As our community begins to feel the impact of healthcare reform, and public and private payers continue to examine ways to control healthcare costs, the need for advocacy on the state level is becoming increasingly more important. To that end, NHF is happy to announce that chapters in a number of states that have not traditionally had formal advocacy programs, have begun formalizing a structure for advocacy, either through advocacy committees or coalitions.
Last summer, the Florida Hemophilia Association and the Hemophilia Foundation of Greater Florida participated with stakeholders in a strategic advocacy planning session, forming the Bleeding Disorders Coalition of Florida (BDCF), and began developing a formal advocacy strategy plan. The BDCF hosted the first Florida State Advocacy Day on March 20, 2014. The event included approximately 20 volunteers and chapter staff who participated in more than 20 scheduled visits and numerous drop-in visits with Florida legislators and staff. The day was a success and allowed the coalition to begin the process of developing an important dialogue between our community and key Florida decision-makers.
The Colorado and Oregon chapters, in conjunction with NHF, also hosted strategic advocacy planning sessions in which they developed key issues and strategies for a long-term advocacy program. As a result of its strategic planning session, the Colorado chapter has joined the Colorado Consumer Health Initiative (CCHI) and the Chronic Care Collaborative, which has provided valuable insight and support to the advocacy committee. Amy Board, chapter Executive Director, now sits on the work group addressing Colorado’s formulary issues. Her presence will provide a much-needed voice to ensure the needs of the community are understood.
The Oregon chapter had a tremendous turnout of volunteers and stakeholders at its recent strategic planning meeting. The group identified organizations with which it may form a coalition, and key issues facing Oregonians with hemophilia or related bleeding disorders that they will develop into formal action issues as the year progresses. Oregon plans to host its first Advocacy Day during the 2015 Legislative Session.
Finally, NHF provided an advocacy training webinar and participated in a town hall-style meeting with the Iowa chapter and an Iowa state representative. The meeting started the important process of educating decision-makers about the needs of the bleeding disorders community. Further, the chapter and volunteers were provided valuable insight into the type of information that will help legislative members make decisions that will benefit our community.
We would like to thank our industry sponsors, Novo Nordisk, Pfizer and CSL Behring, for providing valuable support for these emerging programs and all of the various stakeholders who participated in making these events successful for the bleeding disorders community.
If your chapter is interested in formalizing a state advocacy program, please contact NHF’s Public Policy Team.
