Wednesday, April 09, 2008

A Day on the Hill

Wow! Yesterday was an exciting and exhausting day. I was quickly reminded that Capitol Hill is actually a large hill and the place is huge. My feet can attest to the physical efforts of just getting from building to building.

the Executive Director of the RI chapter of The morning began with a trip on the Metro to Union Station. We walked to the Dirksen Senate Office Building where we had a breakfast briefing and heard from two congressmen encouraging our efforts. Then we were off to our meetings. The Rhode Island contingent (myself, Bill Koconis, executive director of the RI chapter of the LLS, and Joe Gildea, a member of the board for the RI LLS and a national member of the Board of Representatives for LLS) had a couple of hours before our first meeting.

Interestingly, it was a busy day in the building we were in since the Senate Armed Forces Committee was grilling General Patreus about when we could start reducing our troop levels from Iraq. There were opponents and proponents of the war, making for some interesting interactions. This hearing did throw us for a bit of a loop because our first meeting scheduled with Senator Jack Reed from Rhode Island was not going to work according to our schedule since he was asking the General questions about Iraq. It turned out, however, that Senator Reed wanted to meet with us and had asked us to come down to the hearing so he could meet us. We were supposed to be escorted there by someone from his staff. When we got to his office, however, we learned that since Senators Hillary Clinton, Barack Obama, and John McCain were all at the hearing, the Secret Service would not allow us in.

At Senator Reed's office, we were soon joined by 5 other people from the National Staff of the LLS. This included the President of the LLS, the Vice President of Public Policy, and several other high-ranking members of the society. In addition, Lynn Aronson, the former Executive Director of the Rhode Island Chapter and currently working for the home office on grassroots advocacy also joined us. She knew Senator Reed well. She also happens to be the aunt of one of my best friends.

Needless to say, with this big crowd, I was a little intimidated. It was my first meeting and I had to give my talk in front of all these people. Senator Reed did not attend the beginning of the meeting, but instead we met with one of his legislative staff. He was a nice guy from Rhode Island who listened closely to what we were saying. I eventually told my story of how my life changed several years ago and why I was now in Washington advocating for the LLS.

Soon after, Senator Reed walked in. He had left the hearings to come and meet with us. He was such a nice man and really took charge of the room. I told him that I was from his hometown and we chatted a little about Rhode Island. Senator Reed was clearly in agreement with all of our initiatives so we were preaching to the choir to some extent. After our discussion on LLS matters, one member of our group asked him about the hearing and Iraq. Senator Reed spoke off the cuff about his feelings about the hearings and what is really happening with the Iraqi government. He has been to Iraq several times and as a former Army Ranger, is well versed in military operations. I found this to be fascinating.

This was an invigorating meeting. It made us feel like we were an important part of the legislative process and that our voices were being heard by the people we elect. It seemed that the whole group was quite pleased with our meeting. One person commented that the meeting was one of the best ones they had ever had with a Senator. We were off to a good start.

The Rhode Island contingent broke off from the larger group and went to our next visit with our newest Senator, Sheldon Whitehouse. We were not scheduled to meet with Mr. Whitehouse, but instead, some of his legislative staff. I did not feel as much pressure during this meeting and was able to speak a little more comfortably. About halfway through our discussion, however, Senator Whitehouse walked in to speak with us. He was very friendly and also on board with our agenda. He seemed interested in attending some of the local events, especially the regatta. We felt that this meeting also went quite well. You can see the picture of all of us above.

We took a little break and walked over to the house of representatives office building. We ended up eating in the cafeteria of the Cannon Building with hundreds of young legislative staffers. I was amazed at the young age of the staff. I quickly realized how influential they were, however. It is likely these young staffers do much of the leg work and advise the senators and congressmen about important issues.

After lunch we met with a legislative staff member from Congressman Langevin's office and later Congressman Kennedy's office. We went through our agenda items and they also seemed to agree with our issues and said they would pass on our message to the representatives.

We had a few hours to kill and we walked around the mall. After walking for some time, we decided to make a stop at the National Gallery of Art. We saw some famous impressionist pieces.

Our last event was a Congressional Honors reception in the Capitol Building. This was an interesting event, combining LLS volunteers and staff with legislators. During the event, we met Senator Ted Kennedy. Senator Enzi and Congresswoman Matsui were honored for their efforts to help the causes of blood cancer research.

We flew home late last night completely wiped out but encouraged by the democratic process. As cliche as it may sound, my voice does count and the politicians actually want to hear it. My view of the political process and certainly the federal government has changed drastically.

Today, as I reflected upon the experience, I was overwhelmed by what I had done. I felt strongly about the issues and realized that my story is an important one to tell. It only further emphasized the mission of the LLS and the reasons for asking for the funding changes for research.

My wife and I had time to discuss the events of the past few days as we drove to Dana-Farber to talk about my latest blood test results with my oncologist. Talk about a role change again. I guess I will always be a patient, but I can add advocate to the list as well.

By the way, my bloodwork remained steady. I still remain in molecular remission with a PCR value of 0.008%. I do not have to go back to Dana-Farber until September, but I head to Portland, OR next month to meet with Dr. Brian Druker again.

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.

Sunday, April 06, 2008

Dr. Gershon Goes to Washington

I arrived this afternoon in Washington DC (well technically Alexandria, Virginia) as part of Mission Days for the Leukemia and Lymphoma Society (LLS). I was honored to be asked to represent the Rhode Island contingent of the society as a volunteer and advocate. The idea of Mission Days is to meet with the congressional delegation from my state in order to advocate for programs that are important to the LLS. People from all over the country have come to Washington to advocate for blood cancer research. I will receive training tomorrow, and on Tuesday, I spend the day on Capitol Hill meeting with the Rhode Island Senators and Congressmen. I received the schedule today and my group has meetings with Senator Jack Reed and Congressman Patrick Kennedy. We will also be meeting with legislative staff for Senator Sheldon Whitehouse and Congressman James Langevin.

This is very exciting for me and represents a significant role change as well. While I have worked hard at fund raising for the LLS, I am now going to be advocating their agenda. Apparently I have a strong voice as someone who has been treated for a blood cancer and has been the beneficiary of the research that has been crucial to me. Perhaps this is where my experience can be most useful to others. I remember when we met with Dr. Druker in the fall we asked him what would be important for fund raising for his research. He said that more money is needed for the National Institutes of Health and National Cancer Institute.

The legislative agenda includes 4 important issues, increased funding for the National Institutes of Health and the National Caner Institute, the creation of a Blood Cancer Research Program at the Department of Defense, and Access to Clinical Trials. I was a little unclear about the last one, but apparently when someone enrolls in a clinical trial (e.g., testing a new medication) insurance companies can deny routine costs such as blood work, doctors visits, etc. During normal treatment (like I have undergone), the insurance company has paid for everything. If the clinical trials did not exist, however, the development of Gleevec and other treatments never would have occurred.

I will be writing as much as possible about the Mission Days, particularly after the day on Capitol Hill.