CAF Works to Enhance HRSA’s Focus on Thalassemia

September 2, 2014 – Through a series of meetings, phone calls, and “listening sessions,” the Cooley’s Anemia Foundation (CAF) has been working diligently for months to assure that the Health Resources and Services Administration (HRSA), which is an agency of the U.S. Department of Health and Human Services, fully understands and appreciates the complications that are involved in the treatment of thalassemia.


The issue involves a planned Funding Opportunity Announcement (FOA) by HRSA that will support the provision of services to a number of thalassemia treatment centers. (We won’t know the exact number until the FOA issued.) In very early discussions with HRSA, they gave the Foundation indications that the funding would be paired with that included in an FOA related to sickle cell disorder. In other words, if an academic health center was funded for its sickle cell program, it would also receive thalassemia-related funding.

Why might that be a problem?

While that might sound “efficient” on the surface, in fact, it could be a serious problem for thalassemia. First and foremost, these are two very different disorders. While they are both characterized as hemoglobinopathies and there is a small cadre of individuals with sickle cell who receive blood transfusions, they are very different disorders medically.

The expertise in the clinical setting for the two disorders is located in different academic medical centers in different parts of the country. Likewise, the patient populations that need the services are located in different places throughout the nation. This is particularly concerning since HRSA has raised the prospect of funding these centers on a regional basis – but without sufficient funding to cover every region.

If the sickle cell funding were to go to a center in a region of low thalassemia incidence, the thalassemia money would follow – with few patients to treat. Conversely, those areas where patients are concentrated – the Northeast, Mid-Atlantic, Upper Midwest, and West Coast could end up with no services available.

What is CAF doing?

The Foundation has raised objections to this approach in a number of settings, most recently in a listening session that included the highest-ranking officials in the Maternal and Child Health Bureau, the HRSA unit that oversees the program. Historically, HRSA has been a good friend of the Cooley’s Anemia Foundation and, more importantly, of the patients and families that are dealing with issues that accompany it. They have been responsive to our requests to be heard and we are confident that our positions are being taken into consideration as the plan is developed.

The award of this funding is targeted for June of 2015. While that sounds far away, the decisions are being made now that will determine the structure and nature of the program, define the eligibility for funding, the number of grants to be awarded, and so. And that is why we are so involved in this issue at this time.

(Thank you to Lyle Dennis for providing this article.)

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