Against a backdrop of a possible repeal of the Affordable Care Act (ACA), the National Hemophilia Foundation’s (NHF) Washington Days advocacy event drew unprecedented numbers. On March 8–10, more than 480 volunteer advocates from across the country came to Washington, DC, motivated by the national conversation on access to healthcare and insurance.
NHF’s advocacy focused solely on the American Health Care Act (AHCA), the healthcare bill proposed by House Republican leaders, which was released the week of Washington Days. Volunteer advocates asked their representatives to keep several patient protections in any healthcare legislation that might be introduced to replace the ACA: to maintain the elimination of lifetime and annual limits on essential health benefits; maintain federal requirements to essential health benefits to ensure patient protections are meaningful; and to maintain the Medicaid expansion, including the categorical eligibility for childless men and women and the enhanced federal funding for the expansion population.
While the number of attendees was groundbreaking for NHF, volunteer advocates could still feel small compared with the vast machinery of Washington. However, retired Sen. Byron Dorgan, D-N.D., assured attendees that their voices did indeed matter. Closing out the training Wednesday night with a rousing speech, he extolled the impact of explaining to lawmakers the personal effect of potential legislation. “The six most powerful words any senator can hear are ‘Let me tell you a story,’” he began, before illustrating how it was the persistence of one woman, Brenda Neubauer, who has a son with hemophilia, that persuaded him to fight to include the elimination of lifetime and annual limits in the ACA.
On Thursday, advocates took to the Hill, wearing their red ties as a symbol of the bleeding disorders community. The advocates participated in more than 250 meetings with legislators and staff from both sides of the aisle.
The efforts didn’t end when Washington Days was over. On Thursday, March 22, reports began circulating that AHCA had changed to repeal the current ACA definition of the essential health benefits (EHBs). This change could render the ban on lifetime caps meaningless. Further, the AHCA’s Medicaid policies could lead to many people in the bleeding disorders community losing their coverage as states would limit benefits, could impose higher cost-sharing or reduce eligibility. The vote in the House was scheduled to take place Friday, March 23. It was time once again to ask the bleeding disorders community to act.
NHF sent a letter to every member of the House of Representatives, detailing how the bill would adversely affect the bleeding disorders community. It also e-mailed Washington Days attendees, asking them to contact the legislators or staff members they had met with to ask them to vote no on the bill. An e-mail blast and a concentrated social media push encouraged all members of the community to call their representative and explain why they wanted them to vote no on the bill.
The bill never reached a vote. Speaker Paul Ryan, R-Wis., pulled the bill March 23, with no immediate plans to schedule another vote on healthcare reform legislation.
“We weren’t the only organization pushing a grassroots effort to oppose this bill,” said Michelle Rice, senior vice president of external affairs for NHF. But for Rice, the satisfaction wasn’t just in the pulling of the bill. “We made sure our community had the information, tools and skills to mobilize when it looked like their healthcare was being threatened.” That is an advocacy victory.