@Veritas

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Veritas

sign my petition please,

Please sign my petition to have HSCT recognized as an optional treatment for MS (click on link) Thank you. https://www.change.org/p/provide-hsct-for-multiple-sclerosis-as-a-recognized-treatment MS, .after 15 years or so, may become costly since disability grows with with MS. Many of us, may eventually need palliative or custodial care.. Anyone who has a chronic condition that gets worse, like MS, should have the choice of having treatment to have it stopped now - as opposed to having to spend money, sampling different drugs for three or four years, then having to go to try another MS drug, and frequently getting various side effects. The fallout from side effects from MS drugs can also be costly. Annual costs of MS treatment in Canada are approximately 100,000 MS patients ( Cdn MS Society fig.) X 2/3 (patients taking MS drugs to control conservative figure) X $60,000 (median Pharmacare annual cost drug) = annual MS drug cost $4,000,000,000 annually. Most all people upon being diagnosed with multiple sclerosis are quick out the door, in terror, to get on one MS drug or another. MS drugs are very expensive, seeming to increase in price by leaps and bounds. Many people can’t withstand a drug for more than 5 or so years, some even less, due to either side effects, or the drug isn’t holding back the ravages of the disease effectively enough. New MS patients are commonly started with an immune modifying drug. These are reported to only stop one third of MS exacerbations. Usually after some years on the drug, it is found that the disease course is getting worse. The patient is then switched onto immune suppressants. These, too, have side affects. After you exhaust these former drug types then you may be eligible for Lemtrada. MS patients taking immune suppressant drugs may face a risk they will develop Progressive multifocal leukoencephalopathy (PML), a potentially deadly disease, as people on immune suppressant drugs for a long period of time can develop low lymphocyte counts, with many people carrying a dormant, underlying JC virus. PML has a mortality rate of 30-50% in the first few months following diagnosis but depends on the severity of the underlying disease and treatment received. Another added healthcare cost, those who survive PML can be left with severe neurological disabilities. The 50-70% that survive from PML may also need custodial and/or palliative care. Immune modifying MS drug treatment also has its problems as it isn’t as effective as the immune modifying drugs. Whenever you are modifying the immune system, it may develop side effects. I developed an idiopathic allergic reaction to Copaxone, as well as chronic urticaria, angio-edema, and a histamine intolerance that lasted for years after I stopped taking Copaxone. Copaxone is about $7500 per month in the US. An additional health cost ensued as I had to use the ER facilities at my local hospital about 12 times over a 1 ½ year period. I was hooked up on an EKG at one point, given an Epi-pen at another time, given epinephrine injections, and had to be watched for hours to ensure my throat didn’t close up from urticaria, etc . I finally was able to resolve this condition through the help of a Director, Pharmaceutical Outcomes Programme, UBC and BC Children’s Hospital, who through my family doctor, referred me to a rheumatologist to rule out whether I had developed yet other autoimmune disease, and then an immunologist, who diagnosed a chemically induced histamine intolerance. All MS drugs (except for one, Lemtrada) do not stop MS. They only slow it by 30-40% . Lemtrada has a 65-78% remission through drug trial reportings, (not really a high enough figure to say it stops MS). Now contrast it against the "hold out" treatment, HSCT. HSCT is a successful, common, worldwide performed, chemotherapy and (patient’s own) bone marrow transplant that is performed for cancer. It has been around since the 1960s and performed thousands of times on people up to and including the age of 65. It has been found that the off-label use of this same treatment for MS can stop it. The chemo wipes out the aberrant immune system; the re-infused stem cells develop into a new antigen naïve immune system. The disease is halted. Is it because it has been relabeled, “Autologous Hematopoietic Stem Cell transplant”, that it sounds like new technology? HSCT when performed by experienced specialists had a morbidity of 1% or even less. Northwestern University also reports that there is a 91% success - halt to MS. The other 9% may get a relapse but the disease course is extremely slowed; and unlike Lemtrada, there isn’t a large risk to get a fallout disturbed autoimmune problem, nor organ failure. Why is it that one group-type of diseased patients can get this treatment, yet other groups with autoimmune disease, like MS, cannot, especially when the mortality rate for the procedure is the same for all groups? This is discrimination and has no basis of logic. Are people with potentially deadly chronic autoimmune diseases second-class to patients with cancer - leukemia? What is key to maintaining low morbidity for the HSCT procedure is not the nature of the patient’s disease, whether it be cancer or MS, (as long as patients are otherwise healthy) but building experience with the procedure which is difficult to achieve in very small, narrow, restrictive stem cell trials. Therefore, how good is the data from a stem cell trial, compared to a full-blown facility performing this procedure hundreds of times in a year on a wide variety of patients? You can’t CURE MS unless you STOP it first. http://www.sciencealert.com/stem-cell-treatment-improves-disability-in-50-of-ms-patients-in-two-years