Cooley’s Anemia Advocacy Forum Update: January 12

January 12, 2015 – 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.

Congress Wraps Up Spending Bill

The 113th Congress completed its work on appropriations in mid-December, marking the end of what one Georgia lawmaker dubbed “the most do-nothingest Congress.”

The 2013-14 legislative session saw 234 pieces of legislation enacted into law-the fewest in almost six decades, and down from the 284 measures passed by the previous Congress. But one of the last bills to clear Congress in 2014 was a $1.1 trillion, 1,695-page bill to fund most of the government through September 2015.

We are pleased to note that the legislation includes $2.1 million for thalassemia-related activities, a small increase over last year’s funding. Also, in the explanatory report accompanying the legislation, Congress took pains to note its support for blood safety surveillance at major thalassemia research and treatment centers, as well as support forpatients outside of major research and treatment centers by working with the thalassemia patient advocacy community. Lawmakers went on to ask the Centers for Disease Control and Prevention (CDC) for an update on the latest efforts ongoing and planned for next year’s budget.

…What’s Next?

The 114th Congress that convened January 6 faces a number of challenges, the biggest of which is proving that the GOP can govern. And the tests will come early and often, starting with passage of a congressional budget blueprint that’s required before spending bills can begin to move through Congress.

House Speaker John Boehner (R-OH) may have an easier time controlling the reins of his caucus with the addition of new members who did not run on Tea Party principles. A tougher task falls to new Senate Majority Leader Mitch McConnell (R-KY), who must find a way to get things done without having the 60 votes needed to stop a filibuster. But McConnell has made clear his intention to restore “regular order” to the legislative process, starting by allowing committees to function as they have in the past – formulating legislation, bringing it to the Senate floor and allowing amendments to be offered, debated and voted on. Whether Democrats (or some of his Republican colleagues) will allow that to happen remains to be seen.

HRSA Announces New Thalassemia Funding Opportunity

The Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau is accepting applications for fiscal year 2015 for the thalassemia component of the HRSA National Hereditary Blood Disorders Program. The purpose of this cooperative agreement is to support a demonstration project to improve the identification of individuals with thalassemia and access to quality medical services including the development of recommendations for thalassemia-related screenings, diagnosis, education, regular blood transfusion and treatment for iron overload and medical complications resulting from chronic transfusion therapy.

The due date for applications is February 23, 2015.

FDA Urges One-Year Limit of Gay Men’s Blood Donations

Federal regulators intend to eliminate a lifetime prohibition on accepting blood donations from gay and bisexual men, instead requiring a one-year waiting period since donors’ last male sexual contact.

The Food and Drug Administration has announced that it will issue a draft guidance recommending the proposed policy change, which will include a period for public comment. The one-year celibacy requirement will fall short of the wishes of some activists, who have asked that men in monogamous relationships be able to donate without such hurdles.

“Compelling scientific evidence is not available to support a change to a policy to a deferral period of less than one year while still ensuring the safety of the blood supply,” said Peter Marks, deputy director of the FDA’s Center for Biologics Evaluation and Research, on a conference call with reporters.

The new policy is akin to other restrictions in place for women and men at increased risk for HIV infection, he said.

A panel of advisers to the Department of Health and Human Services, the FDA’s parent agency, in November voted 16-2 in favor of a policy that would instead ask men who have sex with other men to defer blood donations for a year, though that recommendation was binding.


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