The PR firm representing Genzyme Sanofi
and the launch of their newest MS drug, contacted bloggers with the offer to speak with one of their neurologists about Lemtrada, the trade name for alemtuzamab.Â Â Never one to turn down the opportunity to speak one on one with these specialists, I was happy to accept their offer and was connected with Dr. Ann Bass
, from the Neurology Center of San Antonio.Â Â Fortunately they allotted 30 minutes to talk by phone and we used every bit of that and could have used more.Â There is a lot to talk about - this new MS treatment option has the MS community buzzing with excitement about the potential.
immediately pointed out something I had not caught â€"Lemtrada is approved for relapsing forms of MS and that is not limited to just Relapsing Remitting MS, and it could include Secondary progressive MS. She said there are no plans for a study for its use in primary progressive MS (PPMS), and cited an older study that showed the drug, alemtuzumab showed no benefit in PPMS.Â Â I asked if there might be doctors who would try to use it off label for PPMS and she said that would be highly unlikely because of all the serious warnings that accompany this drug, and the extreme exposure to liability a doctor would face using it in an unapproved manner.
said in the studies, 80% of the people were fine with treatment for just 2 yrs.Â 20% needed an additional round for the third year and 10 % needed treatment for the fourth year.Â Â Â The need for additional treatments is based on finding two indications that additional treatment is needed, and could include clinical evidence, EDSS changes, or new lesions and enhancing lesions on MRI exam.
It is no surprise that Dr. Bass
said there is a neurologist online community that regularly talks and this is a hotly debated question, because no one really knows that answer.Â Their big debate is while the Â lymphocytes were repopulating would there be a benefit to be on something else?
Dr. Bass says Lemtrada will be given by IV, the same as Campath, and the times will be similar.Â A treatment of Lemtrada will involve the infusion to take place over 4-6 hours and that an additional 2 hours of observation, making it at least an eight hour day.Â Because of the side effects of this drug which is a potent chemotherapy agent, Â they recommend pretreating the person with other pharmaceutical to help counteract the side effects.
Thanks to a promotional outreach Â from a marketing firm to bloggers to talk about this program, I was able to speak by phone with Dr. Ann Bass, the director of The Neurology Center of San Antonio and the lead neurologist for this program.
Lights, Camera, Take Action on MS will be comprised of Â three live events held on different dates in Chicago, Orlando and Houston.Â The Chicago and Orlando events will also be available to view on the web and taped for on demand viewing at their website.Â Each of these events will last about two hours, and have a panel comprised of Stowe, Bass
, other as yet unspecified medical lifestyle support people, and their patient ambassadors.Â Â I wonâ€™t be anywhere near any of these locations to attend the live program and will have to settle for the rerun.
The panel members will talk about their drug, of course, because that is required by the FDA laws governing contact with potential users of their drug.Â But Bass says the program will focus on more than just the Genzyme products and include mini-seminars that will offer information on ways to gain better health and be more active as people with MS.Â She
is particularly excited to share the perspective Stowe will add to the caregiversâ€™ side of this disease; this is a special group of people that does so much but continues to be in the background with little support or resources