Cooley’s Anemia Advocacy Forum Update – July 30

July 30, 2014The 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.)

The following report comes from Lyle Dennis and Katie Schubert of the Cooley’s Anemia Advocacy Forum:

Senate Appropriations Committee Posts Report

Late last week the Senate Appropriations Labor-Health and Human Services-Education Subcommittee posted its unofficial report online. The report is intended to direct federal agencies to focus on certain priorities and indicates the priorities of the Appropriations Committee. When the bill is taken up by the full Senate Appropriations Committee and voted on by the Senate, the agencies are then obligated to respond to the report, telling Congress the progress it has made.

This unofficial report is helpful to us as advocates because we can work with Congress to shed light on thalassemia, and in fact the Committee included $2.099 million for thalassemia specifically in the CDC’s Division of Blood Disorders at the National Center for Birth Defects and Developmental Disabilities. This amount is the same funding level as this year, and is a positive sign that the Committee has heard our collective voices.

Congress Set for Recess

Each year members of Congress schedule a summer district work period during the month of August. In an election year, this likely means that your member of Congress may schedule additional Town Hall meetings back home. This is an opportunity for you as a constituent to hear about what your elected officials are working on and ask them questions. To find out if your Representative is scheduling meetings in August, visit the House website and find your Representative’s home page. You can sign up for their electronic newsletter and get up to speed on what your Representative in the House and your two Senators are working on.

Congress adjourns on August 1 and returns for business following Labor Day.

ACA Update

Recent data collected by the Urban Institute’s Health Reform Monitoring Survey (HRMS) has shown several important findings with respect to the Affordable Care Act.

The latest announcement from HRMS includes that the number of uninsured Americans is declining – by 8 million people between September 2013 and June 2014. This is in large part due to the Medicaid expansion included in the ACA, and most of those who now have coverage are young, male and minority adults. The survey also found that those who are now purchasing coverage are most likely to use a phone call for assistance rather than sign up over the web. The use of call centers, navigators, application assisters, certified application counselors or community health workers via Medicaid or other insurance companies is very helpful to those who desire more information when comparing plans. Unsurprisingly, the survey also found that of those who remain uninsured, they are likely to live in states that have NOT expanded Medicaid. Finally, some people who are interested in purchasing health insurance coverage are not signing up because they feel that they cannot afford it. In fact, many are not aware of the fact that there are subsidies available to them.


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