New York City Hemophilia Chapter is a member organization of the New York State Bleeding Disorders Coalition, a partnership of not-for-profit organizations dedicated to public advocacy on behalf of people affected by bleeding disorders in New York State.

The Coalition includes patient-consumer community organizations and hemophilia treatment centers serving New York State and several regional/national bleeding disorders education and advocacy organizations.

Albany Days

As a member chapter of the New York State Bleeding Disorders Coalition, we unite with other chapters in Albany annually to advocate for the needs of the bleeding disorders community. Individuals and families are encouraged to participate in this legislative day.

Prior to the session, attendees receive training and become more familiar with speaking about the issues. They then meet with their legislators (or representatives) to express their views. Throughout the event, families learn more about the legislative process and meet other families navigating through the same health care issues.

In 2018, our community advocates met over 40 legislative offices in support of a bill reforming the 2011 Anti-Mandatory Mail Order law. The bill as written unfortunately contains a loophole allowing health insurance companies and Pharmacy Benefit Managers to force patients on certain medications to use mail order pharmacies for medications, which doesn’t always work for patients. The advocates also succeeded in passing a resolution declaring March as bleeding disorders awareness month.

More information will be released on this year’s Albany Days soon.

Washington Days

Washington Days is a unique, annual opportunity from the National Hemophilia Foundation for local bleeding disorder chapters to lobby nationally for issues important to the bleeding disorder and chronic care communities.

Participants have the opportunity to meet face-to-face with lawmakers and staff who shape national healthcare policy, and become more informed on critical issues that affect continued access to quality care and learn effective grassroots advocacy techniques. Last year’s Washington Days had more than 500 volunteer advocates from 47 states that met with legislators and staff to discuss maintaining key patient protections in the Affordable Care Act (ACA).

More information about this year’s Washington Days will be released soon.

Contact Lindsay Cox, Advocacy Coordinator, for more information about our Advocacy program or to get involved.

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