It's been over 20 years since the first MS drugs were rolled out. Before that nothing was offered if you were diagnosed with MS.
In 1980 the neurologist who diagnosed my MS advised me to learn to live with it. I went on for years and usually had no neurologist. I had lots of falls and infections but the neuro had also said, "I've never known a case of MS to get better." So what was there to do but just treat the infections or injuries and move on.
But many years later my primary care doctor thought I might benefit from Copaxone and referred me to a neurologist. As it turned out I chose Avonex at first, but after 3 years of it, I changed to Copaxone.
By this time I had discovered the Internet and MS forums and found many people facing the same choices: Diagnosed with MS, do I opt for one of these MS drugs, and if so, which one?
I noticed that many were switching from one MS drug to another as time went on, and some were totally opposed to MS drugs from the outset. Others opposed them after a bad experience or two.
But everyone seemed to be aware that the drug companies were energetically promoting these drugs--so energetically that we often had invitations to special events, complete with a free dinner, where presentations about a certain drug were provided, often by a local neurologist. We were aware that our neurologists were being offered honoraria for their appearances and invited to be consultants for the drug companies.
We ourselves were given freebies if we went on one of the drugs. A special placemat, ballpoint pens, a jar opener, a shoulder bag, and on and on. And of course lots of gelpacks that could be heated or chilled, for our comfort before and after doing the self-injecting we would have to do, daily or weekly, without fail, for the rest of our lives. And our lives could stretch out for many decades.
Take every MS patient diagnosed at, say, 30, and that person starts on an MS drug upon being diagnosed. The drug company is hoping that that patient will remain on that drug for the next 50 or 60 years.
That's a lot of years.
The drugs may be as costly as they are partly because of this intensive promotional campaign on the part of Biogen, Teva, and the other drug companies. Apparently Biogen is the one that was targeted with a lawsuit because some of its employees, who were the very ones who would know what was going on, made an issue of the cozy relationship between neurologists and drug companies.
The drug companies have been faced with a tough job: how to market a drug that a patient would have to self-administer (often) even self-injecting can involve a steep learning curve, particularly if the person with MS has impaired dexterity and eyesight and finds manipulating a syringe carefully enough to administer a medicine properly to be a challenge? How to market a drug that is so costly as to be almost incredible, and how to market a drug that won't make anyone feel any better and won't cure the disease it is targeting?
It just might slow down the progress of the disease. In fact, the MS drugs by now have stood the test of time and seem to be slowing down the progress of the disease in some people because the statistics are showing that they do.
But that slowed progress will happen only in some cases. Exactly what percentage isn't known. Exactly how much slowing down occurs isn't known.
It must have been a very tough sell but Biogen and other drug companies pulled it off. They're doing very well. People with MS still have MS. It might be hitting some of us less hard than it otherwise would have. At least we can hope so.
And it took over 10 years for this case against Biogen to reach a settlement.
But hey! We have these great MS drugs, and even though they're not perfect, they're something the neurologists can offer us. Before they had nothing.
Progress is very very slow when it comes to a disease like MS.