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Becoming an Advocate

The more you learn about hemophilia and insurance, the more effectively you may be able to advocate for your rights. Here is some information to help you stay up-to-date on legislative and advocacy efforts related to hemophilia coverage.

Become Your Own Best Advocate

You can be your own best advocate on both an individual and a community level. The following Web sites will help you to learn more about how you can get involved in local and national advocacy efforts:

• The National Hemophilia Foundation (NHF): The NHF’s official Web site features extensive hemophilia-related information, support, and resources. The NHF is a comprehensive information source for people and families living with hemophilia. To learn more, click here.
• The Hemophilia Federation of America: The HFA is a national, nonprofit advocacy organization established for people with bleeding disorders and their families. Among other activities, HFA sponsors educational and fundraising programs, monitors actions of the government and industry, and promotes awareness of the bleeding disorders community. This site also offers links for parents to subscribe to various mailing lists and support/discussion groups. To learn more, click here.
• Plasma Protein Therapeutics Association (PPTA): As the global representative for the plasma collection and therapeutics industry, PPTA works cooperatively with patient groups, policymakers, regulatory agencies, and other stakeholders to address critical issues that impact the industry and patients who depend on plasma protein therapeutics. PPTA's strength lies in its membership. To learn more, click here.
• The Henry J. Kaiser Foundation: The Henry J. Kaiser Family Foundation is a nonprofit, private operating foundation focusing on the major healthcare issues facing the nation. The Foundation is an independent voice and source of facts and analysis for policymakers, the media, the healthcare community, and the general public. The Foundation is not associated with Kaiser Permanente or Kaiser Industries. To learn more, click here.
• The Committee of Ten Thousand (COTT): COTT is an advocacy and outreach organization dedicated to helping members of the HIV/AIDS community live long, active lives. The majority of its members are hemophilia patients who contracted HIV or AIDS from tainted blood products. For more information, visit the COTT Web site.

At a national level, the NHF sponsors an annual legislative advocacy conference, called Washington Days. You can join others at this conference to request support for increased funding for treatment centers, the elimination of lifetime caps on private health insurance policies, and adequate Medicare payment for clotting factor. Visit the Advocacy Center on the NHF Web site to learn more about Washington Days.

Learn how you can make a difference in 5 minutes by visiting the HFA’s online legislative action center. This site will help to educate you about your elected officials, current issues and legislation, election and candidates, and the media. Ask your treatment center or chapter about an interactive Consumer Advocacy Workshop sponsored by Baxter.

You can also join your local chapter’s government affairs committee, or start one.

For additional tips on managing your insurance costs, contact your local treatment center.