The International Myeloma Foundation to Hold Washington Meeting on Drug Regulation and Reimbursement to Make Health Reform Meaningful and Cost-Effective for Patients with Rare Cancers
NORTH HOLLYWOOD, Calif.-(Business Wire)-September 23, 2009 - The International Myeloma Foundation (IMF)—supporting research and providing education, advocacy and support for myeloma patients, families, researchers and physicians—today said health reform must move beyond the current government proposals to be relevant and medically meaningful to patients with rare cancers and other diseases. Specifically the IMF calls for proposals that can improve care, save money and encourage continued medical progress and innovation:
- a modernized system of drug approvals that makes new drugs available faster for patients with serious and/or incurable illnesses
- an equitable reimbursement system that allows physicians and patients to choose the most appropriate treatment based on medical need, not mode of delivery (currently many patients pay higher out-of-pocket rates for oral drugs than for IV drugs or hospital-based procedures)
Myeloma is a rare cancer of the bone marrow that exemplifies both the progress that can be made in treating cancer and the obstacles and delays put in place by a patchwork system of regulation and reimbursement. The proposals will be discussed by medical specialists, policy experts and patients at a Foresight Seminar organized by the Institute for Alternative Futures in the Russell Senate Building at 12 noon on September 29th.
“These proposals can help avoid many of the medical missteps I faced when diagnosed with myeloma a year-and-a-half ago,” said Amy Wolverton, a Washington attorney, who was diagnosed in her late thirties. “The approach to my disease treatment was inconsistent. I was told by two doctors to just ‘get my affairs in order,’ but I was enrolled in a clinical trial for an autologous bone marrow transplant by a third doctor. Then, my treatment was delayed, and my spine fractured. Today I’m on an oral drug, feeling fine and working hard. Had the system worked, I might have had this from the start.”
Currently drugs for even rare, deadly diseases must undergo time-consuming and expensive phase three clinical trials that can take years before the drugs are approved, and then they are approved for just a limited group of patients. For example, a drug might be approved for relapsed patients, but needs to undergo a separate set of clinical trials for patients who are newly diagnosed. These layers of approval are required before drug companies can tell doctors about current data or developments, and patients such as Amy Wolverton may be treated by doctors who are not informed about the latest treatments.
“The regulatory system often lags behind what leading physicians do in their practice and what insurance programs already reimburse,” said Brian G.M. Durie, M.D., chairman and medical director of the IMF. “We believe modern data-gathering capabilities, better use of existing data, and post-marketing surveillance can all be used to get drugs to our patients faster. This would not only improve patient care, but could also save money spent on drug development.”
A second proposal from the IMF also has the potential to improve patient care and save money. The IMF calls on government and private insurers to reimburse equally for treatments regardless of mode of delivery. Currently patients have significantly greater out-of-pocket expenses for oral drugs compared to intravenous drugs and hospital-based procedures such as transplants. However, the IMF says that when medically appropriate, oral drugs are a cost-efficient form of treatment that should not be discouraged by insurance plans.
Health policy expert Stuart Altman, Ph.D., will also take part in the seminar to respond to the comments and proposals in real time. The Foresight Seminar is open to the public by registering at www.altfutures.com.
ABOUT THE INTERNATIONAL MYELOMA FOUNDATION
The International Myeloma Foundation is the oldest and largest myeloma organization, reaching more than 185,000 members in 113 countries worldwide. A 501 (c) 3 non-profit organization dedicated to improving the quality of life of myeloma patients and their families, the IMF focuses in four key areas: research, education, support, and advocacy. To date, the IMF has conducted more than 200 educational seminars worldwide, maintains a world-renowned hotline, and operates Bank on a Cure®, a unique gene bank to advance myeloma research. The IMF can be reached at (800) 452-CURE. The global Website is www.myeloma.org.
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