Obtaining the federal designation of March as Bleeding Disorders Awareness Month was the cornerstone of the National Hemophilia Foundation’s (NHF’s) 2016 Washington Days advocacy agenda. NHF worked with the US Department of Health and Human Services (HHS) to get a federal designation for March as Bleeding Disorders Awareness Month in perpetuity. But a federal designation doesn’t prevent individual states from applying to their legislators for recognition of the month, something several chapters capitalized on in 2016.
“When a chapter approaches legislators asking for March to be recognized as Bleeding Disorders Awareness Month, it’s actually a smart move from an advocacy perspective,” says Nathan Schaefer, senior policy advisor for NHF. The chapter can use the request to build relationships between legislators, the chapter and the community, he adds. “For the legislator, it’s also smart because it builds goodwill and doesn’t cost the taxpayers anything.”
“It means so much to the families,” says Bob Robinson, executive director of Bleeding Disorders Alliance Illinois, one of the chapters in four states that petitioned to get an official designation. Kentucky and Georgia also had their legislative bodies recognize March as Bleeding Disorders Awareness Month. Hemophilia of South Carolina got its governor to issue an official proclamation designating the month.
“To see a governor, state representative or senator stand up for them, to show those new family members that they care can be very powerful,” says Robinson.
NHF’s public policy department regularly travels to chapters to assist in building their local advocacy programs, including on-the-ground assistance for their state legislative days. Schaefer attended the legislative day that was held by the Tennessee Hemophilia and Bleeding Disorders Foundation legislative day. The chapter hadn’t held a legislative day for some time. For many families, it was their first time advocating on behalf of their local community. Although the Tennessee chapter’s experience was more of an education day, Schaefer stressed that such visits are still important. They bring familiarity of the issues of the community to the legislator. “With each visit, the legislators start to recognize your story and your family,” says Schaefer. “That can have tremendous benefit, particularly if there’s a budget line or a piece of legislation in the future that might affect the community.”
The Tennessee families also promoted the Red Tie Challenge during their advocacy day. It made the visits for the families a little more fun, but also more memorable for the legislators. “Maybe they’ll remember a couple of cute little kids who wore red ties in their office one day and told them about living with a bleeding disorder,” Schaefer says. “That can be sufficient to protect a program, a treatment center or some other resource that is important to us.”
Building relationships with legislators is key for any chapter’s advocacy program, confirms Robinson. His chapter capitalizes on Bleeding Disorders Awareness Month long after March is over. “We use it as a way to invite representatives to our events,” Robinson says. “Every time we see a legislator who was involved with the designation, we take the opportunity to thank him or her.”
The Red Tie Challenge and Bleeding Disorders Awareness Month will continue to help chapters achieve their advocacy goals in the years ahead, whether the chapter has a robust advocacy program or is just beginning to build one.
“Each time a family comes to the statehouse in red ties, they become a little more memorable,” says Schaefer. “And each time they start the conversation about the bleeding disorders community, the community gets a little stronger.”