Columns News MS Patients Want Research to Focus on a Cure, Not Possible Causes MS Patients Want Research to Focus on a Cure, Not Possible Causes by admin | July 1, 2016 Share this article: Share article via email Copy article link As interesting as it can be for patients with MS who hear about work being done to find the causes of multiple sclerosis, what we really want to see is research that is carried out to find a cure. Nothing more, nothing less. Of course, the development of new treatments is important, but the cure is what we need. And while it is good that a new study has investigated the relationship between obesity and MS, and found what researchers described as a causal role, the results can only benefit people who haven’t got MS yet. It does nothing for people who live with this invited and unwanted guest. We just want a way to evict it. The news that a new therapeutic vaccine was under the judgment also came out this week, but that resulted in a telling question in our comments section: “AGAIN, why has PPMS been excluded from the trial?” asked Steve John. Well, no doubt the researchers had very good reasons, and on this individual point, I am not taking sides. However, in general, patients with PPMs tend to feel hard by, because, as of right now, there are no medications approved to treat this type of the disease. A first for PPMS? OK, now we have a drug that could become the first approved for primary progressive MS treatment. Our news story on the subject explained: The U.S. Food and Drug Administration (FDA) is giving priority review to a request to approve Ocrevus (ocrelizumab) as a treatment for both forms of multiple sclerosis, the drug’s developer, Genentech, announced. If the company’s Biologics License Application (BLA) is approved, Ocrevus will become the first drug able to treat patients with either relapsing or primary progressive MS. By designating the review a priority, the FDA will make its decision within six months rather than the standard 10, and release that decision on Dec. 28. Approval means the drug will be available for patients in the U.S. If it is approved in the United States, the drug will soon be subject to review in Europe. But we cannot please everyone all the time, and some simply don’t want to know about any medications. They are more afraid of possible side effects. One of the comments I saw in an MS group on Facebook, in response to the news of ocrelizumab, was: “Another poison of the large pharmaceutical companies.” And, although I agree with concerns about side effects, the situation is that we may be able to go from the absence of any medicine to one that has been approved. That said, some of us may prefer to follow the path of HSCT. Did you believe that it was purely for Relapsing MS? If so, you really need to rethink that. Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this blog article are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Multiple Sclerosis. Print This Page Tags HSCT, MS research, ocrelizumab Comments Phil Longford Anyone who has watched 'The Fugitive' is going to be suspicious of new drugs. With any illness, the only patient enters in to a game of Russian roulette, just hopefully better odds than the usual 1 in 6. Obviously, it all boils down to how affected you are by the MS, and the potential improvement. And the possible side effects, which sometimes include death, which would be a bit of a bugger! Reply Hi Phil, as a PPMS patient myself, I do agree with your comments about possible side effects including death. The humour may be dark, and I don't mean to offend, but death is one surefire 'cure'. Reply jojo jones Big Pharma, MS Societies and basically all are wasting what precious time we have left. Why are they rehashing and retesting the same drugs over and over? To prove their worth? While us patients waste away day by day!! Reply Lynda Strecker You, jojo jones are so right! Maybe a class action lawsuit would be in order? I was diagnosed in 1993 and do not take any of the ms drugs. I have a friend who's a Dr. in Sweeden. She also has ms. She attended some seminar a few yrs. ago and reported that the presenter wrote the following on the board as they entered the room."CURES DO NOT EQUAL PROFITS" How obscene and disgusting! Reply Hello Lynda, the presenter at the seminar your friend attended is certainly not alone in his or her opinion. There is a significant number of MS patients who believe similarly. I am not saying they are right but that logic is on their side. Logic says that disease modifying drugs provide a very healthy and continuing profits for pharmaceutical companies while discovery of a cure, although profitable in itself, would destroy the income they enjoy now. Putting logic aside, could any company really be that profit-motivated? Surely not! Reply Martin Matko How many people have to be sick or disabled for an economy to run smoothly. CCSVI is a treatable congenital Recognized medical condition when people diagnosed with MS treat with Venoplasty CCSVI MS Symptoms often Ease/DISAPPEAR #CCSVI Venous Hypertension>microbleedings>iron >inflammation>free radicals >neurodegeneration #multiplesclerosis END M$ TREAT CCSVI Reply Phil Longford Agreed, but perhaps a little drastic? Anyway, in the immortal words of Monty Python, "Always look on the bright side of life!" At least the MS gets me out of walking the dogs! Two things I am trying, with the PPMS. Wahls Protocol Diet. No gluten, no dairy, no eggs, etc. No noticeable benefits yet, but give it time. Also, at out local Samson MS Centre, they do a weekly Baric Oxygen Treatment. Pure oxygen for an hour. No immediate improvement, but, if I miss my session, I seem to feel worse. So perhaps it does help. Anything is worth a try (even exercise-although you have to draw the line somewhere!) Reply jojo jones I think we need to be a bit drastic. I like walking my dog. I have heard good things about the Oxygen, tried the diet and whatever else has a bright spot. Or perhaps a cocktail..... Reply Phil Longford Now you're talking! Pimms with lots of fruit, cucumber, mint! And we can blame the staggering, on the MS! Off to get some lemonade. Sun is shining. Wimbledon AND Henley are on. Getting the BBQ warmed up. Monty Python song ringing in my ears. Reply Hi Phil, sounds good. Reply JD It is taking too long for a cure! As long as neurologists are the gatekeepers they will continue to obstruct progress. If I hear one more time the body is complex I think I will jump! Such a statement is like, I want to be a musician but, I'm tone deaf! FIGURE IT OUT! ENOUGH... GET IT DONE! Reply Hi JD, i think you are on the right track. Reply Helen Scott I agree totally. However cure presupposes we know what the cause is. I am however getting a little bit tired of funding PhD's. It's about time that neurologists stop soloing MS and allowed many disciplines to collaborate. ⎌itch Big Pharma whose primary interest is in keeping us sick. Reply jojo jones Cure, profit etc. I called Biogen and asked to speak with the President/CEO after reading the below. My question was how much money do you put into research for a cure for MS. I got no answer. "Biogen Inc., the largest publicly traded Massachusetts company, paid its top executive total compensation of $18.6 million last year, according to a regulatory filing. The pay package for George A. Scangos, who took over as the Cambridge biotech’s chief executive in July 2010, included a salary of $1.4 million, a performance-based bonus of $4 million, stock awards of $12.2 million, and more than $1 million in other compensation in 2014. Biogen sells a portfolio of drugs to treat multiple sclerosis and hemophilia. Profits at Biogen increased 58 percent to $2.9 billion in 2014, while sales rose 40 percent to $9.7 billion on the strength of three multiple sclerosis “blockbuster” therapies — injectables Avonex and Tysabri and the oral medicine Tecfidera — each generating more than $2 billion in global sales." Boston Globe I think we should start a petition and demand that at least 5% of their profits and all drug companies go into a cure fund. I hope you will publish this. I will start and hope you will help me start the movement. Time is something we do not have. Reply jojo jones https://msblogbank.wordpress.com/ please see above and add your name. Jojo Reply Hi Jojo, obscene salary. Reply JA I am sorry to say that no monoclonal antibodies (such as natalizumab, ocrelizumab, alemtuzumab, etc) penetrate the blood brain barrier (BBB), unfortunately. Less than 1% of research money probably goes to understanding how to develop drugs that do cross the BBB. The BBB is like a molecular sieve, protects the brain, but also keeps the drugs out based on size of the drug molecule, etc. So, before one talks about cures, one must understand that these drugs 'work' but it is a relative term. Keep in mind there is no gold standard except 'cure'. It is like saying where are the cures for ALS, Alzheimer's, Parkinson's or Huntington's disease(s)? Where is the cure for asthma or even blood pressure or diabetes? The list goes on.....but to even attack MS at an early stage of the game, doctors have to treat MS with drugs that penetrate the BBB and kill cells that initiate the disease process and keep it alive. Only then one can hope for parity. Currently, most drugs such as monoclonals are geared to act outside the brain. JA Reply ellie We have the closest thing to a cure we've ever had....causing permanent remission. It's called HSCT. I'm lucky I was able to get it through a study in Chicago and my insurance covered it. I have RRMS. Others are not as lucky and have to pay for medical tourism...but most do not know this option exists! How do we get the word out so people can get their lives back? Reply Padjazz You can't find a cure if you don't know the cause. But what we have now are band-aid solutions (current MS drugs) and futile smokescreen causes (obesity and co.). Reply ellie baum we do know that it's an autoimmune disease....so by disabling the current immune system with chemo and giving an MS patient a new immune system with their own new baby stem cells for a "reboot" it does work. There are many of us that are living proof of this. It's called HSCT...it's chemo that makes it work. It's essentially the same thing as a bone marrow transplant for cancer. Reply Byebye MS I'm so tired of the New Miracle Drug news. Like others I was able to turn my health around with the Overcoming Multiple Sclerosis *Lifestyle*. Not a diet. Diets are temporary. One must make lifestyle changes that include diet, budgeting energy, and controlling stress. You are choosing your new cell material with every bite. I was able to keep my head above water by following this method strictly. What absolutely sent me into recovery was a simple Upper Cervical Atlas Orthogonal adjustment. Imagine that. Reconnecting my nervous system by freeing the vagus nerve, freeing impinged blood vessels, and allowing for proper flow of spinal fluid to cleanse my brain actually allowed my body to start healing. It is not a cure but see Dr. Erin Elster's studies and Dr. Raymond Damadian's research for more, including a halt to progression. No drug. No chemo. No surgery. It's not conspiracy talk to make the true statement that there's no money to be made by pharma if we actually get better. That's business. But our hedonistic society created exactly that. We don't believe in the power of our own bodies. We want to keep doing the same things, make no effort ourselves, and take a pill to get better. We want a fast food cure and we pay for it. Sometimes with our lives. Well, I for one have left that all behind and am enjoying life again. Thanks to my very own body. Reply jojo jones Independence Day! We need an MS ACT UP!! AIDS Coalition to Unleash Power (ACT UP) is an international direct action advocacy group working to impact the lives of people with AIDS (PWAs) and the AIDS pandemic to bring about legislation, medical research and treatment and policies to ultimately bring an end to the disease by mitigating loss of health and lives.[1] Reply Martin Matko #CCSVI Venous Hypertension>microbleedings>iron >inflammation>free radicals >neurodegeneration #multiplesclerosis Reply Veritas When other autoimmune disease drug trials involving have caused serious side effects, what is "acceptable risk" for an MS patient? . From 2015. IMPORTANT TO UNDERSTAND---the trials with serious infections and deaths reported were at 52 and 48 weeks. There were 6 deaths associated with infections in the Rheumatoid Arthitis phase III trial http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3911947/ There were 5 deaths associated with serious infections in the Lupus phase III trial. http://www.fiercebiotech.com/biotech/patient-death-mars-promising-ms-results-phii-ocrelizumab-trial http://www.genengnews.com/insight-and-intelligence/ocrelizumab-one-size-does-not-fit-all/77899315/ Ocrelizumab has now been FDA fast tracked for MS, even with the previous issues identified from Ocrelizumab treatment for other autoimmune diseases. It makes one wonder how many more deaths of MS participants in the trial would be reported if patients on Ocrelizumab were followed for 5 years? As a person suffering from Multiple Sclerosis, I am getting tired of feeling like a lab rat, and knowing with these types of potential side effects. When I am taking these drugs with proven side effects, I am a lab rat. It really ticks me off because there has been so many roadblocks against non-ablative autologous HSCT when the efficacy has been proven to be in the 90% ile and because the bone marrow is not ablated, the mortality is less than 1% - far better than any approved drug on the market. I am guessing because no one makes any money off this procedure it will continue to be buried as experimental. There is a whole underworld, though, growing of HSCT veterans sharing their results outside of the tiny limited drug trials. As the years go by, we are finding these HSCT veterans' are still having their MS in remission; this is even including all types of MS including progressive. Reply Hi, I agree but I believe you are overstating the mortality rate for non-myeloablative HSCT. I understand it is nearer 0.5%. Reply Leave a comment Fill in the required fields to post. Your email address will not be published. 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