2018 NHF Washington Days

The National Hemophilia Foundation’s (NHF) Washington Days were held on March 7-9, 2018, and more than 500 advocates came to Washington, D.C. from across the country. This annual trip allows the bleeding disorder community a chance to speak on the health policy issues being debated in Congress. This year, Hemophilia of Georgia took a group to represent the bleeding disorder community of Georgia, including HoG staff members Nichelle Sims and Julie Hayman, HoG board member Linda and her husband Peter, HoG junior board member Sheldon, and nine trained advocates from HoG’s Bleeding Disorder Advocacy Program: Debbie, Julia, Michelle, Teresa, Jessica, Vicky, Michael, Rhonda, and Stephen. We also had two well-spoken junior advocates in our group. March is Bleeding Disorders Awareness Month so everyone wore red ties to show support for the bleeding disorder community.

On Thursday, we went to Capitol Hill and split up in three constituent groups to meet with different members of the Georgia Congressional delegation. Usually, our meetings are with congressional staffers; however, Representative Rob Woodall and Representative Jody Hice took a few minutes to speak with our group about our health care concerns. We also met with both Senator Johnny Isakson’s and David Perdue’s offices; and in the House buildings we met with staffers from the offices of Representatives Karen Handel, Hank Johnson, David Scott, and John Lewis. All the meetings with staffers were friendly and enlightening. Several of the staffers were new to their roles, so we hadn’t met them on prior visits. The new staffers were eager to learn about bleeding disorders through personal stories and to discuss our health care concerns.

While the Affordable Care Act (ACA) and the essential health benefits were not repealed earlier this year, there was still much to discuss with the Georgia Representatives. This year, we had two main requests for the members of Congress:

• Maintain access to care.  Support federal hemophilia programs at the Centers for Disease Control and Prevention (CDC) and Health Resources and Services Administration (HRSA) to ensure access to care for people with bleeding disorders.
  • HRSA Maternal and Child Health Bureau (MCHB) Hemophilia Program, which provides funding to Hemophilia Treatment Centers and allows participation in the 340B Program, which supports comprehensive care.
  • CDC Division of Blood Disorders, which supports critical surveillance and prevention activities.
• Maintain access to insurance.  Support federal standards for public and private insurance so that patient protections and access to insurance is maintained.
  • For private plans: maintain current pre-existing conditions policies, the ban on lifetime and annual limits, and federal standards for essential health benefits.
  • For Medicaid: maintain the Medicaid expansion and oppose state waivers that could threaten meaningful coverage.

Without adequate access to care and insurance, people with bleeding disorders cannot live healthy and productive lives. The Georgia Congressional delegation is supportive of our concerns and these annual meetings provide a reminder of the important issues the bleeding disorder community faces and how critical their legislative support is on these health care issues. We will follow up with all elected officials and work to gain support from some members and continue partnerships with the other members who currently support our efforts. It was a very meaningful and productive trip full of congressional visits and sightseeing, and, back at home, HoG’s advocates will continue advocacy efforts and strengthen relationships with legislators to address the health care needs of the bleeding disorder community.

HoG advocates on the steps of the Capitol

HoG advocates at the Capitol

HoG advocates with Rep Jody Hice

HoG advocates with Rep Rob Woodall

HoG advocates in John Lewis' office