The following is my presentation that I gave yesterday at the European Parliament.
Attending the European Parliament was quite an experience. It is large and, as you would expect, bureaucratic. Getting into the building took over half an hour; mainly due to security checks. The meeting was hosted by Cristian Busoi, an MEP from Romania. If I am not mistaken he was the only MEP in the room. Most of the attendees were MS and Neurology stakeholders, other lobbyists based in Brussels and several Pharma representatives. The meeting at least raised awareness about the problems the EU faces with regard to MS; in particular the increasing incidence and prevalence of MS, the cost of the disease for EU countries (direct medical and indirect societal costs) and the problem with wide variances across Europe in how MS is diagnosed and managed.
The highlight for me was Gisela Kobelt’s presentation on the economic impact of MS and how closely it it is linked to disability. I think that we both made a strong case for ‘early effective treatment in MS’. The good news is our policy document ‘Brain Health: Time Matters in Multiple Sclerosis’ got airtime and at least one MEP has read it and endorsed its findings.
A lot of the meeting was dedicated to MS registers and the need for a pan-EU MS register. Fortunately, the is about to happen with the EMSP facilitating the creation of just such a register. Although a lot was made about the value of registers we missed a trick about some of the advantages of why a pan-EU register would be of benefit to EU member countries. Surely it could be used for monitoring MS outcomes that could then be used by payers for value-based pricing of DMTs? If the DMT does not deliver the promised outcome the member country could demand a rebate from the company? What about safety and using the register for pharmacovigilance studies? Another use would be to use the register for pragmatic trials; this would make research cheaper and easier to do. What about using it for audit and assessing quality of care? This data could be used to iron-out variances in practice across Europe. Including PROMS in the register would provide an opportunity for pwMS to engage with monitoring their own disease. The register could then be used to help pwMS self-manage their MS.
Another plus for me, attending the meeting, was a discussion I had with Gisela Kobelt about innovation. I don’t get speak to health economists very often so when you sit next to one of the leading health economists in MS it is a wonderful opportunity to ask questions. The question we debated was: ‘Why does innovation in healthcare cost so much?’. We discussed many points around this and when I get a moment I will write a separate blog post summarising the points we discussed. In the interim if you have an opinion on this topic please feel free to comment. Do you agree that the high cost of healthcare innovation is a problem?