Tysabri : A picture is worth $6900!

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 branch of the AnMed hospital in Anderson, SC 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 a Tysabri sales rep.

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, and I doubt my neurologist has more than 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 put together a thing 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 started with him saying no one can tell you what drug to take, but the message that followed was very different. Essentially, the message was that interferons and betaseron are bad and don’t work and that the new oral drugs (Cladribine and Fingolimod) kill you with cancer and infections. That marijuana has no effect on MS symptoms and that people just like to get high. We were all but promised that people don’t 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 statistics presented last night (if you can trust them) are that only about 1/4 of people on Tysabri who develop PML will die from it, but 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.

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. 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 it’s not controlled and I should switch to Tysabri. 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, Cigna, has decided that blood tests ordered by a neurologist do not follow normal coverage guidelines and must come out of my deductible. 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 shell out 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.

Interferon injections are more than unpleasant.

I am so glad I make a habit of reading BBC News daily as US news agencies frequently skim over important things in favor of the shocking or violent. Today they published a story about new oral multiple sclerosis treatments that are likely to be available in England in 2011. As someone whose liver does not particularly like Interferon and is afraid of the risk of death from Tysabri infusions this might be a godsend. Since interferons are not available as generics (they contain living organisms and are exempt from status that would let them ever become generic) this could open inexpensive and more successful treatment options to a host of people who have no option but to live with the effects of the disease untreated. The full article and link to it are pasted below, but here is the basic information you want:

• The oral drugs in question are Fingolimod and Cladribine
• The drugs are considerably more effective at reducing relapses than current available treatments
• The drugs may increase your chances of herpes and cancer

Trials spark hope of pill for MS

Oral drugs to treat multiple sclerosis could become available in 2011 after promising results in two trials.

Drug licences have been applied for and the MS Society said it was “great news” for people with MS – current treatments involve injections or infusions.

The trials of the drugs each involved 1,000 people in over 18 countries, the New England Journal of Medicine says.

Cladribine and Fingolimod, which come as tablets, cut relapse rates by 50-60% over two years compared with placebos.

Fingolimod was also tested against the widely used injection, beta interferon 1a. The trial showed the new drug was twice as effective in reducing the number of relapses over a year.

“ The evidence is now there and we will be working with the relevant authorities to make sure those who will benefit can get access ”

- Dr Doug Brown, Biomedical Research Manager at the MS Society