Hemophilia of Georgia exists so that people in Georgia affected by bleeding disorders live as normally and productively as possible. One way we seek to achieve this mission is through advocacy - actively giving a voice to the rights and needs of people with bleeding disorders.
Advocacy at Hemophilia of Georgia happens on several different levels.
- At the personal level, we empower clients and their families to advocate for themselves in their daily lives with schools, employers, and healthcare providers.
- At the professional level, we have social workers who will advocate for clients with the Social Security Administration, insurance companies, and school systems.
- At the societal level, we work to ensure that legislation passed in Congress and in the Georgia General Assembly addresses the needs of people with bleeding disorders.
Within our state, Hemophilia of Georgia has been successful in obtaining funding in the state budget to assist people with bleeding disorders who do not have access to insurance, Medicaid, or Medicare. We are a leading participant in the Cover Georgia Coalition, a group of organizations working together to make healthcare available and affordable for all Georgians.
At the national level, Hemophilia of Georgia advocates with the members of Georgia's congressional delegation to pass legislation beneficial to our community. The agency played an active role in achieving passage of the Ricky Ray Hemophilia Relief Fund Act, which provided money directly to people with bleeding disorders who were infected with HIV through the use of clotting factor concentrate. As strong supporters of the Affordable Care Act, we lobbied for the elimination of lifetime caps on health insurance policies and for access to quality, affordable health insurance for everyone with a bleeding disorder. We continuously advocate for network adequacy standards that would guarantee that insurance companies pay for services given at hemophilia treatment centers. We have worked to get more federal money for bleeding disorder research, the Centers for Disease Control and Prevention, and the hemophilia treatment centers. We have advocated for legislation that would raise awareness about the unique needs of women with bleeding disorders. The agency also works in coalition with other groups to focus on the needs of people infected with HIV and Hepatitis C.
Advocacy for people with bleeding disorders is not something we can do on our own. We need your help.
You can get involved in several ways.
First, sign up for the Hemophilia of Georgia newsletter. We can then notify you by e-mail of important advocacy issues and make it easy for you to contact your state and federal representatives.
Hemophilia of Georgia accompanies people with bleeding disorders and their family members on visits to elected officials at both the state and the national capitols. Each winter the National Hemophilia Foundation sponsors Washington Days and invites members of the Georgia bleeding disorder community to Washington, DC to meet people from across the country and to meet with their representatives in Congress. Hemophilia of Georgia also visits district offices and members of Georgia's General Assembly. If you are interested in scheduling a visit to the Georgia capitol to meet your representative, please email Nichelle Sims at email@example.com. We currently schedule visits Monday through Friday throughout the legislative session, which runs from January through March.
Finally, let us know your opinions. What issues do you think we should address? How can we best advocate for Georgians with bleeding disorders? Your voice is important - your vote counts.