Contributions

I was on the Internet, venturing down various rabbit holes. You never know what you are going to find out. According to the National MS Society, 55% of monies raised goes to research. They write that 34% goes to programs and services, 11% to fundraising. That raises an interesting conversation about priorities. My longtime friend, Clifford Goldsmith, a former Pres. Of the NMSS, donated generously to MS causes for many years. His daughter had died of complications of the disease. Right up until his death at 94, Clifford gave every penny to programs and services.

I used to tell Clifford that was like paying on an interest only loan. I argued that until we put more resources into research, there will be no cure. We will just keep paying off interest, assisting folks with MS. Clifford listened carefully but never changed his mind.   He wanted to give MS patients a better life.

I wonder if we are any closer to finding a cause and cure for multiple sclerosis.

MS is not an orphan disease, defined as a condition that affects fewer than 200,000 people nationwide. That means Pharma has not written us off. There is money to be made. Drug companies do important research when they believe there will be a payoff. Federal dollars go into research. But affinity groups such as the NMSS play an important role. I still believe more of their monies should go for research. I am sure many disagree. And why does 11% go for fundraising? Sounds like public television.

44 Responses to Contributions

  1. Christopher August 18, 2017 at 11:36 am #

    11% is a lot,. I can speak personally as one of the people who was helped by the NMSS programs, and I’m grateful they were available. But I do believe as well that more money should go towards research. I don’t think enough people understand how important research is in the bigger scheme of things, and I attribute that to our culture of really only taking care of things once they’ve gone wrong instead of being proactive and preventive for the larger majority.

  2. Louisa August 18, 2017 at 1:21 pm #

    Agree Christopher. There really are competing interests – services and financial help for those who are already damaged by the disease and research to protect others from a similar fate.

  3. Jan August 18, 2017 at 3:48 pm #

    I am very upset right now.

    Twelve years of MS, no MS meds ever; tons of eextra stress that I personally think impacted my initial “possibly benign course;” local doc wants me to go on Ocrevus (MS) and Ampyra (walking issues). The “lovely” web crawlers on FB flagged a more local neuro center doing a clinical study that, when I called, turns out to be a double-blind study comparing Tedfidera with another new version with possibly fewer side effects.

    Anyway, the really kindly contact said that she may be somewhat cautious re Ocrevus, in that it is so new and without longitudinal studies. (Their drug literature even mentions PML–not a 100% no-risk thing).Recall the Tysabri deaths–in time? I tested high for JCV antibodies.

    And now I have a major headache, once again, from this!!!

    So is no MS treatment at all really a potential for being bedridden in time?

  4. Jan August 18, 2017 at 4:45 pm #

    Also does anyone have any links related to if people do get PML, that people have recovered from that?

    • Christopher August 18, 2017 at 8:58 pm #

      Jan,

      I’m not trying to scare you but you don’t recover from PML they can only treat it,. And the treatment is imperfect and no guarantee that it will stop the process.,

      • Jan August 18, 2017 at 9:53 pm #

        Thank you, Christopher…that is also what my Internet searches netted. Not pretty, but honest info is always the best to know.

    • Christopher August 19, 2017 at 1:45 am #

      Brian,

      You’re right and we need both but I think the problem is with the 11% for fundraising which is ridiculous. One of the important areas for research is the universities, which are not beholden two big Pharma or the large societies and Foundations for MS. Even though you may be upset or aggravated with the speed of viable Therapies for MS there is some good news in other areas coming out all the time including this pretty awesome breakthrough from one of the top universities for research. [Link is below]
      Even though it isn’t literally around the corner and it’s still being researched l and tested only with mice it’s actually very close because the work is been going on for a long time. To be able to regenerate nerves in human beings with genetic engineering instead of stem cells, which are years away from being safely used, is pretty awesome and should give more hope to people then there is right now with the progressive forms of the disease.

      http://www.medicalnewstoday.com/articles/319011.php

  5. Kate Aquilino August 18, 2017 at 5:34 pm #

    There’s more money to be made making drugs treating the symptoms. Cure? Symptom relief? Not if pharma can help it. And they’re the ones doing the research.

    • Rita August 19, 2017 at 3:59 pm #

      All drug dealers know the money is in the “comeback”. No profitability in the cure.

  6. Brian L. August 18, 2017 at 6:46 pm #

    I need to chime in on this one. Of course research towards a cure is important and should be the primary focus of the NMSS. But let’s be careful to not minimize the impact of services. I have been going to an exercise class for people with ms for the last ten years, and it has been a huge benefit for me and many others who go. The ms society helps fund it, but they are starting to pull that funding and that has me really worried. While exercising will not stop the disease, its a great tool to have in the toolbox while we fight it. I’m in a wheelchair and my left arm is the only limb that functions anything like normal. My extremely limited mobility makes it easy for my body to waste away. This class gives me a chance to burn a few calories, make my heart pump a little bit, and force some deeper breathing. I can honestly say that for the first ten years that I had this disease, and did not exercise (the medical community advised saving your energy), my disability advanced rather quickly. Since the exercise, I’ve been able to deal with it much better. So, I guess my question is, should the ms society only shoot for a cure, which is only going to benefit those that are younger and less disabled? I have primary progressive ms, so until this April there were exactly zero medications that would help me, and even now that one treatment (Ocrevus) has a success rate of a whopping 25%. Millions upon millions have been spent to finally have this 25% ray of hope. Financing an exercise class is exponentially cheaper, but provides real results for many. Don’t get me wrong, I am truly thankful for the fact that there is now a treatment for ppms. But the money spent on services is really important also. And from a value standpoint, the return on investment is better when you consider the real improvement of many lives for less money.

  7. Louisa August 18, 2017 at 9:12 pm #

    I meant that services and financial support are very important for those who have already sustained damage (most of us by the time we are diagnosed) and that research for a cure or better treatments is a competing (for money) but also important need. Everyone deserves the best life possible, I certainly did not mean to imply otherwise.

    • Jan August 18, 2017 at 9:56 pm #

      Just saying that I always feel better when I swim.

      • Christopher August 19, 2017 at 3:47 pm #

        To feel so free like ancient Lorelei
        Swimming in the open sea
        Dreaming through an endless sky
        Nothing can touch me now
        No fear
        nor hate
        nor thoughts of Tempest Fury

        I’m free… I’m free

        • Jan August 19, 2017 at 9:04 pm #

          Yes, mostly free when in the pool!

  8. Sue in TX August 19, 2017 at 6:36 pm #

    But I dont feel free. I’m resting in bed now instead of other SAturday adventures because I got overheated on a quick errand. I hate MS. I dont know the formula for fundraising where dollar for dollar you start to get diminishing returns. One would hope that the MS society has used that information to allocate its resources but the fact that approx 1/3 goes to programs and over half to research sounds most likely a deliberate decision. I am however conflicted about how to allocate between reserach and programs. I want to fund the discovery of a cure but i also think people with MS need access to pool therapy, transportation, mobility devices, and exercise equipment designed for MS issues.

    • Jan August 20, 2017 at 1:46 pm #

      Oh and Sue, as nasty as all of this is, you can congratulate yourself that you at least wisely stayed to rest in bed–I am typically one who just pushes on and I can’t say it’s to my benefit.

  9. Jan August 19, 2017 at 9:15 pm #

    “One MS specialist who in February spoke with Piper Jaffray analyst Joshua Schimmer is likely to agree. That doctor told Schimmer he ‘wouldn’t be perturbed if a case of PML emerged with Ocrevus at some point as long as rates remained exceedingly low.'”

    Easy for him to say. What about the person being that statistic?
    ———-
    An Sue, so sorry: and I get that. Saturdays are not what I’d call fun. And right now my husband is out on a solo walk (because even getting through the house with my rollater can be tough).

  10. Jan August 20, 2017 at 10:55 am #

    So then, what does this potentially mean for me, as an individual re Ocrevus, with a high JCL test (but no prior MS drugs)?

    “While this newest case is unlikely to hurt the prospects for Ocrevus at this point, it’s a reminder that physicians need to stay vigilant even in the face of promising new drugs.”

    Well, do they, do their families, need to live with the potential challenges of PML?

  11. Christopher August 20, 2017 at 11:49 am #

    Jan,

    What state do you live in?

  12. Jan August 20, 2017 at 1:33 pm #

    Hi Christopher, I am from Illinois and mostly connected there but actually I live in Texas near Dallas and have for the past seven years–when I have seen the worst progression happen.

    When we first moved here seven years ago, people couldn’t tell–I even came out of figure skating retirement for a brief 15 minutes. Now, I barely walk and use electric Mart Carts.

    I came close to some gait therapy at UT Southwestern, but they wanted me to sign some ehregious attorney thing I would not. I actually had some very good PT sessions from my PCP locally that included aquatic ideas.

    Why?

  13. Jan August 20, 2017 at 1:34 pm #

    egregious
    Sorry about my spelling–an issue on my phone, it seems!

  14. Sue in TX August 20, 2017 at 2:00 pm #

    Jan, I just sign ergregious dr consent documents and say ” well, you know this waiver of liability won’t hold up in court if you are negligent or dont meet the standard of care”, and put a smiley face next to your signature. Neurolgists especially dont like to be told this before an LP. Try it. It’s fun.

  15. Jan August 20, 2017 at 3:20 pm #

    Thanks, Sue…I just don’t want to deal with any annoyances right now, after we had a very bad roofer sue us after my husband was hit by a car, we had hail damage, we canceled after they did absolutely no work and ordered nothing when we discovered they were not being upfront with how they should’ve been-and we think they took advantage of the situation; we won arbitration but had to pay our attorney a lot of money. Overall the situation was a good learning experience but extremely stressful I’m not going to deal with any potential issues!

  16. Brian L. August 20, 2017 at 6:22 pm #

    Jan, just a quick note, the exercise class that I go to is in Fort Worth, but there’s another branch that does the same thing in Carrollton. You said you live in the Dallas area. I don’t know if Carrollton is close to you but I wanted to make sure you knew about it. It’s free for people with ms. If you’re interested, look them up at mindsetfitnessandyoga.com.

    • Jan August 22, 2017 at 7:41 pm #

      Hi Brian yes I am close to Carrollton and will investigate that; thank you very much.

      I myself could be the biggest blockade here–I tried a couple of MS things locally a few years ago and could not emotionally deal with them– always very nice people but I likely still think I should be able to do is I had in the past –but perhaps attitude changes are in order.

      We have a pool at home and I swim every day but I’m not sure if I want to renew my local town pool membership because of the long walk into the place, so I will definitely investigate the link; thank you so very much.

  17. Christopher August 21, 2017 at 3:06 am #

    Brian,

    That’s really cool, thanks for posting that info.

    Richard,

    Haven’t seen you post any responses to any replies to your posts in awhile. Hope you’re doing okay, sir. Thank you for continuing to share your thoughts… always engaging.

  18. Pat Harper August 21, 2017 at 9:26 am #

    The National MS Society’s refusal to share any of its funds for research with The Tisch Multiple Sclerosis Research Center of New York is very disappointing. They have been removed from my list of donation recipients and my support (meager though it may be by the NMSS’s standards) goes directory to Dr. Sadiq’s efforts.

  19. Hilary August 21, 2017 at 8:38 pm #

    You hit a my nerve on this one for me. Check out where NMSS has their headquarters! It’s one of the most expensive buldings in NYC. They do a lot of great work but there is room for improvement.

    I created a 501c3 to direct my fundraising directly to institutions I believe in like the University of Cincinnati MS Waddell Center.

    Strikeout MS
    http://www.strikeoutms.org

  20. Vikki August 22, 2017 at 3:30 pm #

    Jan,

    I have to ask, if you are considering Ocrevus (Rituxin), have you considered Lemtrada? This medication seems absent in this conversation and it’s the only approved medication that possibly can stop progression? If you have not been on any other medications, it’s very difficult to be approved for, but in all of my research it is the only approved drug that can not only slow but stop progression. There is not a JCV risk. It’s five days infused the first year, then three days twelve months later. It’s a big time drug, I’m not going to lie about that. But if you are willing to invest a few years for the long term goal, it’s worth looking into. Good luck!

  21. Jan August 22, 2017 at 7:45 pm #

    Vikki, I have heard of that medicine but have not looked into it…I definitely will now, as the idea of the JCV risk is just a bit more than I can bear emotionally at this point. Thank you!

  22. Jan August 22, 2017 at 7:50 pm #

    Oh and if it does make sense I would not be stopped by the idea of difficulty in obtaining it…I I spent two years, 100 phone calls fighting Blue Cross because for s Mayo test II went to the restroom alone, and it was called major surgery that did not go over well with me out if cost and principle! People along the route were appalled, too; I recall writing 17 thank-you notes to various people at Blue Cross and Mayo who tried to help.

    • Jan August 22, 2017 at 7:52 pm #

      And please ignore my sloppy writing; this doesn’t work well for me from my phone!

  23. Jan August 22, 2017 at 8:02 pm #

    Oh golly the Internet information on Lemtrada is rather ugly also–anyone have any experience with it?

  24. Christopher August 22, 2017 at 10:29 pm #

    I am supposed to start it next month. I was concerned about the risks too, and then confused by the different opinions I received from different doctors. But then I got a few positive recommendations from really good doctors, and had the risks explained to me better. So now I’m not too worried about what I’m facing with the infusions. Especially after reading dozens of firsthand accounts of taking it, and the pretty impressive results from almost all the people taking Lemtrada. I will let you know how it goes… I will detail the experience on my blog, because it would be too voluminous to post here. And totally inappropriate since this is Richard’s space.

    • Jan August 24, 2017 at 12:14 am #

      Thanks…and your blog address?

  25. Louisa August 23, 2017 at 9:02 am #

    Good luck Christopher.! I have been following Lemtrada (Campath) for years. I think it should be more available. There was an excelllent story about it a few years back in the NYTImes about how the FDA application was mishandled and possibly even sabotaged for financial reasons, They raised the price so dramatically from when it was campath for leukemia. But it would still be so much less money than some of the DMDs because it is only a two time deal. I’be been on tysabri for five years. The financial incentives and the fact that the same pharmaceutical companies own different drugs that have different profit profiles is additional garbage to sort through when making treatment decisions for this horrible disease. Such BS. I saw this this morning, maybe some change on the horizon? https://www.reuters.com/article/us-pharmaceuticals-pricing-idUSKCN1AX2CO. Anyway, good luck with the Lemtrada,
    Christopher and do let us know!!!

  26. Christopher August 23, 2017 at 5:30 pm #

    Jan,

    I asked where you lived so I could ask my MS specialist neurologist if he knows really good MS specialists in your area. Hopefully it helps give you a better experience than you’ve had previously.

    The first is the Clinical Center for Multiple Sclerosis at University of Texas Southwestern Medical Center. He said they have five doctors and they are all really good.

    The second recommendation is a MS center in Round Rock, and the doctor’s name is Dr. Edward Fox. He said Dr. Fox is really good too.

    Hope this helps.

  27. Christopher August 23, 2017 at 5:38 pm #

    I just saw that you’ve been to UTSWMC before, so you’re familiar with them. Sorry I missed that.

    • Jan August 23, 2017 at 11:57 pm #

      Christopher, no problem, and thanks. A trustworthy high school contact went there, and my neuro has some affiliation there, too: good.

  28. Sue in TX August 23, 2017 at 11:07 pm #

    Jan, you’re at that hated moment a lot of us reach. It is hard for me to read here how much you struggle with the changes in your health. You gotta Fish or cut bait. Let go of the benign diagnosis from years ago. It’s no longer true. You’re too young to not give a DMD a try. But Time is against you if you wait. You’re welcome to stay with me if you want my medical center (email me). DMD Is hope. A divergence from your current trajectory.

  29. Jan August 24, 2017 at 12:11 am #

    Hi Sue, you are totally correct in that this is anything but benign. But a positive thing is that people have been really kindly when they see the rollator (and I typically may begin by working through doors with it, but if people are nearby they will either automatically help, or I even ask for door help).

    Tonight, I went to a rather fun work thing (enjoyable and didn’t even think about MS issues–rather nice). An event next door afterward was mostly upstairs with no elevator. I briefly spoke with a young man in a wheelchair: we agreed that it was a bummer to not have an elevator an sighed (old building, I think).

    And then, I went to the back and I thought, well what the heck…a kindly worker said he would keep it safe in the office while I slowly navigated the stairs with railings. And then, when halfway up, I looked back and someone took my rollator up the stairs for me–nice!

    I’ll look for your email, thanks.

  30. Christopher August 24, 2017 at 3:29 am #

    Everyone here has a legitimate right to feel left out, left behind and betrayed. But on the other hand we all have the right to be hopeful without being questioned or judged for that belief. Is that hope unfounded? It’s particularly murky in those deep waters since MS is such an enigma–a cruel, vicious, shape-shifting foe that seems to draw sick pleasure from revealing a little, and then slamming the door shut every time we get close to exposing its true identity. It truly sucks that there hasn’t been more headway, and the reason for that is multi-factorial just like MS itself. The reasons are a lot more complicated than just ‘big pharma is greedy’ or not enough money gets thrown at this research or that research. There is good reason to be hopeful going forward, near and long term. But it has to be balanced between reality and expectations.

    One example is stem cell therapy. First off it’s a real thing It already works for some conditions. I suggest checking out the CIRM website (www.cirm.ca.gov) and reading the stem cell basics. I understand the confusion and aggravation with the NMSS refusal to help fund the Tisch research, but there are probably very good reasons such as the fact that the technology is too new, which it is. Marc Stecker, who writes the very good Wheelchair Kamikaze blog, shares your disappointment, as he has written about all of these issues. The disappointment isn’t exactly without merit, but there’s more than just money issues involved. It might seem like an endless supply of capital might get us there sooner… it might. But the science is so complicated that it will take years to figure out how all the elements fit together. There’s the cells themselves, genetics, epigenetics, proteomics, and much more. Even with all the money in the world, it will take at least 20 years at least before any therapy is ready to help any of us. Doesn’t mean it can’t happen, but realistically it won’t happen soon. Therefore it makes more sense, in light of these facts, that the NMSS would forgo backing stem cell research for something else with more currently available. I believe more money should be invested in stem cell research, but I also don’t run a multi-million dollar organization that tries to help the greatest number of people possible with limited funds. Gotta be a tough call for them.

    There’s good news too. Just check out the link below. The biggest ‘wow factor’ drug is the Anti-lingo1 drug in phase 3 trials in Europe. If it works, it promises to restore some if not most function. Which means probably 3 – 5 years from now for us.

    I wish everyone well, and that things turn around soon.

    http://www.medicalnewstoday.com/articles/319061.php

  31. Jan August 24, 2017 at 9:50 am #

    Thank you, Christopher: wonderful information.

    • Christopher August 24, 2017 at 12:24 pm #

      You’re welcome. If anyone wants to keep up on MS news, you should regularly check Multiple Sclerosis News Today website. It’s run by Medical News Today.