2017 NHF Washington Days

“Save my care!” can be heard around the nation as millions of Americans voice their concerns about the newly released American Health Care Act (AHCA), which is the Republican plan to repeal and replace the Affordable Care Act (ACA). The proposed legislation includes a change in Medicaid funding that could negatively impact the bleeding disorder community.

During this time of sweeping political change and uncertainty in Congress, the National Hemophilia Foundation’s (NHF) annual Washington Days advocacy event could not have come at a better time. On March 8-10, NHF brought more than 480 volunteer advocates from 46 states to meet with legislators and staff to discuss maintaining key patient protections in the ACA, which was a record-breaking number of participants. Among the masses attending the annual event in Washington, DC, and donning red ties for March as Bleeding Disorders Awareness Month was our Hemophilia of Georgia (HoG) group which consisted of HoG employees Nichelle Sims and Jeff Cornett, HoG board members Linda and Dave, and Teresa, Holden, Debbie, Julia, Michelle, Vicky, Michael, and Anna - from HoG’s newly implemented Bleeding Disorder Advocates Program. We even had a very spirited 3½-year-old volunteer in our group who proudly sported his red bowtie in support of our community.

Upon our arrival in Washington, DC, our group attended the NHF training sessions on how to effectively present the issues to members of Congress and the power of your personal story. The following day, we went to Capitol Hill for a day of meetings with legislators and staffers. We asked our congressmen to keep several key patient protections in any healthcare legislation that might be introduced to replace the ACA:

• Maintain the elimination of lifetime and annual limits on essential health benefits.
• Maintain federal requirements for essential health benefits to ensure patient protections are meaningful.
• Maintain the Medicaid expansion, including the categorical eligibility for childless men and women and the enhanced federal funding for the expansion population.

Each of these policies work together to ensure that people with bleeding disorders and many others with high-cost, chronic conditions have access to adequate health insurance coverage.

Since we had such a large group, we split into two constituent groups to enable us to have more efficient meetings with different members of the Georgia congressional delegation. Most of our meetings were with congressional staffers, however, Representative Rob Woodall met with us for an hour between his floor votes. It is a rare treat to have a lengthy meeting with a congressman, so we took full advantage of the opportunity to share our personal stories and to thoroughly express what the ACA has done and means to our community and how we depend on adequate health insurance.

All the other meetings with staffers were pleasant and productive given that most of the staffers we have met with several times before and they are familiar with bleeding disorders. We hope the staffers will influence the congressmen to support legislation that is favorable to our community. We met with staffers from both Senators Johnny Isakson and David Perdue’s offices,  and in the House buildings we met with staffers from the offices of Representatives David Scott, Hank Johnson, Jody Hice, and Doug Collins.   

The meetings were casual, yet serious - conversations about the care needed for people with bleeding disorders. Teresa showed the legislators what one dose of clotting factor worth $7,000 looks like, and explained how a person with hemophilia can easily reach a lifetime cap at a young age given the high cost of clotting factor. Dave expressed how his daily life is impacted by caring for his young son with hemophilia who needs a weekly infusion. Holden discussed how receiving ongoing care from a treatment center is imperative to a good quality of life. Michelle shared how from a very young age she helped care for her younger brother with hemophilia and fervently learned through the years about his care and treatment options. The Georgia congressional delegation is supportive of our concerns and these annual meetings remind them of the important issues the bleeding disorder community faces and how critical their legislative support is.

It was an impactful trip and HoG’s advocates will continue to advocate and to strengthen relationships with legislators to protect the healthcare needs of the bleeding disorder community.