HSCT for people with MS

It must have been about six months ago that I heard the term HSCT being seriously talked about at our Hayling Island MS group. I am certainly aware of some of the Disease Modifying Treatments (DMT’s) that are available for people with MS and I have watched the research with interest and curiosity over the years. In the last few years the number of wheelchair users within the MS community has lessened, which I’m convinced is down to the progression of research. Together with a regular exercise program and DMT’s a real difference is now being made.
When I was first diagnosed my Neurologist was into his research, I was sent to Cambridge to discuss the possibility of going on Campath 1H which was one of the first Disease Modifying Drugs (DMT’s). I underwent a two hour consultation and was sent on my merry way. My Neurologist called me back a couple of months later and told me how disappointed he was because the decision had been made that my MS was not ‘bad enough’ to warrant such an aggressive drug. I spent the next five years self injecting Beta Interferon.
Unfortunately my relapses kept happening and I was taken off the drug, at the same time more research had been carried out on Campath 1H. The decision had now been changed to prescribing the drug immediately the diagnosis of MS has been discovered.

I am so relieved that DMT’s are now issued automatically on patient agreement. There are about eighteen different drugs mainly taken by subcutaneous injection however there are some such as Tysabri which are delivered every four weeks intravenously. I believe recently one can be taken orally.

There have been years of conversation’s about Stem Cell Treatment but it is only in recent years that Hematopoietic Stem Cell Transplantation (HSCT) has been recognised by NICE (National Institute of Health and Care Excellence) although not all Healthcare Trusts are prepared to fund it. However there have been a handful of MS patient’s who have qualified and gone on to receive treatment under the NHS. Look at the following link https://youtu.be/G81LlcjN_qY

HSCT is available in the UK, if someone is unsuccessful in securing funding under the NHS it is possible to seek it privately although it will cost tens of thousands of pounds. Currently there are only two hospitals in the UK that offer the facility. It is certainly a gruelling process. https://youtu.be/imaEkjGZQew

There are two ladies who come to the Hayling Island Msers who have both been diagnosed in the last couple of years. Acceptance   onto the NHS for treatment requires the following - 

HSCT should be offered to people with relapsing MS who:

• have had at least 2 relapses (or 1 relapse with signs of new lesions on MRI) in the previous 12 months
• have not responded to 1 or more existing DMTs(note - the NHS criteria says 2 DMTs)
• have an EDSS of 5.5 or less
• are younger than 45
• have had MS for less than 10 years

The ladies will both need to fund it privately. It’s interesting that the NHS are charging in excess of £70,000 yet there are clinics abroad who have been providing the treatment for quite a number of years and it’s exactly the same as the UK. Although funding it privately it is still costing over £40,000. They have both been diagnosed within the last couple of years so are very suitable. I really do think it involves short term pain for a long term gain. I think the pain at the beginning is definitely emotional as they will be leaving their children at home for a month but they should see a major change in their movement take a look at the link below of a lady with MS who already has undergone the treatment.

https://youtu.be/G81LlcjN_qY

 

So what exactly is involved?  It is worth explaining by use of diagrams and pictures otherwise I would just start rambling on and none of it will make any sense.

 

I could be bitter and twisted and complain that why is there no treatment for me but the one thing my MS has brought me is a positive mental attitude. I am so pleased that MS research has moved on at such a fast rate since 23 years ago when I was first diagnosed and now. Just think in another 23 years it might even be eradicated.