A couple of weeks ago, I received a flyer in the mail from Bristol Myers Squibb, the pharmaceutical company that makes my Leukemia medicine called Sprycel. Sprycel is a relatively new market drug that has only been available for a couple of years. The flyer notified CML (Chronic Myeloid Leukemia) patients of an upcoming Focus Group that BMS is holding in Baltimore, Md. on Aug 18-19. Further information was available through email or telephone for those who were interested in being further screened. I emailed right away. This was something I wanted to be a part of.
Hi, my name is Justin Ozuna and I just received a letter from Bristol Myers Squibb about the Focus Group on March 4-5. Will you please give me some more information to see if I qualify, or instruct me as to how I can move forward with the screening process. If you need any information from me, please feel free to email me back at this address or call my personal phone at (left my number) . I really feel that I would be a strong candidate to share my struggles and story as a mid to late-twenties patient living with CML. Thank you very much.
I got an immediate, automated response…telling me that the representative I was attempting to contact was out of the office for the next day. Not what I was hoping for. I figured that I would give it a day before trying the alternate method, actually talking on the phone.
In the back of my mind, I assumed that there was no way this would happen for me. It seemed too large, too corporate. I am just a guy, a number, in a world of diseases that number the thousands. I am 1 in an estimated 260,000 patients living with, or in remission from one of four types of Leukemia, with an estimated 43,000 Americans diagnosed in 2010. Of course, the number of CML patients is considerably smaller, but as you could imagine, the odds were against me. A couple of days later, I received a response.
Justin,Thanks very much for your note. In talking with other patients, we heard the original date was not convenient and have changed it to March 18-19, still in Baltimore. If that date works for you as well, I’d like to talk with you by phone to provide additional details.Looking forward to hearing from you.
Thirty minutes after I received this email, I called and talked with Linda, a representative from the Phoenix group. The Phoenix group is a third party that Bristol Myers Squibb brought in to coordinate the travel arrangements and information associated with this conference. BMS wanted to respect the confidentiality of the patients and didn’t want anyone to feel uneasy about the process.
I talked with Linda for about forty five minutes and it was a really awesome conversation. I told her my story from the beginning. I told her how scared I was at first, how I internalized everything so that my family wouldn’t worry about me and my situation, how immaturity and a lack of understanding led to inconsistent treatment, how the costs (even though relatively low compared to now) were compounded by a low paying job, how I was eventually seen as a non-compliant patient, how I was turned down from transferring my treatment to Baylor Medical Center after I moved to Dallas, how I was told I had a rare mutation that would lead me into clinical trials, how I eventually ended up on Sprycel, and how a renewed dedication to treatment goals were stunted by my inability to afford my medicine through insurance without a co-pay system. It was the first time I realized how passionate I was and how desperate I wanted to be an educator to a pharmaceutical company that could make a difference to someone like me in the future. The more I talked, the more I knew I wanted to be a part of this. I believe that Linda could hear the same thing.
The purpose of the Focus Group is for Bristol Myers Squibb to find out how they can serve their CML patients better. They want to know, firsthand, the stories of those from all different stages of CML. One of the most common issues for people with CML is compliance with medication. They want to know why and how they can help. And one of the ways they have chosen to gather this information is through the people who have been affected. They are flying twelve people to Baltimore, Md. to meet with BMS representatives, doctors, and members of the Phoenix Group. They are paying for hotels, meals, and are even paying patients for their time.
I told Linda of my desire to write the benefits coordinator at our company (Oncor), Aetna, and whoever else I needed to so that they’d hear a voice of how ridiculously difficult it is for those suffering from chronic illnesses to afford the medication they require. Even if it doesn’t change anything in the future, I’d rather them make the same benefit package decision next year knowing that those decisions to save money affect the lives of those who don’t have that option. The worst case scenario being that they make the same decision next year not knowing anything at all. I told Linda that BMS needs to have this information as well, because I was told by them that I didn’t qualify for anything other than a co-pay assistance card (which gave me $100 off of a $3,057 out of pocket cost for one prescription) because I had insurance. She told me that this is the information BMS is paying for and wanted to know about. She said that most people aren’t as open and honest as I am about everything and they were looking for people like that. I started to think I had a chance of being picked.
Towards the end of the conversation, she asked for my address to send me further information. Without getting too excited, I gave it to her and began asking about the selection process. She told me that twelve people, from all different ages and stages of CML would be chosen to represent patients across the United States. She said that she had talked to hundreds of people wanting to be in on it, which was both encouraging and discouraging. Before we got off of the phone, I sold myself again. I told her how recommitted I was to my treatment and to helping people, how I haven’t met anyone with CML before, how I want to get more involved with organizations, etc. I really felt that it would be therapeutic for me to be immersed in the lives and stories of others struggling with the same issues. And it would be a perfect opportunity to meet and network with people. That was on a Friday. Tuesday morning, I emailed Linda and asked if they had made their selections.
Linda,Good morning! I’m writing you to see if the Phoenix group has already chosen the CML patients for the Bristol Myers Squibb Focus group. I know you said that you would be sending out confirmation emails last Friday, but I wanted to confirm if the selection process ended up happening as scheduled.Thank you very much,
A part of me was hoping that they hadn’t, because I didn’t hear anything and I figured that the conversation I thought was really positive and encouraging might have been a duplicate of a thousand other calls. I anxiously checked my inbox all day for a response.
I’m pleased to share we would be happy to include you in the Focus Group. Please look for additional details to be provided by mail by Friday.
I was ecstatic! Finally, something positive to build on moving forward. After three difficult years of more downs than ups, I am being given an opportunity for my voice to be heard, for my life to serve as an example of what needs to be done to help other people. I can’t tell you how excited I am for this opportunity to meet with Bristol Myers Squibb representatives, to meet others with CML, to be a part of something bigger. It seems like I’ve had to experience setback after setback with Leukemia. I’ve been a dance partner to the pain of heartache and hopelessness more often than I haven’t, and the lessons learned have been more of an appreciation for the small things as opposed to the pure joy of something positive happening in my life. To think that I’ve had to endure those things to maximize this once in a lifetime opportunity made me sit in my work truck and shed a few tears of joy. Something good was happening for me due to CML, something I was excited about, something I would always remember moving forward, possibly something that could open other doors for sharing my story and for helping others.
I don’t have all of the details yet. I hope to have everything set up in a couple of days and I’ll be a little uneasy about it until I do, but I still wanted to share such great news with my friends. You can’t imagine how excited I am to be one of the twelve chosen to be a representative of those living with Chronic Myeloid Leukemia in the United States. This is such a great opportunity and I won’t take it for granted.