Now I'm not saying that MS societies all around the world should lay out the red carpet to advocates and aimlessly fund every patient and institution in order to carry out procedures at random. But a distinct lack of support is extremely puzzling. I would at least expect the MS societies to point people in the right direction and fund some of the bonafide research studies that are happening.
And why should the MS societies point people in the right direction? The answer is simple. If a patient decides to ask about the option of HSCT and are rejected for information by what is considered to be the pinnacle patient body on this matter they can take matters into their own hands and might end up being treated by one of the shonky charlatans that sadly are around only to cash in on peoples misfortune. The very least that could be done is for that body to recommend the places that are doing it right.
They should also fund the research. I do believe it is a very long bow to draw to expect anyone to blindly believe a little anecdotal evidence and a few patient stories, especially if they are a professional body. But, anecdotal evidence and a few patient stories cannot be ignored and it is up to these professional bodies to explore and investigate NOT simply dismiss and ignore. The best way to investigate is by finding and funding doctors and facilities that are prepared to run official clinical trials to prove or disprove the treatment. So far these societies have failed to do this. MSA the largest MS charity in Australia has a budget of $33million. Surely they could use a small portion of this to support the trials?
So why have MS societies and organisations been so anti HSCT? I need to put in a few disclaimers here. Firstly, I don't know that all MS organisations are totally anti HSCT. I apologise to any that support the treatment. Secondly, the reasons I am about to list are only theories based on hearsay and (my phrase for the day) anecdotal evidence. One or all of the reasons might be wrong but it still does not change the fact that most MS societies are sadly lacking in their acceptance of HSCT.
Anyway here are my reasons/theories:-
- They are getting their advice from the wrong source. Although MS is a disease that has its symptoms manifest in a neurological way, it is a disease rooted in haematology as it is the immune system (which resides in our blood) causing the problem. MS is a disease that has traditionally been treated by neurologists and as a result most MS societies are guided by neurologists. Neurologists simply do not understand HSCT. It's a bit like getting an electrician to do your plumbing. Neurologists are ill informed about HSCT and we need to start listening to haematologists about this.
- They are entrenched deep in the pockets of the pharmaceutical companies. Big pharma loves charitable support groups. They are a great way for them to tap directly into the patient market and the association gives them and the drugs they are trying to pedal a high degree of credibility. To ensure their support these cashed up pharmaceutical companies give large charitable donations. Although HSCT does use drugs in quite a high proportion during the procedure these drugs are only used during the procedure and most of them are relatively cheap. Big pharma like patients who need to pop an expensive pill every day for the rest of their life. Currently, MS sufferers are a huge cash cow for them. If an MS charity supports HSCT, big pharma might pull their funding.
- MS societies are scared. After all, for many MS and autoimmune patients, HSCT has been the silver bullet that they have been looking for. Now it has not worked for everyone but HSCT is significant enough to make a massive impact on the MS community. Much of what they do would be be made redundant. But isn't that the way it should be? Service the organisation and patients so well you're no longer needed? I mean, if you are contracted to build a house you don't just leave it unfinished so you can keep the job forever. You finish your house and then find a new one to build. If am MS society "cured" MS, I believe that organisation and its staff would be in massive demand for another cause.
- Early failures. Yes, HSCT had been tried early without much success. For one reason or another they all failed but as Henry Ford said "Failure is only the opportunity to begin again, only this time more wisely". And some people have. Dr Burt in Chicago started off with rat studies and by the time I saw him had treated over 400 patients. We cannot live in the past. Just as a small sample group with a positive outcome does not prove a successful treatment a small sample group with a negative outcome does not disprove it. Alas, the memory of these failures may have a long memory.
Now the real answer may not lie here but I have faith in people and I believe that the people involved with MS charities sincerely are trying to do the right thing so I'm putting my faith in points 1 and 4. There are ways we can do this. The new organisation I am involved in is called Reset Australia. Our main aim at the moment is to raise the money to fund the stage 3 trials for all autoimmune diseases. If you want to do so you can here:-
Until next time, stay well:)