#ClinicSpeak: What’s in a name?

Gavin-Giovannoni-150x150Professor Gavin Giovannoni
Department of Neurology
Royal London Hospital

 I was a meeting this weekend and presented a talk in which I discussed MS being a length-dependent axonopathy. I made the case why progressive MS is modifiable and presented the positive results of the oral low dose methotrexate and ASCEND (natalizumab) trials and said that we had thrown the baby out with the bathwater. If we had interpreted the results of the oral low-dose methotrexate progressive trial from over 20 years ago correctly we would have had licensed therapies for progressive MS decades ago.

I was then told by one of the participants at the meeting that the parceling up of MS into relapsing and non-relapsing forms, and of chronic progressive MS into primary and secondary progressive MS, was driven by money. When the interferon trials started it was important to make MS an orphan disease, i.e. to having fewer than 200,000 patients classified as having the disease. Being an orphan disease allowed Pharma to access the market with one pivotal trial, gave them market exclusivity and allowed them to charge much more for their drugs. The consequences of this is that we have divided MS into being many diseases, which is to the detriment of people with MS. The consequences of this are not trivial. Being diagnosed as having MS is bad enough, but then being diagnosed as having secondary progressive disease is worse. The latter is interpreted by most people that their disease is not modifiable and that they are not eligible for DMTs. This is incorrect; remember #ThinkHand. In England, we are meant to stop DMTs in the SPMS phase. There are also many other reasons to avoid the diagnosis of SPMS.

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