Provide HSCT for Multiple Sclerosis as a recognized treatment option.
This petition had 2,167 supporters
Canada has one the highest rates of Multiple Sclerosis in the world. Multiple Sclerosis is a debilitating disease that greatly affects families due to its unrelenting degenerating nature. This is a human rights issue, (also very strongly a women's issue as 75-80% of this autoimmune disease are women), a family issue, people with disabilities issue, and an economic issue. 3 out of every 4 people with MS are women. (this is a horrifically miserable disease for anyone, however, - male or female).
Without this treatment people with MS develop disability which can not be reversed, shortened lives from accumulated disability.
Please sign this petition so MS patients and those with autoimmune diseases which can be improved with HSCT can receive appropriate treatment in Canada with the support of their family and specialist doctors
If you had a malignant, but slowly developing cancer, and were otherwise healthy, you would get be able to get chemotherapy [a Hematopoietic Stem Cell Transplantation (HSCT)] to stop the cancer.
Why can’t anyone see that this should be the same for people with MS (or any other autoimmune disease that can be halted by a reset). ?
The deviant immune system is wiped out by chemo - then you are reinfused with your own stem cells which regrow back your immune system - with no memory to attack the myelin (nerve coating).
MS is a degenerative disease in which you suffer continual loss – is that not malignant?
It almost seems like there is a deliberate stalling offering this procedure as a widespread option for people with MS.
There is too much making money off of people suffering from this malady, rather than halting it. There are approximately 100,000 people with MS in Canada. MS drugs for "slowing" permanent nervous system degeneration cost between $40,000 and $50,000 per year. That means there are several billion dollars spent every year in Canada on MS drugs to slow the disease.
However, even with HSCT as a recognized treatment there is still room for a lot of money to be made by drug companies in repairing MS, and to lessen the uncomfortable symptoms that go along with nerve damage, and for those people who do not want to go through the grueling process of HSCT.
Hematopoietic Stem Cell Transplantation (HSCT) - This is not a new medical procedure; it has been performed millions of times all around the world since the 1960's for treatment of cancer (now approximately 50,000 times per year) and has been used successfully to cure several types of hematologically-rooted autoimmune disorders since the early 1990's (such as MS, scleroderma, rheumatoid arthritis, lupus, CIDP and others). People should be allowed this treatment as an option.
However, as it involves chemotherapy, the treatment is both uncomfortable and expensive.
(There is an extremely small chance of morbidity – in the area of 1% - safer than getting deadly PML from immune suppressant medications for MS if you take the same drug for a long period of time).
However, to clarify, this is no longer an experimental treatment it is widespread available worldwide but only for those of us with the cash.
In Canada, more than a dozen years ago, at Ontario Hospital, Dr. Freedman has partnered with Dr. Harry Atkins, a clinician/researcher, in treating MS patients with stem cell bone marrow transplants. In essence, they take stem cells from an MS patient and purify and fortify them. The patient undergoes extreme chemotherapy to all but annihilate their diseased immune systems. The robust stem cells are then returned to the patient to rebuild a new immune system.
For a small segment of people with Multiple Sclerosis, there is some repair, but IMPORTANTLY for almost everyone the disease progression is HALTED. That saves money – no longer $40,000- $50,000.00 per year medicines such as Tecfidera, Tysabri, Gilenya, Copaxone, natalizumab, etc.
RE: CURRENT ACCEPTED TREATMENTS - DRUGS ONLY
None of the MS drugs ARREST MS. These drugs’ only claims are to perhaps reduce exacerbations by certain percentages, with no guarantees. All of these drugs have side effects, some very serious, as well. None of the drugs have any guarantee of halting MS, only slowing it. HSCT halts MS in about 80-85% of all patients who have had HSCT; even for the 20% that it hasn't halted, it slows the progression - better results than any of the drugs on the market.
Re: Copaxone - an immune modifier. (Personally I had a severe idiopathic allergic reaction- including chronic urticaria and angio-edema , from Copaxone that caused me to have to go to emergency at least 12 times over a 1 ½ year period- after I discontinued using it. I had to see many specialists to try to get my system under control. I had to be equipped with an Epi-pen. At one time at emergency I had to be hooked up to an EKG, as I was getting chest pains. All from my immune system being aggravated and modified by a supposed “safe” MS treatment).
Insult on injury, my MS still progressed even though I had taken it.
The interferons (Avonex, Rebif, Betaseron and Extavia) and glatiramer acetate (Copaxone), have been shown to reduce the frequency of relapses by about one-third. This means that a person having three relapses a year will hopefully only experience two relapses a year.* (reference
Most drugs are either immune MODIFIERs or immune suppressants. The immune modifiers can cause all sorts of immune disorders (Histamine Intolerance was mine).
In comparison - there is a far higher cumulative level of fatalities from approved MS immune suppressant treatments – (which are also expensive at about $50,000.00 per year )- examples - - Gilenya, Tecfidera, Tysabri, etc., than there is from HSCT. - all of these drugs which have a higher morbidity rate than HSCT used for MS has ever had.
Even when taking immune suppressant drugs for MS, MS attacks and lesion progression do still occur. Drugs do not halt MS but are to reduce the number of attacks.. Because this drug suppresses the immune system, you are vulnerable to getting PML – a deadly brain disease. I have had to have monthly blood and urine tests to watch my body chemistry. And I am still getting lesions, all the while now being at risk for a deadly brain disease. How is this better than HSCT?
The other type of MS medications are immune suppressants, which also are quite scary; these links are discussing a deadly brain disease you may develop after taking these drugs for a time:
HSCT works by partially or completely erasing the body's immune system memory. This effects a beneficial change of the body's overall B- and T-lymphocyte epitope (antigen binding)repertoire, inactivating autoimmunity (making the body's immune cells "antigen naive") which results in restoration of immune self tolerance. This is often referred to as "resetting" the immune system which stops the underlying MS disease activity & progression.
This is not experimental treatment - this is basically the same procedure used for many forms of cancer.
What is more unfair and sad is that this treatment is widely available if you happen to have the cash. It has created a two tier health care system – better healthcare for those who can pay.
It especially penalizes those who need it the most, people with families as they would think twice about taking out a $55,000.00 to $150,000.00 USD loan or mortgage to cover the treatment which is available in many many countries. This is wrong.
TWO TIERED HEALTH CARE SYSTEM - HSCT FOR THE HAVES - NONE FOR THE HAVE NOTS
HSCT (Hematopoietic stem cell transplantation) availability in Canada is important because many people with MS are now travelling overseas to countries such as, USA, Israel, Russia, Singapore, and Mexico at costs of up to $200,000. Why are these countries running these treatments, having success and yet Canada is not? Canada has the facilities and the specialists who are ready and able.
This procedure is currently readily available here for other illnesses but not for people with MS.
Canada is a leading country for our haematologists who perform chemotherapy on a regular basis. We could easily become a world leader for this procedure for autoimmune diseases like MS as it is the same procedure performed for cancer.
Even insurance companies are eyeballing plans for providing money for MS stem cell treatments. http://lsminsurance.ca/canadian/group-benefits-plan/manulife-group-critical-illness “access the best medical care, by covering treatments not covered by OHIP, including out-of-country treatments”
There are 2 types of HSCT – abelative and non-abelative. Hematopoietic means using your own stem cells, no donor issues – the likelihood of developing cancer is nil because you are using your own immune system.
1. ABELATIVE is the most harsh as they completely wipe out the immune system right down to the bone marrow. This one is the one with the most risk, but also is the one that has the highest success at permanently stopping MS. You quite often have to get reimmunized for many diseases after one year of allowing your new immune system to repopulate and develop.
2. NON-ABELATIVE wipes out the immune system but you keep your bone marrow immunity. It is not a high risk at all. You could almost go without the reinfusion of stem cells as you retain your bone marrow immunity. It is the one where you could possibly get MS back – but even if you did the return/progression would be very slow. You would probably not see any MS activity for many years. Still would be many years without needing to use MS drugs. 85% or better would never see another MS development again. This type is ideal for older patients.
Thank you for reviewing the above. It would be wonderful if Canada would be the first to step up to the plate and offer this treatment on a widespread basis. Other countries are skirting it but offering it for pay, especially internationally. It would definitely be a written line in history books.
Too many companies are making money off of drugs, which the government pays for through Pharmacare, etc. (again only slowing the degeneration at best – which is not effective or good enough for us with this disease.) – they need to change direction and make drugs to address myelin repair, reducing post chemo effects, spend more focus on other diseases).
More money in both the governments pockets, and returning people to a better, more productive life.
I think it would be wonderful worldwide to be the first to get going with this.
This would be the first step for a cure for MS.
1. This saves money – no more $40,000.00 to 50,000.00 per year for whatever MS drug of choice.
2. Lower the quantity of people needing to be hospital institutionalized in later life. Because of its’ relentless degenerative nature, people with MS will usually, after 10 years or more become, wheelchair bound, needing all kinds of expensive, adaptive equipment. When they get older most will need home care, or institutionalization. If arrested earlier, this cost will never be needed.
3. Grow the middle class - It is the exacerbations that interfere with working – if no more attacks, the disability is arrested, many may be able to return to work and get off of disability. We have one of the world’s highest rates of MS in this country.
4. WOMAN'S RIGHT ISSUE 3 out of every 4 people with MS are women.
About 75-80% of MS cases arise with women- most all cases of both sexes arise in the 40’s affecting people in their most important period for a working career, also the age that many people have dependent children.
5. On the world stage - we would look very progressive and put out there what is already known – we can halt MS.
6. Gets rid of an unfair 2 tier health system – the wealthier with money just simply pay to get it done. For the middle class person with families – they face losing everything because to raise this money means removing all capital they own to raise the funds – at the expense of their family homes, children’s post secondary schooling and opportunities.
7. There is no downside to this – it can only be a way to increase money for federal coffers to spend in other more productive way for our country.
8. This gives people with MS hope and an opportunity to rejoin the working world.
9. Canada is a world class cancer treating destination – the exact chemotherapy procedures used to eliminate cancer are also used for MS. The earlier we allow these treatments, the better chance we become a worldwide leader in MS treatment.
10. By accepting stem cell treatments for MS, we do not have to waste any more time with the cost of stem cell trials for halting MS. Stem cell trials can be focused on other diseases, and continuing with stem cell trials for repairing for MS and all other diseases that have not yet been as well tested.
11. We can never find a CURE for MS unless we STOP it first!
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