Pharmaceutical giant Sanofi withdraws (campath I think) existing treatment to boost profits with rebranded Lemtrada. A pharmaceutical company stands accused of putting profit before patients after withdrawing a drug used in the treatment of a chronic debilitating disease — ahead of relaunching it at a price predicted to be up to 20 times higher. Three of Britain's leading neurologists have written to the Health Secretary, Jeremy Hunt, to protest at Genzyme, part of the multinational drug company Sanofi, halting supplies of the drug alemtuzumab for multiple sclerosis. The drug is currently licensed for the treatment of leukaemia. But it has been known for 20 years also to be effective in MS patients suffering from an aggressive form of the disease. Neurologists have used the drug in these patients "off label" — prescribing it on their own initiative even though it was not licensed for multiple sclerosis — following encouraging results from a large placebo-controlled trial published in the New England Journal of Medicine in 1998. Alemtuzumab, which is given in two courses a year apart, costs markedly less than other drugs for multiple sclerosis to which it is thought to be superior — around £2,500. Genzyme has now applied for a licence for the drug in multiple sclerosis to regulators in Europe and the US and is expected to relaunch it under the trade name, Lemtrada, at what could be many times its current price. In the meantime the company has withdrawn the drug from MS patients' off-label treatment, pending the granting of the licence, on the grounds that "any adverse event outside a clinical trial "026 may complicate the regulatory process". In the neurologists' letter to the Health Secretary, professors Neil Scolding of the University of Bristol, Neil Robertson of the University Hospital of Wales and John Zajicek of the University of Plymouth say that Genzyme's decision has "serious implications for vulnerable UK patients with MS". They say patients who have already started treatment will "not be able to get their vital second course", and new patients may "miss their window of therapeutic opportunity" putting them at risk of "progressive, severe disability". When licensed, they say, the drug's price is expected to be "15 to 20 times greater", and its withdrawal sets an "inappropriate precedent". They add: "It shows little regard for patients whose opportunity to alter the course of their disease is time-limited, and may represent an over-enthusiastic attempt by the parent company to profit from the current situation." Professor Zajicek said he had personally treated about 150 patients with the drug, and 400 to 500 had received it across the UK. "Many of us think it is the best drug for patients with aggressive MS in the early stages of the disease. It's the greedy behaviour of the drug company that upsets me. They are just trying to rebrand it and put the price up. It is morally corrupt." A spokesperson for Genzyme said: "Our goal is to ensure that Lemtrada is approved by regulatory authorities and made available to multiple sclerosis patients as quickly as possible. Until approved risk-management programmes are established, the use of Lemtrada for MS should occur only in clinical trials.
Well that was quick and easy no trouble at all . I guess I have been lucky over the years in that I have never been afraid of needles so I never dreaded shot night , also I never have had a really hard time with side effects.
Suzanne have you ever found that you woke up a few hours after the shot and could not get back to sleep but otherwise felt fine. This started with me about two years ago (I am now ten years on Avonex). It is mildly annoying but not something that causes fatigue or any other sort of disability, just curious and thought I would ask.
Based on last night I recomend the pen to anyone on Avonex
Yes and yes allthough you have to have a training session on how to use it. I done mine in neuro's office in five minutes so no big deal on that. My insurance covered it with same Co-pay. My first one tonight so will let you know tomorrow.
I mis-spelt that by "pushing through" I mean trying to keep going when we know we should take a break or have a nap. We all do it once in awhile but it can cause promblems in the long run. I know this will not be easy with a three year old in the family.
As to treatments the more establised ones are what we call the CRAB's .All are injections so the can seem scary. Copoxane Rebif Avonex and Betaseron the have been around for fifteen plus years and there track record is pretty well establised .
Of these Copaxone is the best tolerated with fewest side effects but it an every day injection under the skin.
Rebif and Betaseron are from a class of drug called an interferon each is an every other day injection under the skin.
Avonex is another interferon injected once a week into a muscle so there is a longer needle needed allthough the have a new system just launched which hopefully will be easier to handle.
All the interferons come with side effects including flu like symptoms after the shot and severe depression and possibly liver damge so the have to be monitered very carefully. Many people here say the cannot give up a day of the week to the flu like symptoms when the have a small child.
Avonex is the one I am on since my diagnosis ten years ago and I have been very lucky in that I have no promblems with side effects.
There is a once a month infusion called Tysabri and there has been an pill called Gilenya released recently with more to come . I do not know much about these so hopefully your neuro or someone else on here will explain more.
Remember this choice is yours to make or if you choose not to treat at all and do not let anyone bully you into taking a treatment that does not suit you.
Welcome to our little group but sorry you need to be here. Your Ha-Ha moment is not unusual after diagnosis. A lot of people actually feel relieve because the diagnostic process can take so long.
The most important thing right now is to find a neuro or MS care center that will work with you on a second opinion and then on a treatment plan .Once that has been establised then you can take a deep breath and assess where you are.
As you say yourself take it day by day for now, do not be afraid to ask for help as "pushing trough" can cause more promblems in the long run.
Come back and let us know how you are doing fell free to ask,vent tell a funny story or joke.