It has been a while since I have blogged, but hopefully this week will provide a chance to catch my breath and get things back on track. The CML Focus group this weekend was awesome. I flew into Baltimore on Friday and got to my hotel on Friday afternoon. That evening, ten of us with Chronic Myeloid Leukemia had an informal dinner with a few representatives from Bristol Myers Squibb and Otsuka (who partners with BMS on Sprycel). Because it was an informal process, it ended up starting out as a round table discussion of small talk, but once we settled in and delved further into discussion, I really got to hear some different stories and perspectives from those with CML. It’s always humbling to realize that I have been relatively lucky in regards to side effects and health issues. It could be the grace provided by all of the other nonsense I’ve had to struggle through.
The group of CML patients came from all over the U.S. (Oregon, Illinois, Michigan, Utah, Florida, Pennsylvania, Indiana, and two others I can’t remember). Jen was the only one in my age demographic. She is 25 and was newly diagnosed with CML in July of 2010. She is currently taking Gleevec, the med that was no longer effective for me after four years. She blogs about her CML also, which we talked about as being therapeutic and, at the same time, informative to those who want to follow our journey. Other members of the group were in their 40’s,50’s, and 60’s. One had failed on all three of the market drugs for Leukemia and had a bone marrow transplant that didn’t take. He is hoping to be a part of a clinical trial soon. On the other end, there was an older female survivor who has no evidence of cancer cells in her body. In the language of the masses, she is in “remission”, although nobody in the CML circles wants to suggest that the book is closed on her diagnosis. This kind of targeted treatment is “new”. Because of that, there isn’t a whole lot of documented evidence of people being blood cancer free for long periods of time, at least, not enough to hang up the “mission accomplished” banner. However, it’s definitely something to celebrate!
Friday night, I faced the dilemma of deciding whether or not to pay for wireless internet. After a wait at DFW airport (where there was an $9.95 option to pay for wi-fi) and an American Airlines flight to Md. (another $13.95 option to pay for wi-fi), I was done with the idea of non-free wi-fi from companies that are already making killer profits. However, that didn’t stop my brain from churning and the urge to pay for wi-fi at the hotel was almost irresistible. On the other shoulder, was the midget who encouraged me to forget the wi-fi and head out to the bay (which was next to our hotel). It was only 9pm after dinner and I had ample time to walk around and check things out if I wanted. Had we not been scheduled for breakfast at 7:30am Saturday morning, I may have been a little more tempted by the idea, but I ended up watching some Dateline show about a kid murdering his ex-gf and her *ahem* baby. Talk about the true definition of anti-climax.
After breakfast Saturday morning, we got into the meat and potatoes of why we were selected to be a part of the Focus Group put on by BMS. We sat in a large conference room and discussed various topics that would help BMS better serve their clientele. Further in, we broke up into smaller groups and tackled more specific issues. We had two sessions with smaller groups before we came back together and finalized the agenda for the day. Mix in a lunch and a bunch of relatively unhealthy snacks and it was quite an event. I hope to receive a picture that was taken of the group. The only regret I had was that the focus group wasn’t longer. I felt that we had a combined knowledge to at least stretch it out for another day. In fact, I was impressed by the knowledge that many of the “10” had about CML.
Soon after our meetings ended, me and two others were rushed to a car and escorted to the airport to catch our flights. I felt like a president who rolls his own suitcase and wears a backpack. I kept pretending the big, bald driver was secret service and that he was driving me to a place with free wi-fi. Alright, I was day dreaming.
On a side note, I’m sad that I didn’t get to see more of Baltimore. It looks like such a cool town. As I mentioned earlier, we were right on the harbor, not far from Camden Yards, where the Orioles play. Camden Yards is what originally made me want to visit Baltimore. It looks laid back, with big buildings behind it and the harbor in the distance. It’s so much different than the scene here in Dallas, much less Texas, where everything is spread out and typically isolated from everything else.
To sum the event up, I think we all took away the same experiences. All of us (CML survivors) were grateful for the opportunity to interact with each other and hopefully make lifelong connections. It’s cool to have heard the excitement in their voices when speaking of the same things that excited me. The representatives were warm, open, engaging, and caring. That was wonderful. In fact, the senior marketing director came up and talked to me about the insurance and financial issues that existed for me at the beginning of the year. She hadn’t heard of anything like that and she wanted me to know that she would help me with getting assistance. It was a conversation that ignited both optimism and sense of hope for the future. I told her that insurance policies are changing faster than pharmaceutical companies’ ability to create support systems for those changes. She agreed and said that she wanted me to know that BMS is currently in the process of developing a co-pay assistance program for patients using Sprycel. Great news!
I think the thing I most took away from the focus group this weekend is that I want to be a part of this kind of thing moving forward. I’m not sure to what capacity, but I think I’d be a welcomed asset to the field of Oncology. I was encouraged by some of the reps there to do this sort of thing. My old passion was politics/law and I was ready to pursue that. In fact, I was determined to. But the flavor of politics/law in this age makes me sick. I’ll always have a love affair with it, but that avenue is the inevitable poison I feel would destroy my happiness. What makes me happy is giving others hope, making other people’s lives better, and making others laugh.