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Special Edition - June 2002 Volume 4, Issue 11:
The IMF Goes to Washington
By The Unknown Patient
The Unknown Patient has done his share of traveling for the IMF. This June, it was time to pack the Unknown bags again and haul the Unknown bones onto the USAir Shuttle to Washington, DC. Your Unknown friend agreed to accompany IMFer Mike Katz for a week to include the One Voice Against Cancer (OVAC) Advocacy Day, a Senate hearing on cancer research funding, meetings at the National Cancer Institute (NCI), the IMF Patient & Family Tysons Corner Seminar, and the Eastern Cooperative Oncology Group clinical trials meeting. How Mike got mixed up in so many things remains Unknown.

First on the agenda was the OVAC advocacy training sessions. The sessions were intended to prepare us for lobbying activities planned for the next day, to coincide with the Senate Appropriations Committee hearing. Attendees included advocates from across the US, representing over forty different advocacy organizations and a wide variety of cancers. The training focused on understanding the government institutions and programs that deal with cancer research, the congressional allocations process, lobbying and advocacy. The sessions offered some really good information to help us all understand what we were asking for and how to ask for it. It also provided a great opportunity to meet so many committed advocates and compare notes.

After the training sessions, we regrouped by state and discussed who was going to be attending each of the lobbying sessions with Senate and House members and who would play what role at each session. When meeting with members of Congress or their staff, our job is to explain why we’re there, as constituents and cancer advocates. We then have the opportunity to talk about the importance of cancer research, personalize it by sharing our own stories, and then deliver the “ask.” The “ask” outlines specific appropriations for the NCI, the National Institutes Of Health (NIH), the National Center for Minority Health and Health Disparities, and the Centers For Disease Control (CDC), to fund cancer prevention, treatment, and research that we would like to be included in this year’s appropriations.

The next morning we set out, en masse, for Capitol Hill to attend the Senate Appropriations hearing, chaired by Iowa Democratic Senator Tom Harkin, assisted by ranking Pennsylvania Republican Senator Arlen Specter. These senators are both cancer survivors, and are passionate about cancer research.

Mike and I were a bit winded and more than moist after hustling to get to the Hill in time to get good seats for the hearing. IMF President Susie Novis was chosen to represent OVAC on the witness panel, so we were pretty excited and wanted to make sure we could be there to see it live and in person.

The Senate Appropriations Sub-committee on Labor, HHS, Education, and Related Agencies hearing began with testimony by HHS Secretary Tommy Thompson. He focused on activities at the NCI and the NIH, which include major investments in cancer research, especially for prevention and treatment. Senator Harkin then called the witness panel, which included:

  • Elmer Huerta, Cancer Preventorium, Washington Hospital Center
  • Ronald Herberman, Director, University of Pittsburgh Cancer Institute
  • Susie Novis, President/Founder, IMF
  • Michael Bruene, Brain Cancer Survivor
  • Steve Case, Chairman, AOL Time Warner

Dr. Huerta, a prominent physician and radio personality, was the first to speak. Dr. Huerta’s testimony focused on cancer prevention and on treating the whole person and not just the cancer. He was followed by Dr. Ronald Herberman, a cancer researcher, who spoke about the progress that has been made and the promise of new technologies and new directions in cancer research.

IMF President Susie Novis was next, representing OVAC. Susie’s testimony laid out a logical case for increased funding but also personalized the need by sharing how myeloma altered her life. She also introduced myeloma patient Mary Godwin, a nurse from Cedar Rapids, Iowa, and her daughter Lanissa. Susie noted that Brad High, a patient from Pennsylvania, was to attend but lost his battle with myeloma just a few weeks before the hearing. Susie finished her testimony by reminding the assembled crowd that everyone in the room has been affected by cancer and that we cannot afford not to fund the research necessary to end the suffering. When she was done, the room burst into applause, led by Senator Harkin who gave her a big “thumbs up,” and thanked her for a “powerful statement.” Way to go Susie!

Brain cancer survivor Michael Bruene gave an emotional statement, personalizing the horror of cancer and the special challenges of dealing with incurable disease. He was followed by AOL Time Warner Chairman, Steve Case, whose brother Daniel was fighting brain cancer. (Daniel passed away at age 44, four weeks after the hearing.)

At the conclusion of the hearing, Senator Harkin asked if anyone had any additional comments they wanted to make. Susie Novis jumped in, reiterating the need to fully fund the NCI bypass budget and observing that over 70% of approved NCI grants cannot be funded. This set off a flurry of dialog on how big a difference the doubling of the budget had made, capping the hearing with a bit of excitement and making it clear that there were significant challenges ahead but much promise for a brighter future.

Friday was a busy day for Mike and his Unknown escort. First stop, the NCI, for a meeting with the Director, Dr. Andrew Von Eschenbach. Mike and fellow members of the NCI Director’s Consumer Liaison Group (DCLG) were set to discuss the future role and priorities for the group with the Director and his staff. Dr. Von Eschenbach was very interested in our views but also spent considerable time talking about his ideas, soliciting feedback, and facilitating a very animated, interactive discussion. Dr. Von Eschenbach is a very intelligent man who clearly cares about cancer patients and their issues. His appointment bodes well for the future.

From there, your Unknown friend dashed to the NCI Clinical Center. IMFer Norma Holmes had arranged for a tour of the Clinical Center, which is where the NCI conducts cancer clinical trials and performs much of its “intramural research” – the NCI’s internal research effort, conducted by NCI scientists. A number of NCI research scientists presented promising new projects that could yield results for myeloma patients within the next few years. The approaches being discussed are truly novel, making use of the most recent advances in molecular biology and targeted therapy.

From there, we hitched a ride to Tyson’s Corner with IMF advocacy consultant Greg Brozeit. We joined the IMF crowd for the welcome reception and dinner that preceded the Patient & Family Seminar. We were joined by NCI Director Andrew Von Eschenbach, who took time out of his busy schedule (yes, there are people even busier than the Unknown Patient!) to join us and share his views on future directions in cancer research and specifically, how myeloma research will be impacted. The Unknown Patient was especially pleased that Dr. Von Eschenbach thanked the IMF and its members for putting a face on myeloma and the need for further research.

We were also fortunate to have with us Drs. Kyle, Greipp, and Rajkumar of the Mayo Clinic, as well as Dr. Jagannath of New York’s St. Vincent’s Comprehensive Cancer Center. And, it was great to see so many old and new friends, myeloma patients and family members, enjoying each other’s company and sharing experiences.

The next morning began bright and early with the IMF seminar. The seminar began with Carol Svec, patient advocate, speaking about how to be an “active patient.” Carol was followed by our own Mike Katz, who spoke about how to get organized and keep track of your medical records and test results. They were followed by Drs. Kyle, Durie, Rajkumar, Jagannath, and Coumans, who covered a broad range of myeloma-related topics. The breaks were a wonderful opportunity to compare notes and make new friends. The Unknown Patient missed most of the breakout sessions, ducking out with Mike Katz, who was speaking about clinical trials at the ECOG meeting in DC. After Mike’s talk, it was back to Tysons Corner for the conclusion of the IMF seminar, which found the attendees energized and hopeful. The Unknown Patient has been to almost all of the IMF’s seminars and never ceases to be amazed how there always seems to be something new and so many wonderful new people at each session.

The week ended on Sunday, as the Unknown Patient tailed Mike Katz at the ECOG meeting. Sunday’s program included a meeting of the ECOG myeloma committee, which is responsible for developing and managing large-scale, national clinical trials for multiple myeloma. Mike also attended a meeting of ECOG’s Underserved Committee, chaired by IMF board member Dr. Edith Mitchell, which addresses issues of how to make clinical trials more accessible to members of underserved populations. The day ended with a plenary session at which Mayo Clinic myeloma specialist Dr. Rafael Fonseca received two awards, the ECOG Young Investigator Award and an award for an Outsanding Research Project. ECOG chair Dr. Bob Comis characterized Dr. Fonseca as a “young researcher taking the Group by storm.” Great to have talented young people like Rafael joining the ranks of scientists battling myeloma!

After the plenary session, the Unknown Patient followed Mike to a reception, after which we made a bee line for the airport, grabbing the last Shuttle back to New York for a well-deserved, albeit short rest.

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