WASHINGTON-Witnesses 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.
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 recommendations:
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).