There are many people in the world with devastating autoimmune diseases, including Multiple Sclerosis (MS); Stiff Person Syndrome, the extraordinarily rare (1:1,000,000 people) disease that I have; Scleroderma; Lupus; Type One Diabetes; CIDP, and other blood-borne autoimmune diseases.
The most common autoimmune disease is MS. Many people with MS become disabled and wheelchair bound.
Over the past approximately 15 years HSCT (Haematopoietic Stem Cell Transplant) has been proven to be a very effective treatment for MS (and other blood-borne autoimmune diseases). It stops disease progression in approximately 80-90% of MS cases & it can improve prior damage for many people, especially if they receive the transplant early in the course of their disease. Several thousand people with MS have had stem cell transplants over the past 15 years, and based upon the published results, stem cell transplant appears to be the most effective treatment currently available for MS.
Based upon the success of patients with MS (and a few other autoimmune diseases) that have received a stem cell transplant, three hospitals in the United States (the Fred Hutchinson Cancer Center in Seattle, the Colorado Blood Cancer Institute in Denver, and Northwestern University in Chicago), and The Ottawa General Hospital in Canada, have implemented clinical trials to use stem cell transplants to treat people with Stiff Person Syndrome. Approximately 23 people with Stiff Person Syndrome have received stem cell transplants over approximately four years. So far, the preliminary results look very promising, at least for those that received the treatment over 18 months ago. Generally speaking, the results for most patients with blood-borne autoimmune diseases that have been treated with a stem cell transplant are very good.
One of the problems in receiving this cutting edge treatment, is that many neurologists (the type of doctor that typically treats neurological autoimmune diseases) will not support stem cell transplants as a treatment for MS and other autoimmune diseases. (Fortunately, for those that have gone through the trails they were able to find neurologists who were both very supportive of their decision and encouraged them to pursue a stem cell transplant).
Speaking for my situation when I asked about this treatment was told and I quote "you are not seriously thinking about going to a third world, snake oil charming selling clinic who will cause more damage and upon your return I will be left to try and repair the damage they will cause you." I personally am in Canada so am trying to get to the Ottawa General Hospital last time I checked Canada was not a third world country and the team of specialist in Ottawa from what I have read and been told are not snake oil sales people left over from the turn of the century.
And to help clear up misconceptions many here have regarding what it means to have Universal Health Care in Canada we are require to have a referral to another province from both a medical doctor treating you and by your provincial health care provided e.g. MB Health needs to approve the cost to send me. Without both I can go but would risk having to pay for everything out of pocket. Not to mention that in Canada we do not have the freedom to see a specialist without being referred to by a GP (general practitioner doctor) first. So should I take this route on my own initiative I would also be required to move to Ontario find a GP then try and be referred to a specialist. Without following this protocol and going on my own MB Health has the right to refuse my claim sent back to them by another province's doctor who bills them. Not much different than a resident of the USA trying to deal with their insurance companies they are covered under.
Patients with such auto immune diseases can only speculate as to why their neurologists will not support stem cell transplants as a treatment option. Some of the theories that have been postulated are that their neurologists: (1) are uniformed or misinformed about the phenomenal success rates for stem cell transplant, (2) are relying on outdated clinical trial data, and/or (3) perhaps are financially influenced by the big pharmaceutical companies that make billions of dollars each year selling these extraordinarily expensive disease modifying drugs, & it is not in their best interest for people to go into remission from their MS (or other autoimmune diseases) as they will no longer require the services of a neurologist, and so they continue to provide their patients nasty and extraordinarily expensive disease modifying drugs, which might slow the disease progress a little, but will do nothing to halt the progression to disability, and also very often have very severe side effects. (Ps -- many neurologists also receive material amounts of money from these pharmaceutical companies that provide these disease modifying drugs for "speaking fees").
Unfortunately Stem Cell Transplants for MS & other autoimmune disorders remain only in clinical trials in Australia, UK, US & Canada. Unfortunately, it is also very difficult to meet the criteria inclusion for these trials, so many people are not able to receive treatment through these trials. Furthermore, it will also take many years until these trials are complete and stem cell transplants can be performed as a routine procedure that is covered by health insurance.
Stem cell transplants have been available as a treatment for MS and just a few other autoimmune diseases outside of a clinical trial setting in many other countries in the world (such as Germany, Israel, Russia, Mexico and other countries) with less restrictive inclusion criteria. Unfortunately, private health insurance will not cover stem cell transplants in these other countries.
Furthermore, here is a great description written by Sam Baar regarding the recent BBC program on stem cell transplant as a treatment for MS in the link below:
"This is a new 30 minute documentary from the BBC about Stem Cell Transplants for MS. This trial is going on in Chicago, the UK, and other locations. This is slightly different procedure than the Stem Cell Transplant I received in Denver for Stiff Person Syndrome a year and a half ago.
This is well worth watching if you have or know someone with MS or other autoimmune diseases. I expect that it will become FDA approved in the US as a procedure for MS rather than a trial in coming years.
MS is not the only autoimmune disease they are trying to cure using HSTC. Over 10 people have now received this for Stiff Person Syndrome like me and I hope more will! Autoimmune Neuropathy and Scleroderma are a few other autoimmune diseases they have done.
Unfortunately Stem Cell Transplants for MS & other autoimmune disorders remain only in clinical trials in Australia, UK, US & Canada. Unfortunately, it is also very difficult to meet the criteria inclusion for these trials, so many people are not able to receive treatment through these trials. Furthermore, it will also take many years until these trials are complete and stem cell transplants can be performed as a routine procedure that is covered by health insurance.
Stem cell transplants have been available as a treatment for MS and just a few other autoimmune diseases outside of a clinical trial setting in many other countries in the world (such as Germany, Israel, Russia, Mexico and other countries) with less restrictive inclusion criteria. Unfortunately, private health insurance will not cover stem cell transplants in these other countries.
Furthermore, here is a great description written by Sam Baar regarding the recent BBC program on stem cell transplant as a treatment for MS in the link below:
"This is a new 30 minute documentary from the BBC about Stem Cell Transplants for MS. This trial is going on in Chicago, the UK, and other locations. This is slightly different procedure than the Stem Cell Transplant I received in Denver for Stiff Person Syndrome a year and a half ago.
This is well worth watching if you have or know someone with MS or other autoimmune diseases. I expect that it will become FDA approved in the US as a procedure for MS rather than a trial in coming years.
MS is not the only autoimmune disease they are trying to cure using HSTC. Over 10 people have now received this for Stiff Person Syndrome like me and I hope more will! Autoimmune Neuropathy and Scleroderma are a few other autoimmune diseases they have done.
For many people that have become disabled from MS and other autoimmune diseases this is looking like a cure. It can stop the progress of the disease but some damage caused before may not reverse, some will!
This is a long procedure and is almost the same procedure you would have for blood cancers like leukemia.
Please do not confuse these academic FDA approved trials from the endless scams I see out there involving outpatient clinics that offer stem cell injections. These places are scamming people with little hope."
The same can be said for the trials that are being held in Canada
Here is the link to the BBC program:
Can You Stop My Multiple Sclerosis?http://www.dailymotion.com/video/x3n5jjl_can-you-st0p-my-mutiple-sclerosis-bbc-panorama-14th-dec-2015-720p_school
