It was a dark and stormy night. The hospital corridors were abandoned and echoing with every step. There was a suspicious lack of signage directing individuals to the basement seminar. I had no idea that I had registered for an evening of neurologists pushing Tysabri onto a room full of medicare patients.
My parents assured me that although they’ve gone to many MS events they had never been to a spectacle like this before.
Last night I trekked down to the basement of a hospital branch one county away to attend an MS event my parents had alerted me to called Dialogue of Hope and Health. I can’t deny that I was hoping that the “hope” in the title of the event referred to the new oral medications soon to be available (at least in other countries) or perhaps stem cell developments. It turned out to be something between a sales pitch and damage control conducted by a local neurologist and some Tysabri sales reps.
If you have been diagnosed fairly recently, take a look at our Guide To Multiple Sclerosis for a list of available medications.
In my opinion, it is a questionable ethical choice for a neurologist to invite his patients to a deceptively named seminar to be pitched to by a drug rep with only negative statements about alternatives and without providing a forum for the other MS DMD manufacturers to respond to allegations leveraged by the doctor and rep or to the questions posed by the attendees.
Tysabri is a relatively new drug (initially approved by the FDA in 2006), and my neurologist has only a few patients on it. This neurologist does not specialize in MS but still drew what appeared to be at least 40 Medicare patients all on Tysabri out on a Wednesday night to wander around a hospital until they found the basement conference room. He said he organized the meeting (I wasn’t aware he had organized it until it had started) to eliminate some questions floating around. In other words, to get his Medicare patients to shut up about taking “medication holidays” and switching from Tysabri.
When we showed up, we were asked to fill out additional paperwork for government records. This raises another question – did taxpayer money go to fund this virtual sales pitch? It seems as though this doctor just got Tysabri to throw together an event for all his medicare patients so he could get them in a room together and tell them there is no hope on any drug other than Tysabri.
The meeting began with a disclaimer that no one can tell you what drug to take, but the message that followed was very different. Essentially, this neurologist and the Tysabri sales reps informed the room that interferons and betaseron are “bad” and “don’t work.” That the new oral drugs (Cladribine and Fingolimod) kill you with cancer and infections. That marijuana has no effect on MS symptoms – people just like to get high. We were all but promised that people never die from PML and that MS patients no longer have any attacks once they’re on Tysabri.
Following the doctor/patient bullying session, the sales rep came over to give me his expert medical advice. The whole event left me seething. If I decide to take the risk and go on Tysabri it isn’t going to be the result of the 3 questionable men running the show last night. PML is a scary thing and no one should be mocked for fearing it. The latest statistics are that about 1/4 of people on Tysabri who develop PML will die from it, and the rest will be left with permanent disability ranging from mild to the need for life support. 1/1000 Tysabri users will develop PML and your chance of developing it increases with use (hence the interest in a medication holiday).
None of our options for Disease Modifying Drugs are great. They all have drawbacks. Rebif is only supposed to reduce my relapses by 30% and no one can say what the last 18 months would have been like if I had not been on it. Because Tysabri can be administered via infusion in a neurologist’s office, a patient taking a “medication holiday” would cause a huge dip in revenue for the doctor as well as for Biogen Idec and Elan Pharmaceuticals. I have less options for neurologists than if I lived in a more metropolitan area, but I now know another doctor that has made it to my never-in-a-million-years list.
I understand that pharmaceutical companies are businesses expecting to make money. Sometimes they fail spectacularly in creating a drug and future drug prices make up for it. Sometimes they are spectacularly successful, but it is still incredibly expensive to develop the drug and prices are affected by that. Even so, when Rebif representatives call me they want to know how my health is. They don’t want me to die from liver failure just so that they can sell more Rebif.
I have nothing against Tysabri. I may even have to switch to it soon.
I have been on Rebif for over a year, but I’ve had several attacks (although I don’t think I’ve had any new lesions). According to the sales reps there, Tysabri doesn’t help prevent MS attacks following viral infections, although he was adamant that if I had an MS attack for any reason on Rebif that my MS is uncontrolled and I should switch to Tysabri immediately. With Rebif, sometimes the injection pain is terrible and sometimes I hardly feel it. The real issue at hand is liver function. I’m borderline and monitoring this is becoming increasingly difficult.
As of 2010 my insurance company, has decided that blood tests ordered by a neurologist do not follow normal coverage guidelines and are not covered. Therefore, one simple blood test for liver function cost me nearly $400. I’m not sure I know anyone who is willing to spend $1600 a year on blood tests if they can avoid it. There were years in college when that’s all I spent on rent!
If my liver function deteriorates and I decide to drop another $400 to find this out, then my options are Copaxone and Tysabri. After last night, I’m leaning toward Copaxone, daily injections and all.
Do you take Tysabri? What have your experiences been with the drug? Are you concerned about PML? Did you feel pressured by your neurologist into taking a specific treatment?