The IMF was one of several advocacy groups invited to participate at the PRG (Progress Review Group) Roundtable meeting that took place December 13-15, 2000. The PRG was established by the National Cancer Institute to help set research priorities for myeloma, leukemia and lymphoma.
Initially, the PRG was only going to include leukemia and lymphoma but, thanks to a concerted group effort by the myeloma community, myeloma was added to the agenda. Those of us representing the myeloma community noted that there were far fewer myeloma doctors and researchers participating than for the other two diseases – we need a stronger presence at future meetings. Another concern voiced by the myeloma experts present was that most subcommittees were chaired by people who aren’t myeloma experts, yet these are the people who will be making the recommendations to the NCI.
The sessions covered a broad range of topics including biology, epidemiology, clinical trials, diagnosis, prognosis, and therapeutics. I attended the Partnership Platforms; Education, Communication & Behavior Research; and Outcomes Research sessions. IMF Board of Directors member Mike Katz participated in sessions on Biology (lymphoid tissue), Clinical Trials Methodology and Therapeutics.
The PRG was quite an experience for me and Mike – a great opportunity to represent myeloma patients in the US as well as our global family since what happens in myeloma research in the US affects patients worldwide. But the PFG is only one step toward achieving appropriate level funding for myeloma research. Dr. Robert Kyle, Chairman of the IMF Scientific Advisory Board, summed it up best when he said, “We’ll know the PRG was a success if we get a significant increase in funding for myeloma research.” Our continued advocacy efforts will help ensure that the initiatives are properly funded and implemented and the IMF is committed to seeing PRG recommendations become reality.
IMF President Susie Novis(4th from right)
and Board Member Michael Katz (sixth from right)