Monday, April 07, 2008

Mission Days Part 2

The second day of the LLS Mission Days has been quite eventful and educational. It is probably best described as an emotional roller coaster. The day started with a networking session in the morning with other chapters. It was a time to brainstorm about what has worked and what hasn't for the LLS in terms of fund raising efforts. It was interesting to learn about other ideas that chapters use to fund raise. I was sitting at a table with people from California, Delaware, Pennsylvania, North Carolina, and New Mexico. I think I was the only patient volunteer, but could not be sure. This session was motivating, however, because it did provide several great ideas for things that could be done on the local level.

I then went to a talk on Comprehensive Cancer Care presented by someone from the American Society of Clinical Oncology. She talked about efforts to improve treatment plans for cancer. It was not totally relevant to the LLS. What was most frustrating was that this presenter spoke to the audience as if everyone knew about her references. For example, she said something like I know you have all read the IOM report. I am not even sure what the IOM is, let alone their report. Needless to say, this was not the most useful talk.

An awards luncheon followed where we sat with other people from North Carolina, Illinois, and California. Across from me sat another woman who was a volunteer from North Carolina. She was introduced to me as a survivor. When I was asked by someone at the table how I became involved, I started going into my story of being diagnosed with CML. It turned out that Dorothy from North Carolina also has CML and was diagnosed in 2001. She also takes Gleevec. I spent some time talking with her after the lunch. She was in some of the early trials of Gleevec and goes to MD Anderson for treatment. It was great to see someone who has been PCR negative so long. Our conversation was quite interesting because she was so knowledgeable about CML and the latest findings. It was great to have the opportunity to compare notes and discuss what it is like to have CML. As the day went on, I heard numerous people talk about having CML and taking Gleevec, but it was so busy, I did not get to speak with them directly.

As interesting as it may seem, I have not spoken to many people with CML. Although I write this blog, I do not spend much time talking about CML. Today, I talked quite a bit about my experience and it did feel a little awkward. What I have learned, however, is that I have a powerful story to tell and that will be important tomorrow as we meet with the congressional delegation.

The final events of the day was legislative boot camp. We learned about the initiatives we are trying to talk to the congressmen and senators about tomorrow. For each agenda item, a speaker talked about a personal experience about why these initiatives were so important. These were extremely emotional. One woman spoke about access to clinical trials for her mother. Despite having good health insurance, her mother was denied access to a clinical trial for her diagnosis of multiple myeloma. Traditional therapies did not work and her doctors suggested and experimental medication. Although the treatment is generally covered, routine care is not. Her insurance company denied the request for a long time, leading to even more expensive traditional care. Her mother helped introduce legislation on Capitol Hill so that others would have better access to clinical trials. Her mother passed away in December. After this woman spoke, she was given a standing ovation for being so brave to tell this sad, but important story. It reminded us all of why we were here and how powerful a personal story can be.

Tomorrow I head to Capitol Hill to speak with legislators and explain the initiatives set forth by the LLS. I imagine I will be telling my personal story rather frequently. Let's hope it is useful in pushing for the funding that is needed.


Melissa said...

Dear Jon,

I am so proud of you and all of your accomplishments. You have inspired us all with your positive attitude and tireless efforts to create an awareness for this important cause.
I love you,

Anonymous said...


Thank you for all of your hard work in being a voice for our Chapter and the mission of the Society. It sounds like you're having a busy and productive few days in Washington.

From all of us here at the RI Chapter, thank you for all that you do!

Erin A.

Annie - Steven's mom said...

Thank you, Jon. Thank you!
love and light
Steven' mom