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Spring 2000 Volume 3, Issue 8:
NCI Director's Speech And Announcement Highlight IMF Patient and Family Seminar
By Greg Brozeit
National Cancer Institute Director Dr. Richard Klausner's speech outlining advances in cancer research highlighted the Washington, D.C.-area IMF Patient & Family Seminar held at Tyson's Corner, Virginia on January 28-29, 2000.

Significantly for the myeloma community, Dr. Klausner announced multiple myeloma would be included in the NCI Progress Review Group scheduled for leukemia and lymphoma in April 2000. Dr. Klausner left open the possibility of having the myeloma group meet as a subcommittee.

Progress Review Groups (PRGs) convene representative members of a particular disease community, including researchers, practitioners, patients, and advocates. Scheduled every three months by the NCI, these PRGs review the current state of research in the field, progress at the NCI, and make recommendations for future research activity. In short, PRGs produce informed "game plans" for the NCI.

Dr. Klausner's announcement was significant because it will speed up any subsequent actions within the NCI research apparatus. According to sources close to the NCI, the next open spot for a PRG was as long as three years away. This action also helps fulfill some of the congressional intent expressed in last year's appropriations legislation (see Vol. 3 No. 7 issue of Myeloma Today) calling for the NCI to convene a "consensus conference" or "scientific meeting" on myeloma research.

Klausner Optimistic About Progress

Dr. Klausner's speech was a preview of his testimony before the House Labor, HHS, and Education Appropriations Subcommittee scheduled for February 15, 2000. Noting that "knowledge that cancer cells develop by changing their molecular profile," Klausner set out to explain NCI's plan to provide better methods of early detection and targeted diagnosis and treatment options.

Targeting and understanding cancer cells at the molecular stage through better imaging techniques, innovative computer-based technologies, and tying the NCI drug discovery program to more basic research were topics at the heart of the director's mission. He also announced a formal restructuring of the clinical trials program to "increase… efficiency and limit administrative burdens" for patients willing to participate.

While noting the need for basic research at the molecular level, Dr. Klausner also acknowledged the need to target specific knowledge toward particular cancers, such as multiple myeloma. This, he explained, was the purpose of a Progress Review Group (see above) – to have the best experts in particular cancers review activity at the NCI and determine how best to maximize resources to target the individual characteristics of distinct cancers.

According to Dr. Klausner, PRGs usually determine that the NCI "is already doing 80 percent of the recommendations," and gives an indication about "how to address the 20 percent" of new ideas.

The testimony and supporting graphics of Dr. Klausner's speech can be accessed at http://www.nci.nih.gov/legis.

More than 430 patients and family members braved the winter storms to attend the meeting, approximately 85% of whom were first-time attendees to a myeloma seminar. An additional 200 watched the proceedings on cancereducation.com, an internet site dedicated to comprehensive cancer knowledge and delivery of information.

The faculty included Dr. Robert Kyle of the Mayo Clinic, Dr. James Berenson of the UCLA School of Medicine, Dr. Raymond Comenzo of the Memorial Sloan Kettering Cancer Center, and Prof. Brian Durie of the Cedars-Sinai Compre-hensive Cancer Center. Unfortunately, IMF Scientific Advisor Dr. Bart Barlogie of the Arkansas Cancer Research Center, and a number of registrants were unable to attend because of a winter storm in the southwest.

"I had the opportunity to hear from the best myeloma doctors in the world – who were, by the way, incredibly accessible and spent hours answering individual questions," said Gail Bolcar, from northern Virginia, who was attending her second seminar. "Equally important—and totally unexpected—was the incredible feeling of energy and hope generated by 400-plus people in the same room, fighting the same battle."

A number of attendees repeatedly expressed their appreciation to the IMF for the opportunity to interact with other patients, family members, and experts. "I felt comfortable asking the questions I needed to ask," was a common theme throughout the conference.

Others expressed having initial apprehensions going into the seminar, but leaving with feelings of belonging to a larger community and not being isolated. "All in all, it was an amazing experience that will keep me going for a long time," said Gail Bolcar as she reflected on the weekend.

The format of the traditional pre-seminar welcome dinner was changed to honor Rick Alvarado and Susan Alvarado with the First Annual IMF Public Service Awards. These awards will be presented annually to recognize achievements in advancing the cause of myeloma research through public policy advocacy.

Additional awards were presented earlier in the day to Congressman John Edward Porter of Illinois and Senator Arlen Specter of Pennsylvania. Congressman Porter and Senator Specter provided the leadership for the legislative language urging the NCI to increase myeloma research.

Rick Alvarado, a retired lobbyist, and his daughter, Susan Alvarado, helped navigate through the congressional process for the IMF last year. Their efforts, along with individuals throughout the nation, provided the support for last year's legislative achievements.

Rick's public service career stretches from a childhood in Washington, DC spent in and near the corridors of Congress to the Navy's Judge Advocate General Corps and through to the corporate vice-presidency of the Signal Companies. Rick has been a myeloma patient for more than four years. Now retired in Boca Raton, Florida, Rick provided his expertise to develop the arguments to Congress about the need for urgent increases in myeloma research.

Susan, a principal in her own Washington, DC government relations firm, donated her time and effort to open doors, accompany the IMF at meetings, and put the myeloma research agenda on the congressional radar screen. Susan's selfless talents helped the IMF to emphasize the urgent need for more research to benefit today's myeloma patients.

(l-r) Prof. Brian G.M. Durie, Nurse Maureen Carling, Dr. Robert A. Kyle, Dr. James Berenson, and Dr. Raymond Comenzo

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