Nik February 20, 2015 at 10:01 pm #

        Does this mean you see progress in you stem cell trial Richard?

  3. Elizabeth February 20, 2015 at 11:47 am #

    What boggles my mind is why DMDs still cost as much they do. We’re talking about people who are not going through maybe a year or two of chemo treatment, we’re talking about drugs that are necessary to maintain the quality of the lives of people for many years, hopefully.

    This is not a short term treatment, this is a life long commitment. I am off meds now because I can’t afford them. Let’s talk about that economically. I am on SSD. I can’t get any treatment because I can’t afford the meds and Medicare will only pay for certain drugs. I make too little money to pay for secondary insurance, I make too much money to get assistance. If I could get on something that would help me manage my symptoms and get me into a significant remission, I could go back to work. Then I could be off SSD, which I hate on so many levels. I’m in my mid 40’s. I have a lot left to give to my field. But it’s a bad cycle. Now I’m fighting United Healthcare to pay for my modafinil so that I can function during the day.

    NMSS is helping and hurting at the same time. It’s great that they indicate that someone with MS is not likely to lose their life to the disease, it makes us look like less of a liability with insurance companies and hopefully employers, but the truth is that we’re messy. We often look good so we don’t look like we need help getting through the day. But what lies beyond the fight to push through every day to work and live our lives, is much less publicized. Don’t pretend we’re all running and riding bikes, because it makes those of us who don’t have the strength to do that look like malingerers. I’m all for the research dollars. What about spending some money to educate people on the benefits of supporting people with MS by employing them.

    Ok, I’m on a certified rant. I get so pissed that some politicians say that SSD is full of people whose unemployment benefits ran out so they want to reduce the benefits. Trust me, my benefits are not enough to live on. If I could work, I would. Why not give tax breaks to companies who employ people with disabilities and let us come out of the closet. Let us work in an environment that allows us to use what we have rather than get rid of us for what we can’t do. Thank you for listening. Feeling “Stuck in the Middle”

    • Richard M. Cohen February 20, 2015 at 9:48 pm #

      I think they will bend. Aging Baby Boomers are breaking the syustem. Something has to give.

      R.

  4. Jeff February 20, 2015 at 12:13 pm #

    I think the unfortunate part is that the majority of research is money driven. I get it, I am not naive – money makes the world go round. But I am a believer that if you do what is right, you will get what is coming to you (OK, maybe I am a bit naive :)) I just wish we could put the patient first instead of the investors.

    Not sure if you saw the recent post by Wheelchair Kamikaze on this topic, but I agree with much of his sentiment: http://www.wheelchairkamikaze.com/2015/02/national-ms-society-fail-update-nmss.html.

  5. Jan February 20, 2015 at 1:07 pm #

    Wasn’t going to comment at all (have been rather chatty lately, lengthy, too, but…) Richard, I am aware of NORD, and think you are correct. At least MS is definable. (Finally gave up on getting Erythromelalgia listed on the Mayo Clinic site. Despite many of their papers published on it, it isn’t happening. Although I will say that MS, in this instance, is worse–though your point in general is on target, I think).

    Elizabeth, I hear you very clearly. Very. It’s all a lot to stomach, especially when we are relatively young. But at any age, really.

    Jeff, I read the entire post URL you included. A lot of very good information, thanks. I am two months shy of 10 years, no MS meds ever (and not extremely popular with the majority of neurologists, esp. with SPMS named as such for good reason). I liked the article’s take on dedicated employees v. the bottom line, an instrumental reason for my having never gone on the DMAs.

  6. Erica February 20, 2015 at 2:00 pm #

    We also need more accurate reporting of figures. They’ve been using those 400k in the US and 2.5m people world-wide for eons and they’re definitely nowhere near correct anymore. Without proper figures we can’t get more funding. Unlike communicable diseases which are required to be reported, databases for MS only scratch the surface of actual numbers of people with the disease.

    • Richard M. Cohen February 20, 2015 at 9:52 pm #

      Some say the 400 K figure is inflated. I do not know who to believe,

      R.

      • Elizabeth February 24, 2015 at 9:06 am #

        Not sure about the numbers, but I find Doctors start with chronic fatigue syndrome, which they are changing the name of to legitimize it, and are not helping with MS diagnosis. It took me 15 years to get diagnosed. Before that- 1. Migraine Varians 2. Fibromyalgia 3. Lyme disease 4. Lyme Disease with co-infections 5. Chronic Fatigue Syndrome 6. MS. But not necessarily in that order. Different doctors went back and forth between them because they relied only on bloodwork, symptoms, and Brain CT to show active lesions. Ultimately a spinal tap was the test that pulled the symptoms together and helped the neuro to determine the diagnosis. If you don’t get referred to an MS literate neuro, you can go years with the disease and never know. I was stunned, but ok with the diagnosis because I thought that at least I could start to get treated for the right thing. I mean seeing how well my sister was doing after 20 years, I was encouraged that I would start to improve. Guess it’s not that easy, but yes, will take it over the alternatives and will take it X 2 over having a very sick child, spouse, or family member. There is always something worse. That doesn’t make anyone’s struggle less valid, just opens the clouds during a rain storm and let’s the sun shine in. Perspective

  7. MB February 20, 2015 at 3:20 pm #

    I agree that MS is being taken seriously in the world. I think the excitement surrounding stem cell research and the potential for healing has caused many to sit up and take notice. People dig “miracles” and rally behind successes and want to be a part of them.

    As we’ve experienced through our encounters with the chronically healthy, everyone has an acquaintance whose sister’s friend’s mother-in-law’s step-sister once removed has MS and is either an accomplished tightrope walker or is on her deathbed. But it’s the knowledge of that person that makes donating to the cause a reason to feel good. When progress is made in “fixing” someone (remyelination), they will know that their contribution made a difference. They were part of the fix.

    So we are fortunate we don’t have a disease whose research dollars are dependent on the proceeds from a bake sale. We’ll leave the bake sales for funding public education.

    • Richard M. Cohen February 20, 2015 at 9:54 pm #

      Agreed.

      R.

  8. Yvonne February 20, 2015 at 11:52 pm #

    Some insurance doesn’t even cover injectibles for MS. Can’t imagine them covering stem cell treatment. Everyone waiting but most of us won’t be able to afford the treatment. Insurance companies need to catch up with advances in medicine. I can only hope it happens in my lifetime that everything aligns: treatment, insurance and access.

    • Richard M. Cohen February 21, 2015 at 7:32 am #

      Count me in on that hope. Patients do not pay for the trials. When FDA approval comes, who knows wehat the treatments will cost? If it is not pharma, maybe it will be affordable.

      R.

  9. Hannah February 23, 2015 at 4:03 pm #

    RE: Your latest tweet…

    lol lol lol lol
    who is Holly Wood?

    • Richard February 24, 2015 at 9:09 am #

      She is married to a baseball bat I know.

  10. Roni February 25, 2015 at 4:58 pm #

    My latest obsession is stem cell therapy. Yes, we are lucky in that we have one of hte diseases that isn’t completely forgotten, but I recently spent the day with a friend who donated bone marrow to his sister that was DX’s with Leukemia. As they were talking about the great match rate, and how she was “cured” I was getting ticked off. I mean, here I am sitting on the couch next to them with an incurable disease and bam! She was cured. Obviously, I’m exaggerating, but was for that brief moment jealous of cancer. Cancer? Crazy, I know. Anyway, let’s hope for wider trials of stem cell therapy so we can be cured too! if any of you are interested in reading (don’t worry about donating,not what I want to point out– just if you want to read my story about the day I was jealous of cancer.). I wrote it on my Climb event page. http://eventnyn.nationalmssociety.org/site/TR/Events/NYNGeneralEvents?px=12472466&pg=personal&fr_id=24296