Concerns are often expressed about difficulties in getting approval or agreement of neurologists for patients with multiple sclerosis to have Autologous Hematopoietic Stem Cell Transplant (HSCT).
Reports have been published via social media of neurologists telling people with MS that the treatment would not benefit them as they have the ‘wrong type’ of MS – and others where the doctors do not know enough about HSCT and some who even refuse to look at accumulated evidence offered to them.
Why is this? Well, it’s sad but maybe the real problem is that the stem cell therapy is not neurology-led.
Then others, and here it is necessary to include many national MS charities, point out that HSCT is unproved and there is not sufficient scientific evidence that it will have any long-term benefit.
MS Australia says: “The current issue with this treatment is it is still in its very early stages. It is an intrusive procedure with many high-risk steps and includes high doses of chemotherapy which can knock people around considerably. Currently, there is not significant evidence to determine if the treatment is safe, or that identifies which people actually benefit from this treatment – as results are varied.
“The pleasing thing is large scale international studies are underway and there is one clinical trial currently running in Sydney that will help discover more information about HSCT.
“Our colleagues at MS Research Australia are also compiling a registry of people undertaking HSCT treatment in Australia so that we can map their experience with the treatment. To date this registry shows less than 40 people with MS have received bone marrow transplants to treat active, highly aggressive cases of MS. The procedure has been carried out at a number of sites, including sites in Perth and Sydney.
“Internationally, only a few hundred patients have been treated this way. However, the outcomes have still been mixed. There are some who have undertaken the treatment who have seen no benefit.”
MS Australia says that it ‘does not oppose’ the treatment but describes HSCT as ‘high-risk, unproven treatment’, that is currently only considered by some doctors and hospitals on a case-by-case basis for those who have an early, aggressive form of MS that is resistant to all other treatments.
In the UK, the MS Society says: “Although only trialled in a small number of people so far, HSCT has shown some success, particularly in aggressive forms of MS. We are funding a range of research projects, some of which are co-funded with the UK Stem Cell Foundation.”
In the USA, the National MS Society says: “At present, there are no approved stem cell therapies for MS. Stem cell therapy is in the experimental stage, and it’s important for people to have the best available information to understand this exciting area of research and make decisions related to this complex issue.
It adds that HSCT is being investigated in Canada, the United States, Europe and elsewhere, including an international clinical trial of this procedure being led by Dr. Richard Burt of Northwestern University in Chicago.
Initial results from the five-year multi-centre HALT-MS (High-Dose Immunosuppression and Autologous Transplantation for Multiple Sclerosis) trial suggest that autologous hematopoietic stem cell transplantation may be a highly effective treatment for patients with aggressive relapsing-remitting MS.
However, that goes against the experience of those with progressive forms of MS who report positive results following HSCT in Russia, Mexico, Israel, the Philippines, and other places with reputable clinics offering the treatment. You only have to look at the various HSCT groups on Facebook to see that for yourself.
We also need to remember that HSCT is not a cure, nor is it claimed as one. It is used to stop progression of the illness, so it gets no worse – although, in some cases, remarkable improvements have been found.
With neurologists seeming to be reluctant to support or recommend this therapy, it is more important than ever for people with MS to remember that they, not neurologists, have the final say about treatments that they receive.