The International Myeloma Foundation (IMF), the oldest and largest foundation dedicated to improving the life and care of myeloma patients, notes the 2010 Annual Meeting of the American Society for Clinical Oncology (ASCO) marks the first anniversary of the "Cancer Patient Statement of Principles." The IMF leads a coalition of cancer advocacy organizations whose principles outline critical needs for patients, stating:
“Putting a face to a problem makes it more urgent for our politicians and helps focus their resolve. It was empowering to be heard.”
- Prevention is the key to reducing the burden of cancer
- Continuing innovation is critical to early diagnosis and better treatment
- Equality of access to care is imperative
- Early approval of new treatments for deadly cancers is essential
Susie Novis, president and co-founder of the IMF, said, "We have seen patients suffer needlessly because they were limited to treatments their insurance companies wanted, rather than given treatments their doctors prescribed. We have seen patients who need better diagnostics and advanced treatments. We even see patients who might have been spared this disease if we had a better understanding of its causes. The time to meet their needs is long past due."
One of the first issues targeted involves insurance equality for all cancer treatments. Currently patients may have to pay more out-of-pocket for oral drugs than for intravenous drugs.
In Connecticut where the IMF and local patients were involved in hearings, the Governor just signed a cancer drug parity bill into law. Michael Tuohy, a Connecticut resident and 10-year myeloma survivor, told the committee that with new drugs he leads an active, productive life and has experienced years of remission. His wife Robin says all patients should have access to effective treatment plans based on their doctors' advice and not limited by arbitrary insurance restrictions.
In all, 10 states have now passed laws mandating reimbursement parity, seven states in the last year alone. In addition to Connecticut, myeloma patients and family members have testified before legislative hearings in California, Maryland, and New Hampshire, and are planning a campaign in Washington state. The federal government has begun to narrow some of the out-of-pocket costs for oral cancer drugs paid by Medicare patients — the so-called donut hole — but legislation (H.R. 2366) to address oral drug parity on a uniform national level is still pending in Congress.
The IMF is also focused on other issues including legislation to ensure that routine care costs are reimbursed for patients who are in clinical trials. The legislation was successfully included in the health reform bill passed and signed in Washington. The IMF is also calling for increased funding for myeloma research through both Department of Defense research grants and the 21st Century Cancer ALERT Act, still pending in Congress.
Jerry Walton, a myeloma patient with the southeastern Virginia support group, met with members of his state's Congressional delegation, and said, "Putting a face to a problem makes it more urgent for our politicians and helps focus their resolve. It was empowering to be heard."
Information for myeloma patients and caregivers who would like to learn how their concerns can be addressed is available on the "advocacy" tab at www.myeloma.org.
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