WASHINGTONWitnesses at the first-ever Congressional
hearing on hematologic cancers urged Congress to act on the recommendations of
the Leukemia-Lymphoma-Myeloma Progress Review Group (LLM-PRG). This group,
composed of more than 180 researchers, clinicians, patient advocates, industry
representatives, and government officials, released its report last May.
Speaking before the Senate Appropriations Subcommittee for the
Departments of Labor, Health and Human Services, and Education, Sandra J.
Horning, MD, of Stanford University, outlined the LLM-PRG’s core
Fostering partnerships among the National Cancer
Institute (NCI), academics, advocates, cooperative groups, the Food and Drug
Administration (FDA), and industry.
Developing education and training programs for
certification of physicians and centers for diagnosis, treatment, and clinical
trials in hematologic cancers.
Establishing innovative new research mechanisms to
foster collaboration among experts from multiple disciplines and institutions.
Dr. Horning is on the scientific advisory board of the Cure For
Lymphoma Foundation, which helped organize the hearing. It was spearheaded in
the Senate by Senators Tom Harkin (D-Iowa), Arlen Specter (R-Penn), and Kay
Bailey Hutchinson (R-Tex).
In her presentation, Dr. Horning also called for heightened
efforts to identify the reasons for the increased incidence of lymphoma,
improved coordination among NCI, FDA, and industry to bring new drugs to market
sooner, a system of payment for enrolling patients in lymphoma clinical trials
commensurate with their complexity and costs, and enactment of a patients’
bill of rights with comprehensive clinical trials coverage, including
industry-sponsored trials under regulatory authority.
Another witness was Larry Lucchino, lymphoma survivor and
president and CEO of the San Diego Padres. He described how he beat a 10%
survival prediction 16 years ago with an experimental bone marrow transplant.
Mr. Lucchino was president and CEO of the Baltimore Orioles
from 1988 to 1993, when he created his brainchild: Oriole Park at Camden Yards,
an old-fashioned, open, fan-friendly park that would usher in a new era of
ballpark architecture. "When I was handed a second shot at life, I wanted
to give something back. Reinventing baseball was how I could breathe new life
into something I loved," he said.
Other speakers included Geraldine Ferraro, former vice
presidential candidate and a myeloma patient receiving thalidomide (Thalomid);
her physician Kenneth Anderson, MD, of Harvard Medical School; and Hagop
Kantarjian, MD, of M.D. Anderson Cancer Center.
Two other survivors testified: Kathy Giusti, myeloma survivor
and president of the Multiple Myeloma Research Foundation, and Miles Pendleton,
a survivor of chronic lymphocytic leukemia. Representing industry was Dr. John
Holaday, founder and CEO of EntreMed (Rockville, Maryland).