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Winter 1999 Volume 3, Issue 7:
U.S. Congress Calls for Increase in Myeloma Research
By Greg Brozeit
Congress' interest has the potential to begin a process that could, in the foreseeable future, double the amount of all public and private research
12.01.99
Relying on recommendations made by the International Myeloma Foundation, the U.S. Congress has urged the "use [of] all available mechanisms" to increase research into multiple myeloma in the fiscal year 2000 funding bill for the National Cancer Institute (NCI).

"This is unprecedented," said IMF President Susie Novis. "Congress's interest has the potential to begin a process that can, in the foreseeable future, double the amount of all public and private research." More importantly, it means that myeloma can no longer be ignored in public policy.

Senate Appropriations Chairman Ted Stevens (R-AK), Senate subcommittee Chairman Arlen Specter (R-PA), and House subcommittee Chairman John Edward Porter (R-IL) provided the leadership to include the language in their respective reports on the bill. The reports guide agency administrators about legislative intent of the various parts of the law.

The House and Senate Appropriations Committees adopted legislative report language that closely followed the recommendations made by IMF President Susie Novis earlier this year (see Myeloma Today, Vol. 3, No. 6, page 7) to urge NCI to: Òenhance its support of promising research and encourage new investigators into the field; convene an NIH-sponsored Consensus Conference to determine the state of [myeloma] research, promising opportunities, and make recommendations to NCI for further research.Ó

In addition, both the House and Senate appropriators recognized the need to "integrate epidemiological and occupational health research and data gathering activities relevant to" myeloma to develop better databases about "the disease and its suspected causal agents." The House also made special note of the need for "the Institute to enhance research on the skeletal complications of malignancy."

The House-Senate conference agreement for the bill recommended a fiscal year 2000 funding level of $3.332 billion for NCI, a 14.8% increase of $429.9 million over the previous year. Significantly, this agreement was higher than both the Senate and House recommended in their bills. The National Institutes of Health budget, of which the NCI funds are the largest portion, was set at $17.9 billion.

However, the timing of the release of those funds remains in question. According to the National Coalition for Cancer Research, "The package also delays $7.5 billion of the $17.9 billion provided to NIH until September 29, 2000, which is two days before the end of the fiscal year. The goal of this provision is to limit the amount of money the government will spend at NIH in fiscal year 2000, and critics assert that the provision will seriously hamper research efforts."

At press time, the resolution of this issue awaits a more far-reaching agreement between the administration and the House leadership.

Copies of the full House and Senate Reports can be accessed under the Labor, HHS appropriations section at:

http://lcweb.loc.gov/global/legislative/appover.html

Full copies of the report can also be requested through your congressional offices. Ask for House Report 106-370 and Senate Report 106-166 and look under the respective sections on NCI.

If you have questions concerning myeloma and public policy, please contact Greg Brozeit at: greg.brozeit@worldnet.att.net

IMF Works With Cancer Coalition

The IMF recently partnered with the National Coalition for Cancer Research. The Coalition has a membership of 25 cancer advocacy organizations that include the American Cancer Society and Cancer Research Foundation. Based in Washington, D.C., the Coalition acts as an instrumental player in shaping the various public policy issues affecting patients, families, and researchers throughout the cancer community.

IMF Vice President Amy Nielson Palumbo and advocacy consultant Greg Brozeit participated in the National Coalition for Cancer Research congressional visit day on September 21, 1999. They visited with a number of congressional staff to inform them about myeloma and present the Coalition's concerns.

The Coalition advocated in support of doubling the National Cancer Institute budget to a level of $10 billion in fiscal year 2004. The current funding level is about $3 billion. In addition, the Coalition supports the inclusion of clinical trials reimbursements in any managed care or Medicare reform legislation.

That evening the Coalition presented the first annual "Congressional Champions" awards to six members of Congress who have provided leadership to make cancer research a federal priority. Senator Connie Mack (R-FL) was presented with the Lifetime Achievement Award. Congressional Champion awards were presented to Senators Tom Harkin (D-IA) and Dianne Feinstein (D-CA), and to Reps. John Edward Porter (R-IL), Rick Lazio (R-NY), and Rosa DeLauro (D-CT).

Sen. Mack, recognized as the strongest advocate for cancer research, has led bipartisan coalitions on issues important to the cancer research community including funding, clinical trials access, pain management, and Medicare. Sen. Mack founded the Senate Cancer Coalition, which he co-chairs with Sen. Feinstein, to heighten awareness of cancer research, early detection programs, improving cancer prevention and exploring innovative treatment options.

Sen. Harkin, ranking member of the Senate Appropriations Subcommittee on Labor, Health and Human Services and Education, has been influential in advocating for a sustained funding base for biomedical and cancer research. Sen. Feinstein is currently focused on creating a new National Cancer Act.

Rep. Porter, as chairman of the House Appropriations Subcommittee on Labor, Health and Human Services, and Education, was a key-player in securing a 15% increase in this year's NIH and NCI budget. Rep. Porter, one of the acknowledged statesmen in the House, has always made cancer and biomedical research a top priority.

Rep. Lazio, chairman of the House Cancer Awareness Working Group, regularly informs his colleagues about events and policy initiatives critical to cancer research. Rep. Rosa DeLauro, has led Congressional efforts to increase the federal commitment to cancer research and to block harmful riders to cancer drug development.

Sen. Mack and Rep. Porter recently announced that they will not seek reelection in 2000. Also, Sen. Mack, his wife, and Rep. DeLauro, are all cancer survivors.

More information on the Coalition can be found at: www.cancercoalition.org

IMF Urges Congress to Intervene in Medicare Battle

An administrative and political battle is being waged to prevent the Health Care Financing Administration (HCFA), the administrator of the Medicare program, from implementing a deeply flawed rule in Hospital Outpatient Services for cancer therapies including drugs such as Aredia. By setting unrealistic reimbursement standards, HCFA's proposed rule could have a major impact on the availability of drugs for all patients, regardless of their Medicare eligibility.

These rules have the potential of limiting access to certain drugs based on a patient's ability to pay rather than providing the best quality care. For example, the Medicare reimbursement for multiple myeloma patients receiving Aredia would be limited to approximately $75 per treatment. Because of the controversy, HCFA has delayed implementing the rules from January 2000 to July 2000 to allow a resolution of the issue.

After becoming aware of these onerous regulations, IMF President Susie Novis wrote House Ways & Means Health Subcommittee Chairman Bill Thomas (R-CA) on October 13, 1999 to ask him to include bisphosphonates, the class of drug to which Aredia belongs, in pending medicare reform legislation. At the time, the proposed legislation cited specific drugs "use[d] in cancer therapies" as exempt without mentioning bisphosphonates.

In late October, the House Ways & Means and the Senate Finance Committees passed legislation addressing the issue of Medicare reimbursements for cancer drugs.

The House bill, the Medicare Balanced Budget Refinement Act of 1999, has been amended to include drugs "use[d] in cancer therapies" and specifically mentions bisphosphonates. In the accompanying report language, which clarifies the legislative intent of Congress to HCFA administrators, bisphosphonates are specifically mentioned as a drug category to be covered and are exempted from HCFA's pending regulations for up to three years.

The Senate bill, the Balanced Budget Adjustment Act of 1999, includes the broad language of cancer therapies and includes specific provisions to exempt bisphosphonates. At press time, the final status of the legislation was yet to be determined.

Prior to these developments, Sen. Orrin Hatch (R-UT) introduced the Medicare Patient Access to Technology Act of 1999 that included a section addressing the issue of Medicare reimbursements for all drugs used in cancer therapies. Provisions of this legislation have been incorporated into the Medicare reform bills discussed above.

Myeloma patients and family members first became aware of this in mid-1998 when HCFA proposed its rules in the Federal Register. Comments about the rules flowed in from cancer advocates throughout the nation and the original deadline of December 1998 was extended until summer 1999. Despite the uproar, HCFA proceeded to implement its unfortunate rules, causing the pending legislative action.

IMF members throughout the nation have been contacting members of Congress and final legislative intent will have been determined after the printing of this article. Please check the IMF website for further updates.


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