Wednesday, March 19, 2014


The CML meeting I attended in New Jersey concluded this past Saturday. It was a great meeting and not what I expected.

As a review, CML is the type of leukemia I have; CML stands for Chronic Myelogenous Leukemia. I take the chemo drug Gleevec for it, which is produced by Novartis Pharmaceutical Company.  I was diagnosed almost five years ago and have been on Gleevec since that time. I've had my ups and downs with both CML and the Gleevec side effects. While there has been talk of switching me to other CML drugs, I'm doing well enough to stay on Gleevec.

Several weeks ago, I was invited to a CML summit. It was for the intent of bringing CML bloggers and other social media types together for a meeting with the Pharmaceutical Company, Novartis. Not only does Novartis make Gleevec but it also makes another CML drug called Tasigna. Tasigna was listed with Novartis as the sponsor of this summit.

According to media reports, Novartis is trying to switch people from Gleevec to Tasigna. Why? Well, Gleevec's patent runs out next year while Tasigna's doesn't run out for years. Therefore, the price of Gleevec is expected to drop like a rock while the price of Tasigna will remain sky high. After reading this, I wasn't too interested in going to the summit. I expected that it would be a sales pitch for Tasigna, designed for us to then blog and spread the word. Yet, I was assured that the intent of the summit was to get input from us on how to better reach CML patients. I decided to go; I was skeptical but thought it was the venture.

Well, the first day of the summit was totally geared towards getting information from us. It seemed especially focused on how to get information into the hands of newly diagnosed CML patients. Once a person is diagnosed, the mind goes wild and there is a great hunt for information. CML is a rare disease and while there is more and more information becoming easily accessible on the internet, often times the information can be very misguided and unhelpful. So, there is a great need for accurate CML information for CML patients as well as resources for personal experiences with the disease and drug side effects. To my surprise, there was no Tasigna sales pitch on day one.

On day two there was a small blurb about Tasigna's effectiveness treating CML. Yet, it wasn't a sales pitch. It was information I had gleaned from press reports while previously researching Tasigna. Prior to coming to the summit, I read the results of three independent studies released in January.  Tasigna was shown to be more effective at putting CML patients into remission and keeping them there. The blurb at the meeting touched on similar data. However, the summit concluded without the Tasigna sales pitch I expected. So, I'd say that 99% of the time was devoted to CML patients and merely 1% to Tasigna.

I hope Novartis got some helpful information from us. While I'm not an advocate of big pharma, they are the makers of life saving drugs. It was refreshing to see their interest in communicating with the CML community to provide helpful information. While helping CML patients to better navigate their disease might help the Novartis brand, even the most conspiratorial anti-big pharma patient would have to admit that this information push is a great service to the CML community. While I still think the cancer drugs are way too expensive, Novartis deserves credit for trying to help us holistically, not just pharmalogically. What is Novartis getting out of this? Perhaps goodwill and brand recognition. Yet, CML patients will benefit even more. That seems like a fair exchange to me.

I mentioned that CML is a rare disease. After having had the disease for nearly five years, I met my first co-CML patient at this summit. In fact, I met a small room of them. To hear them relate their CML journeys was captivating. We all bonded rather quickly although from different parts of the country and from different backgrounds. We were bonded by the same diagnosis and treatment challenges.

The Novartis people along with their associated firms were outstanding. The people were very professional, personal, and they genuinely seemed to care about what we had to say. They solicited our input the whole time. Novartis said they will consider and implement some of our ideas, and then get the group back together in the fall. It will be interesting to see the moves they make in reaching out to the CML community and the interaction they will have with us through the process.

So, all-in-all it was a great summit. I met some great people and hopefully contributed to helping the CML community.

Sent from my iPad

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