MS Disabled people should have the same right to chemo HSCT treatments as Cancer patients

This is really a human rights issue when one group of people disabled by cancer can get it, yet people disabled with MS cannot. The mortality for both groups is about the same, yet MS patients have to wait for, almost, non-existent trials to be completed before we can ever get this treatment

The off-label use of chemotherapy/bone marrow transplant (blood cancer) needs to be allowed for patients with autoimmune disease, specifically Multiple Sclerosis (MS). This common treatment for cancer patients - is called novel, experimental treatment unfairly only for MS patients, though it has been performed thousands of times since the 1960s, regularly on patients up to age 65, refining the treatment process and making more safer than ever. This is the only treatment that puts MS into remission more than 90% of the time. Still it is not available for people with MS.
If healthcare ever goes to review Multiple Sclerosis, specifically MS Pharma Drugs Efficacy, Cost, Side effects versus cancer patients' off-label use of chemo/bone marrow transplant (aka HSCT Hematopoietic Stem Cell transplant) they will find the risks, efficacy and costs are less with HSCT. To date, no drugs stop MS. MS drugs only reduce exacerbations by 30-40%, leaving people with MS not only dealing with an ongoing degenerative disease but also with the MS drug’s side effects. Though many of the side effects are simply very uncomfortable, there is a significant noted amount of varying side effects that are mortal. These include Progressive Multifocal Leukoencephalopathy (PML), liver failure, kidney failure, and even some forms of cancers.
However, there is an off-label use for Chemotherapy. By using one’s own bone marrow transplant (own adult stem cells) it has only a 1% mortality rate. (It is possibly much lower - many treatment centers have performed on hundreds of for-pay-patients, but have never had a single mortality –close to 2,000 MS people paying for it worldwide). This is a commonly recognized and allowed treatment for patients with leukemia, having been regularly performed since the 1960s on patients up to the age of 65. This treatment STOPS disease progression for many people with autoimmune disease, especially MS. It was, in fact, discovered when some patients who had cancer and who also had an autoimmune disease, found that their autoimmune disease disappeared after their cancer treatment.
In Canada, we have had only very small drug trials using this procedure on a very small segment of people. It is called HSCT, Hematopoietic Stem Cell Transplantation. It should be not listed as experimental treatment as it is definitely not new technology and has already been used on some patients for decades.

In the United States, however, after President Obama's executive order 13505, which was basically “Removing Barriers to Responsible Scientific Research Involving Adult Human Stem Cells”, there are now large phase 3 national drug trials, at Northwestern University in Chicago. This treatment has results and puts patients with MS into remission, stopping 91% of the disease from proceeding further, with the remaining 9% having their disease so slowed that it is many years before they need to depend on drugs again. It is short of being FDA approved, but they have very large third tier clinical trials. Patients with $125,000 US pay for it themselves. As prescription drugs are covered only in private plans, many private insurers are footing the bill as they see that in 2 years they save on the future $60,000 annual MS drug cost gone after this treatment as the patient is in complete remission – or for the 10% so slowed they no longer need the expensive pharmaceutical drugs.
Even USA’s own National Institute of Health recognizes it: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4715306/
The cost of the procedure is about the same as for a patient who takes the approved MS drug Lemtrada, but with better results. Lemtrada only puts a patient into remission 70% of the time (CARE-MS I & CARE-MS II trials). Additionally this treatment takes 2 years to complete (5 days infusion year one, and 2 days infusion year 2) and, unlike HSCT, for the 4 years following treatment you have to watch the patient very closely for liver, kidney, thyroid failure, as well as developing Cancer. Lemtrada treatment has been banned by the FDA when used under the name Campath. Why is this much more dangerous drug treatment allowed when HSCT isn’t?
If a patient were to have HSCT, it not only stops their disease from continuing, it will save healthcare billions in Pharmacare costs and prevent people with MS from becoming incapacitated in their later years.
This treatment should not be held up in trials, it should be a legitimate treatment option, now! Dying With Dignity is before the courts, what about the right to live. This Program will save Federal and Provincial Governments billions of dollars and grow the middle class. For example if 100,000 people with MS (MS Society figure) X 2/3 of people with MS X $60,000 (avg. cost MS drug per year) = $4 billion dollars per annum.
If MS is not halted, approximately 80% of people with MS will end up on disability. (figure from Cdn MS Society) If our disease is arrested, then many of us can resume our working lives. This also grows the middle class, and will save money since not all of us will become so disabled we have to rely on Government Disability.

Conservative estimates :If 100,000 people do not get their MS halted, then as the disease progresses there will eventually be 80,000 people on Government Disability as they become unable to work – also a significant health cost. The cost of this disability is estimated at $12,000 per annum X 80,000 people = $960 million dollars. This does not include the cost if the MS patient needs custodial, palliative care in later life.
Please can we not consider this treatment and the obvious benefit of HSCT in treating MS?
This is also concerning people in other countries – Only the well to do, and perhaps some people with private insurance for pharmaceuticals that will foot the bill can get this treatment. The rest of us can literally just rot away until we are wheelchair incapacitated, can’t walk, can’t work, can hardly cook or clean for ourselves, later on can hardly dress ourselves, then die early of heart or breathing problems as our system is so weakened. There is a high percentage of us that facing the dismal reality of the last day maybe being your best day, every day, that they give up and take their own lives. http://www.medscape.com/viewarticle/852400 Why can’t we have the choice to live? This treatment stops this horrific disease, it should be allowed for us the same as it is for cancer patients.
PS: HSCT is also being used for CIDP, some forms of lupus, and scleroderma, rheumatoid arthritis, and stiff person syndrome, as well as some other autoimmune diseases to put them into remission as well. It seems so far though the most prevalent autoimmune disease being treated is MS, and I only know about this disease because I have it myself and have spent a lot of time researching it. I do know, however, that if off-label treatment of HSCT gets approved for MS, it will make it very hard not to start looking at it for other autoimmune diseases and so they should. It is unfair that one group of patients, cancer patients, can get this treatment and autoimmune diseased people cannot when the risks are the same, and the treatment works better than any other approved treatment in putting the autoimmune disease into remission.

VIDEOS of many people who have had, or are struggling to get, HSCT treatment: http://www.stemcell-immunotherapy.com/pub_vid.html

http://www.theguardian.com/society/2016/jan/18/cancer-treatment-offers-ms-patients-hope-after-remarkable-trial-results

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