Using HSCT to treat people living with multiple sclerosis may not yet be proven in the long-term, as is often pointed out by various national MS charities and some health professionals, but it certainly does have a whole lot of people saying how good it has been for them.
What’s more, and this is even more encouraging, whilst some in the medical profession only welcome the therapy cautiously and only for the treatment of the relapsing remitting type of our illness (RRMS), it actually seems pretty good for progressive MS too.
Fair enough, stories about great results are more anecdotal than from properly established clinical trials, but surely it should be the results that count. Results of real therapy of real patients is, to my mind, more important than ‘trials’.
I have nothing but admiration for people choosing to head for Russia, Mexico or wherever for their treatment – at huge costs to themselves. They have both courage and determination; courage to travel often long distances for what is still seen as a pioneering therapy – and determination to make life better for themselves and their families by effectively halting MS in its tracks. And that is besides their determination to find or raise the thousands of pounds, dollars or whatever, to pay for it. After all, HSCT does not come cheap.
Being at the cutting edge of a new treatment is going to require significant investment but I cannot help but wonder why the various health services around the world have not, as yet, seemed to grasp what is going on.
HSCT is not a cure for MS but the signs so far are that, while it does not repair damage already done to the nervous system, it is largely successful in halting progression. Furthermore, in a few cases, an actual improvement has been seen.
Now, I know that what I am going to say next will be a bit controversial with some parts of the medical establishment, such as neurologists, and downright opposed by the drug companies that are making so much money from sales of the MS drugs they produce. Nevertheless, it is a point of view that I feel must be expressed.
I believe that the national health services and organisations should stop hiding behind words like ‘unproved’ and grasp the nettle. They should accept, as evidence, what is being reported by people who have had the therapy and offer it to MS patients in their own countries.
In the long-term, it would be great to see HSCT being available globally but, until then, the cost of treatment in one of the existing clinics should be borne by the health services (or medical insurance companies) in the patients’ countries.
After all, the cost of the one-off Autologous Hematopoietic Stem Cell Transplant therapy is significantly less than the ongoing cost of MS drugs.