Prof G, why do you talk with a forked tongue?
I am taking stick from many readers about my stance on HSCT. I implied in a comment yesterday that I would seriously consider it as a first-line treatment if I had MS, but in reality, I don’t offer or support HSCT for my own patients with MS as first-line therapy. Some readers are accusing me of double-standards. Should I walk the talk and put my head above the parapet or keep quiet? I have a potential solution; read on …..
The issues around HSCT are complex. HSCT is not a mainstream treatment for MS but will become so when more evidence emerges about its relative efficacy and safety when compared to other licensed DMTs. To address this question we will hopefully be starting a head-2-head trial of alemtuzumab vs. non-myeloablative HSCT in the near future.
At the moment HSCT is available to pwMS under the NHS, but not as first-line therapy. Why? It positioning as a 2nd- or 3rd-line therapy was made by consensus, albeit an HCP consensus, and the current opinion is to limit NHS access to HSCT to pwMS who have failed at least one high-efficacy DMT. I personally don’t agree with this. Provided pwMS are well informed and understands the risks of HSCT and are prepared to take the risks they should be able to have HSCT. There is no doubt that it will be cost-effective; as a one-off treatment, HSCT costs between £28,000 and £30,000. When you compare this to the annual and cumulative costs of some of the other DMTs HSCT becomes very appealing. The downside as always are the risks, and some would argue the risks are too great. Who should be taking the risks; the person with the disease or the HCP? I know where my allegiances lie.
When you have a disconnect between the needs, or implied needs, of the MS community, and the position of the NHS and/or the HCPs there is a potential solution for this problem called a Citizens’ jury. This is when a group of people from the general public (not people with MS or vested interests) decide policy on behalf of pwMS and HCPs; in other words, citizens decide if the NHS and/or HCPs are right to withhold an effective treatment from pwMS based on its costs and/or safety profile. At the moment most CPs feel HSCT is too risky to be a mainstream treatment for MS.
What I am proposing is that we set up a Citizens’ jury that looks into the question of whether or not HSCT should be available for pwMS, who have active MS, as a first-, second- or third-line therapy. If the jury says ‘yes’ then the NHS should create the necessary capacity to deal with the needs of the MS community. I think the NHS may support the results of a Citizens’ jury as it is win-win for them. Firstly, they will be viewed as being proactive in supporting MSers wishes and if they have to make HSCT widely available as a treatment for MS it will save the NHS money; potentially lots of money. From a person with MS’ perspective it will also be a win-win; i.e. (1) they will have the option of being treated with potentially the most effective DMT under the NHS and (2) they won’t have to cover the private expenses of having to travel abroad to have HSCT. Accessing HSCT under the NHS will also make it more equitable. What about the HCP or neurologist? Is it a win-win for them? Or a lose-lose for them?
Interestingly there was a very well written opinion piece in last week’s BMJ on the use of Citizens’ juries. It is worth a read.
Jacqui Wise. Citizens’ juries for health policy. BMJ 2017;357:j2650
…. What is a citizens’ jury?
….. Citizens’ juries (or community juries or citizens’ assemblies) aim to give ordinary people a role in democratic decision making. They usually consist of 12-20 randomly selected and demographically representative people, but some have had as many as 100. They explore difficult policy questions for government, charities, or think tanks. They differ from focus groups in that participants should be given reliable information and time to deliberate.
…. Malcolm Oswald, director of the Citizens’ Juries community interest company, a social enterprise supported by the University of Manchester, says, “Citizens deliberate among themselves, and, as they become better informed over several days, their views often change.”
…. They are particularly helpful for considering controversial and value-laden questions. For example, the Irish parliament formed a 99 member jury to advise elected representatives on ethical and political dilemmas including abortion, climate change, and provision for an ageing population.
…. What are their strengths?
Citizens’ juries involve the public in decision making, providing diverse experiences and perspectives, and the process can be thorough.
What do you think? Should we lobby the NHS to have a citizens’ jury on the issue of HSCT as 1st-line treatment for MS?