We need studies!!

Dear friends,

I know the pharmaceutical industry has few friends on this forum, so please don’t shoot me when I say I work in it. I’m a very, very minor cog in the machine, but I have tried to make the most of opportunities to speak to decision-makers about the possibility of doing research in CIDP with MS drugs (like Novartis’ fingolimod, sanofi-aventis’ teriflunomide and nerispirdine, and others listed in this article from 2009: [url]http://pubs.acs.org/cen/coverstory/87/8714cover.html)[/url].

If I’m understanding what the people I’ve spoken to have been saying correctly, there are a number of reasons why big pharma hesitates to do research in CIDP. One is, of course, return on investment. Even a small study costs a lot of money, and we CIDP sufferers are not a very big group. But the bigger problem is that ANY adverse event (in other words anything we think of as a side effect, even a headache or stomach ache) that occurs during a study of a drug in ANY population must be reported when the company files for approval. So if the CIDP population doesn’t tolerate the drug well, that could mess up the possibility of getting the drug approved for anyone, even patients with other illnesses who DO tolerate the drug well. And that’s a risk most companies would not be willing to take.

The good news is that many big pharma companies ARE more than willing to donate medicinal products to doctors for independent research in smaller populations (especially once the drug has been approved). So our best bet is in lobbying the doctors and foundations who study CIDP to plan studies using these MS drugs.

This group is not the only one we can lobby. There are organizations that study myelin, or inflammatory proceses, or who specialize in research on orphan diseases. Google them! Write to them. Ask your neurologist to think about doing a small study. Let’s work together to generate some interest in discovering whether drugs that work on inflammation and demyelination in the CNS also work on those issues in the PNS.

bbrooks