Cooley’s Anemia Advocacy Forum Update – October 17

October 17, 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.

NCATS Announces New Research Project Aimed at Thalassemia

The National Center for Advancing Translational Sciences (NCATS) announced just this week new pre-clinical drug development projects. Of the three they announced, one is aimed at thalassemia. The research is supported through the Center’s Therapeutics for Rare and Neglected Diseases(TRND) program. The TRND program creates the opportunity to partner on research related to rare and neglected disease drug development to move into human clinical trials.

The project also pertains to sickle cell disease, and is intended to develop a drug candidate. Per NCATS’ announcement, “the investigator has identified that the drug PB-04, which is currently approved to treat another condition, has the potential to treat beta-thalassemia and sickle cell disease. The goal of this project is to develop this existing drug as an effective therapy targeted at the underlying cause of both blood disorders.” The full announcement can be found here (

A senior representative of NCATS participated in the Foundation’s recent meeting on the NIH campus with six different government agencies to find areas of commonality in research and programs for thalassemia patients.

NCATS is the newest of NIH’s 27 Institutes and Centers, established in December 2011. The mission of NCATS is to “catalyze the generation of innovative methods and technologies that will enhance the development, testing and implementation of diagnostics and therapeutics across a wide range of human diseases and conditions.”

Simplified Forms to Assist with Health Insurance Enrollment in 2015

With open enrollment just around the corner for 2015, the U.S. Department of Health and Human Services is ramping up its efforts to ensure a smooth enrollment period. This week officials announced that it is on track to handle the web traffic on that it expects come November 15. This traffic includes from both computers and enrollment via mobile devices.

New CEO of the Marketplace Kevin Counihan, who ran Connecticut’s health insurance marketplace, was brought in this summer to ensure that the open enrollment period goes much smoother than last year. Additionally, if a participant’s circumstances have changed since last year – like a change in employment, access to health insurance, marital status or number of people in a family – then people can sign up for coverage before the official period begins. According to HHS 20,000 people have already used these new forms.

Those who already have a plan are encouraged to “shop around” to make sure that they are getting the best plan for theirs and their family’s circumstances. As of August 15th, 2014, 7.3 million Americans had already paid their premiums for coverage, and it is currently projected that a total of 13 million people will be enrolled for 2015.

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