Saturday, 2 February 2013

The power of the Pen, Good news for the Brave MSers Pioneering MS drugs

Company restores access to multiple sclerosis drug after pressure from neurologists BMJ 2013; 346 doi: (Published 1 February 2013

A drug company has bowed to pressure and restored some access to a drug that it had previously withdrawn. The company, Genzyme, a subsidiary of the multinational pharmaceutical giant Sanofi, caused outrage among neurologists last year after it withdrew off-label use of its drug alemtuzumab for patients with multiple sclerosis. After protests from doctors, reports in the BMJ, Lancet, and national media, and an editorial in the BMJ, the company has now agreed to restore a limited supply of the drug to enable patients with multiple sclerosis who had already started a course to complete their treatment.

In a letter to the NHS this week Isabelle Izzard, principal pharmacist at the Department of Health for England, said that Genzyme had agreed to supply 201 vials of the drug for UK patients with multiple sclerosis. However, the drug would not be available to new patients and would be restricted to a small group of half a dozen neurologists who already had patients in treatment at the time of the withdrawal last September......

Before the ink had time to dry, following the letter to by Prof G and Big Al posted in the BMJ last week, a deal has been leaked to BMJ is to provide some MSers access to the drug. The drug would not be available to new patients and would be restricted to a small group of neurologists, who already had patients in treatment at the time of the withdrawal last September. So it is good news for them and it is nice that the company saw some sense. 

MSers on trials risk a lot to potentially gain, but they sometimes lose, but they are the people that allow drugs to become licenced so that companies can make money. These people need proper provision for access to drugs should they need retreating. It is great news some people can continue a treatment which obviously does some good. However the question is who are the few neuros and what about the MSers who got the drug off-label treated by other neuros that are not on the select list? Will they get access, maybe after referral to one of the few neuros who will have access to the drug. At least this way the consistency of monitoring can be ensured.  The company got the cash for the cost of the drug for the off-label use, should they not stick by the MSer until Lemtrada gets approved?

Who's the grass?........


  1. Allowing patients already on alemtuzmumab to continue is the absolute minimum that they just have to do, and this must include those who got it off-label.

    What does 'Who's the grass?' mean in this context?

  2. This story was leaked. A grass is a person that leaks the story i a snitch whistleblower and informer

  3. slang meaning is an informer for the police

  4. A tip of the hat is due to Prof G et al for mobilising on this. Hopefully the blog may have had some influence too. Well done to all concerned. Now lets hope Lemtrada gets a licence and is available at a REASONABLE cost so that many more MSers can benefit.


Please note that all comments are moderated and any personal or marketing-related submissions will not be shown.