The news came through a few weeks ago that the medicine I chose to tame my multiple sclerosis (MS) had been restricted by the European Medicine Agency.
Obviously, having had three courses of Lemtrada, I was concerned.
I read further.
22,000 of us have had the treatment. 39 strokes have been reported, often within hours of treatment. There are many other statistics I can’t make head nor tale of, as they are written up in medical lingo. In my experience, I had a horrendous flood of weakness after the first administration, then nothing. Just the usual tedium of being hooked up to a bag on a stick for several hours.
I was contacted by various people, worried that I hadn’t heard the news and I would drop dead fairly soon.
I didn’t die, but discovered that the overall risk of stroke after (Lemtrada) may not be statistically greater than stroke in the untreated multiple sclerosis population.’ When I decided to take Lemtrada, I knew the risk of Grave’s disease – which I had – leaving endocrinologists flummoxed as Lemtrada-induced Grave’s was a whole new ‘illness’.
So, I packed on weight. Gah. But, in the grand scheme of things, I would rather be fat (which I am) and happy than skinny and immobile. I took the risk and it didn’t work out. It happens.
The temporary guidance advises that Lemtrada is only used on new patients after they have previously tried two other Disease Modifying Therapies. That just doesn’t happen with Lemtrada – it is a first line defence, for those of us who experience a rapidly-cycling form of the illness. By the time a newly-diagnosed person has gone through two other treatments, they are no doubt not eligible for Lemtrada.
Within this whole confusing scenario, I wish the EMA had reached out and asked some us how Lemtrada had worked. But apparently their guidelines have not mentioned patient input.
So 22,000 of us have no voice.
This is completely unacceptable. Any form of medical restriction must involve the patients who have already taken the drug? Surely this is the first and foremost consideration?
It’s an oft-used phrase, ‘Nothing About Us, Without Us’,but when it comes to halting MS, we should be consulted.
Why wouldn’t we be?