Cooley’s Anemia Advocacy Forum Update: December 8

December 8, 2014 – The Cooley’s Anemia Advocacy Forum (CAAF) is a Cooley’s Anemia Foundation project aimed at helping thalassemia patients and families learn how to make their voices heard on federal issues of importance to the thalassemia community. (A brochure about CAAF can be downloaded by clicking here.) Following is a report from Lyle Dennis and Katie Schubert.

Funding Bill Comes Down to the Wire

Lawmakers hope to pass an all-encompassing funding bill within the next few days in order to avoid another government shutdown. If all goes well, the measure, called the omnibus appropriations bill, will include funding for the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA).

House Republican leaders are trying to convince their rank-and-file members on a spending approach that would fold together 11 appropriations bills, while including a shorter-term stopgap component for Homeland Security.

The omnibus spending bill is aimed at averting a shutdown threat while responding to President Barack Obama’s recent executive actions on immigration reform.

Under the plan being discussed, Homeland Security programs would only be funded for a few months, perhaps mid- to late March, enough time to give opponents of the president’s immigration plan a chance to vote on an alternative approach to reform.

In the meantime, the House and Senate appropriations committees are in negotiations to resolve the differences in spending levels between the House and Senate on the 11 remaining spending bills, which would run through September 30, the end of the 2015 fiscal year.

Key Committee Assignments in the New Year

While newly-elected members of Congress will not be sworn in until January, the game of musical chairs has already begun. Over the past few days, congressional leaders have begun the process of deciding which lawmakers will lead some of the key House committees that oversee programs of interest to CAF.

The Energy and Commerce committee, which has jurisdiction over NIH and CDC, will be headed by Rep. Fred Upton (R-MI). After a contentious battle, CAF is pleased to report that Democrats voted to appoint Rep. Frank Pallone (D-NJ) to serve as the ranking Democrat on that panel. In addition to being a strong supporter of our priorities, our National Executive Director Gina Cioffi, Esq. worked on Rep. Pallone’s congressional staff and continues to enjoy a close working relationship with Rep. Pallone and his staff.

The Appropriations committee panel that sets annual funding levels for NIH and CDC will be headed by Rep. Tom Cole (R-OK) and Rep. Rosa DeLauro (D-CT) will serve as the senior Democrat. Rep. DeLauro has been a long-time supporter of the Foundation.

Senate committee appointments will not be announced until early to mid-January, but it is expected that Senator Jerry Moran (R-KS) will be named to chair the Labor-HHS-Education subcommittee that determines annual funding for NIH and CDC. His Democratic counterpart will likely be Senator Patty Murray (D-WA).

The Health, Education, Labor and Pensions (HELP) committee that oversees public health programs will be headed by Senator Lamar Alexander (R-TN), with Senator Murray likely to be the panel’s senior Democrat.

CAF Weighs In On Federal Blood Safety Policy

On December 2, CAF joined with the American Plasma Users Coalition (A-PLUS) in presenting recommendations on the Food and Drug Administration’s (FDA) proposed revision of the current blood donor deferral for men who have sex with men (MSM).

In 2010, the coalition cautioned the FDA against a change to the MSM donor deferral policy, absent additional supporting data. At the time, the coalition noted that there were a number of factors which should be fully evaluated before making a revision to the policy, and called for further research focused on high-risk behaviors of both MSM and heterosexuals-research that could lead to a policy that would maintain or enhance the safety of blood and blood products.

Since then, research results indicate that it is appropriate to revise the current lifetime deferral to one year, provided that a robust comprehensive hemovigilance program is implemented.

CAF and its coalition partners now fully support calls for establishment of a Transfusion Transmitted Infections (TTI) Monitoring program prior to implementation of a policy change.

In a statement presented to FDA’s Blood Products Advisory Committee, CAF and A-PLUS wrote:

We believe the recently released research provides a scientific basis for revising the current lifetime deferral policy for MSM to a one-year deferral. However, a robust, comprehensive hemovigilance program must be implemented in parallel.

We also take note of and support the supplemental recommendations of the ACBTSA adopted during their recent November 2014 meeting regarding the need for a well thought out and coordinated communications plan for all relevant stakeholders as part of the implementation strategy of any policy revision. To maintain the integrity of the blood system, it will be essential to have clarity in the revised donor screening questions, as well as in the recruitment messages delivered to prospective donors and donors reentering the system.

HHS Secretary Burwell is likely to make a decision before the end of this year.
The full document can be accessed here.



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