In 2016, the New England Bleeding Disorders Advocacy Coalition (NEBDAC) formed to address a key missing infrastructure: a collaborative advocacy effort across all six states. This is a joint effort between the New England Hemophilia Association (NEHA), Hemophilia Alliance of Maine (HAM), and Connecticut Hemophilia Society (CHS).
Phase 1 - Collaboration. In April of 2016 a New England Leadership Summit was held in
Portsmouth, NH that brought together current and future leaders of the region to form a collaborative partnership to develop larger, longer, transformative and sustainable projects and programs. During that event, two areas were identified and given high level priority:
- Regular meetings among the Executive Directors (EDs) of the three chapters
- Form a collaborative advocacy coalition
Phase 2 - Cooperation. As the next phase to form a collaborative advocacy coalition,
a stakeholder meeting on October 12, 2016 in Dedham, MA was organized to bring together the
Executive Directors, Board Presidents, and advocacy leaders from NEHA, HAM, CHS, policy advisors from National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), and industry state-based government affairs liaison. From this meeting, the NEBDAC formed. Each Executive Director from NEHA, HAM, and CHS appointed two state lead ambassadors to represent the New England region. In addition, NHF, HFA, and two representatives from the Hemophilia Treatment Centers (HTCs) sit on this coalition. Lead ambassadors monitor legislative bills, petition their respective states on specific requests (recognizing March as Bleeding Disorders Awareness Month is a recent example), participate in monthly calls, etc.
Phase 3 - Purpose and Mission. The mission of NEBDAC is “to empower our community with tools, training, and resources to become an effective network that will champion bleeding disorder quality of life initiatives in the New England states - Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont.” Currently the coalition functions as a responsive action network not as an organization creating policy.
Become an ambassador of NEBDAC! For more information, please email Joe Zamboni, NEBDAC Advocacy Coordinator at: JZamboni@nehemophilia.org.
Accomplishments (January to December 2017)
- In January, the Coalition asked community members to submit letters about HB 443, a bill introduced in the New Hampshire legislature that would prohibit drug manufacturers from assisting patients with their insurance co-pays. With the stories submitted, the Coalition gave compelling testimony before the legislative committee considering the bill. Due to these efforts, the bill was stopped. During one of the hearings, a legislator stood up and said, “My phone won’t stop ringing from these hemophilia patients. This bill can’t be good!”
- Supported HB 6009, a Connecticut bill to establish a Rare Disease Advisory Council.
- Joined several step therapy coalitions with other chronic disease groups in Rhode Island, Massachusetts, and Maine. These modifications to legislation will prohibit insurance companies from using practices which require the least expensive drug in any class to be prescribed to a patient first, even if a patient’s physician believes a different therapy is medically in the best interest for their condition.
- Supported HB 5636, a Rhode Island House Bill, an Act Relating to Insurance which addresses step therapy protocols.
- Prepared letter to Vermont advocating for the continued practice of allowing patient access to all FDA-approved therapies available to treat hemophilia and related bleeding disorders.
- Coordinated an opposition with multiple calls, letters, action alert emails to community members to contact their federal elected officials.
- Over 60 members of the Massachusetts bleeding disorders community met at the State House in June to discuss step therapy legislation (HB 492/SB 551). Over the summer, state leads from Maine, New Hampshire, Rhode Island, and Vermont all had meetings setup with elected officials to raise awareness or about legislation affecting the community.
- In March of 2017, for the first time ever, all six New England states officially declared March 2017 as Bleeding Disorders Awareness Month! Community and press events were held at each state capital in New England. This led to new relationships with elected officials and their staff, and helped to raise awareness with the general public. Articles were published in the following newspapers about these efforts:
- Boston Associated Press
- Boston Globe
- Warwick Beacon
- Southern Rhode Island Newspapers
- Shelburne News
- The News & Sentinel
- Lake Champlain Islander
- The Concord Monitor
- In March, 42 members of the New England bleeding disorders community attended NHF’s Washington Days representing all six states in New England.
- Organized a Spring 2017 Ba-CON (Bleeding disorders Advocacy CONvention) in Concord, NH. This conference brought together patients throughout New England and the NEBDAC state leads to focus solely on legislation affecting New Englanders, and tools on how to advocate. This was the first advocacy conference of its kind in the national bleeding disorders community!
- Partnered with NHF and HFA to send New Englanders to Washington, DC, to advocate to their elected officials during the debate to repeal and replace the Affordable Care Act (ACA). Representing New England during these meetings were: Shai and Ziva Mann (MA), David Gardner (RI), and Jill Packard, Victoria Kuhn, and Terry Rice (ME). 15-year-old Shai documented his trip and made several videos about his experience being a young advocate in Washington, DC.