Pharmaceutical companies, 
I thought it would be a good idea to document my efforts to access HSCT (or “stem cell transplant”) …
I am a member of an online group that supports MS-ers to access HSCT both in the UK and abroad. Through the group I heard of a haematologist in Liverpool who has treated a handful of MS patients. I managed to track him down and get in touch with his secretary, persuaded my GP to refer me and was allocated an appointment in August. I was in contact with a few other MS patients who were exploring this route and we were sharing information and ideas and generally providing moral support. We were all super excited to be taking out first steps towards beating MS.
Then, one day in July, we all received the bad news that Liverpool was not going to be taking on any new MS patients and our appointments were cancelled. This was devastating news – I really had thought that this was my best hope of getting HSCT in the UK.
Knowing that the Liverpool haematologist had initially started treating MS patients within existing budgets, I began to wonder if there were other haematologists who might also be doing this, or who might be willing to consider it. I decided to write to the head of haematology at my nearest large hospital and was surprised and delighted to receive a phone call from one their team a couple of weeks later.
He explained that they had already provided HSCT for a few MS patients who had been referred by the neurology team at the hospital where I see my neurologist! He told me that if my neurologist would refer me, they have a panel of haematologists and other experts, who would then decide whether I am likely to benefit from HSCT.
I don’t have another appointment until November, so have written a long and impassioned letter to my neurologist , asking for a referral and explaining why I think HSCT is right for me – I haven’t heard anything back from him yet.
Anyone reading this is likely to think this is beginning to sound quite hopeful. I’m trying to have faith that this will work out for me, but unfortunately I am aware that the neurology team I see are generally not very pro-HSCT. In fact this seems to be the view of many neurologist up and down the country and in other countries too. I’m still trying to fathom out the reasons behind this.
The drug companies make huge amounts of money from MS patients. DMT treatments cost £8 – 20,000 per year per patient. It is not in the interests of the drug companies for large numbers of MS patients to halt their disease with HSCT and no longer require these drugs. There is a relationship, which I don’t quite understand, between the drug companies and the medical profession, with each supporting the other and perpetuating the status quo. In addition, many MS patient advice charities receive funding from the same drug companies. The result of all this, is a culture of belief that drugs are the answer – most research is on more drugs, new drugs, better drugs, rather than looking at other means of tackling the disease.
Another possible issue is that HSCT, as a treatment for MS, was discovered by haematologists rather than neurologists. In fact, the positive impact of HSCT on MS was discovered by accident, when an MS patient had the the treatment for cancer and found that his MS was also put in remission.
Either way, this is the battle MS patients seeking HSCT currently face. If HSCT for MS was widely available, there are potentially massive savings for the NHS and for society. HSCT costs the NHS £30,000 per patient – the cost of just 3 years of the DMT I am about to start. Imagine this many times over and you can see the huge savings that could be made. This is before taking into account the additional medication that many MSers need and other costs such as physiotherapy, mobility aids and benefits when people are unable to work.
Some patients have been able to access HSCT privately in the UK at a cost of around £80,000, with many more now choosing to travel abroad for treatment costing £40-£60,000.
So this is the dilemma in which I now find myself! It could take months for me to reach a conclusion with my neurologist and the final answer is most likely to be no. Do I hang on for this before considering other options? This is a tough one. One thing MS patients don’t have is time. The disease is progressive and I have already had my worst decline since onset, over the last 12 months. If things continue at the same rate, I dread to think how I will be in another 12 months. HSCT halts progression of the disease, so it is important to have it as early as possible, before more permanent damage is caused to the central nervous system …”time is brain” as they say in the HSCT world! I have spoken online to many people who have had HSCT and no one ever regrets having it, the only regret expressed is not having it sooner.
I don’t have the funds to immediately set off and have HSCT abroad, but I have had lots of discussions with various people about whether we could raise this amount of money. Indeed, many MSers from the U.K. have already done so.
I am touched and delighted that my wonderful family and friends are totally behind me and willing to do what they can to help. I first talked about this with my children a couple of months ago and their reaction was immediately one of support and optimism …they are already coming up with some amazing fundraising ideas!
So, we will soon be launching my fundraising campaign and trying to raise the money for my treatment abroad. In the unlikely event I later find my neurologist will support my treatment locally, I will give all funds raised to AIMS, a new charity formed by MS HSCT patients to support others seeking treatment.
If anyone has any fundraising ideas, advice or experience, please get in touch.
Thanks once again for all your support.
