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?
Not sure this post has relevance as we are now leaving the EU anyway.We need to think about MS on a national level now.
1. We haven't left yet.2. Decisions made in the EU on MS treatment may influence UK policy going forward.3. Making the situation better for pwMS no matter where they may live is a good thing.4. Insularity can erode excellence.
Totally agree with MD2, this has to be done on a large scale and the aim must be to provide best care early. The politicians have to see it as an investment in the future wellbeing/prevention of disability/lost utility/lost productivity.
We need to get faster diagnosis and then treatment. If I say progressive ms occurs within about 4 years so the window of opportunity is a short time. However the EU average of time to diagnosis is 8 years giving you 12 years to make an impact we have to do things quicker
PS this is a hypothetical but you get the point and yes the average time to diagnosis is 8 years -shockimg
I guess campaigns should start with GPs, but guess how many people go to a GP with some vague sensory symptoms … and don't have MS :-/. Tricky. But it has to start with GPs, because they have the power to send people to specialist care. ( I don't know how it is in the UK now, but here GP can send a patient to MRI with a relatively short waiting time, which is great because then a patient with lesions gets fast-tracked to neurologists).
The higher the safety level set for prescription drugs, the higher the cost of innovation will be. This also means that drugs tend to generally be safe (at least most of the risks are generally known) and efficacious. I am from the US, and our current government is looking for ways to reform the FDA to speed up drug approval. Here is what our current head of the FDA said in 2014:""To head the FDA, Trump is reportedly thinking of nominating venture capitalist Jim O'Neill who argued in 2014: "We should reform [the] FDA so there is approving drugs after their sponsors have demonstrated safety—and let people start using them, at their own risk. Let's prove efficacy after they've been legalized." Sounds good to me.""If we actually follow through with what is posted above, I believe it would be a disaster. Faith would be lost in the FDA, prescription drugs, and it could lead to a free for all with spiraling drug costs. It takes 12 years on average for drugs to be tested (research lab to the patient) and approved. That's a lot of R&D (average cost of developing a drug is somewhere around a billion dollars) with a very good chance that it will fail.Do you have any good ideas how to speed this process up without sacrificing safety or efficacy? Is it worth sacrificing some safety or efficacy if we can speed up drug development?