The National Hemophilia Foundation (NHF) has counterparts across the country advocating for the needs of patients with blood disorders ranging from Cooley’s anemia and hemophilia to deep-vein thrombosis. Although all these groups are served by the Centers for Disease Control and Prevention’s (CDC’s) National Center on Birth Defects and Developmental Disabilities, prior to 2010 they had not formally met.
At the first National Conference on Blood Disorders in Public Health, held March 9–11 in Atlanta, these blood disorder groups gathered to devise public health strategies to prevent complications and provide awareness. They also shared ideas and resources.
“The purpose of the meeting was to elevate blood disorders to a national health policy level,” says Val Bias, NHF CEO. For instance, pregnancy and childbirth can be influenced by a number of blood disorders. “Besides hemophilia and von Willebrand disease, thalassemia, sickle cell anemia, even thrombophilia—all have complicating factors related to birth,” he says. “That’s why there needs to be more of a national awareness of blood disorders in general.” One session, “Impact of Blood Disorders on Reproductive Outcomes,” was devoted to that issue.
At the conference, “Making the Connection,” more than 350 people from various blood disorder groups attended sessions covering blood safety, ways to measure patients’ quality of life, health disparities, life stage transitions, public health messages and disaster preparedness.
Developing Resources for Consumers
Disaster preparedness was another topic of interest at the conference. When back-to-back hurricanes struck the US in 2005, NHF worked with hemophilia treatment center and chapter staff to formulate plans for patient access to factor, their physicians and other members of their healthcare team. “Our emergency preparedness wallet-size readiness cards, the family checklist, Go-Bags and at-a-glance sheets are tangible materials that are readily adaptable,” says Jennifer Crawford, NHF director of education, who gave a presentation on preparedness at the conference. “We’ve boiled it down to three main messages—plan, communicate and practice.”
Another message Crawford and Neil Frick, NHF vice president for research and medical information, shared at the conference was the importance of identifying life stages and the transitions that occur at each. “I spoke on the transition guidelines that MASAC [NHF’s Medical and Scientific Advisory Council] put together,” Frick says. “They are suggested goals for medical care and psychosocial development that serve as a guide as a child with a bleeding disorder goes through each life stage.” For children with hemophilia, this could mean learning to self-infuse at a certain age, Frick says. For other patient groups, it could be some other rite of passage related to their disorder.
Peer-to-peer mentoring was another topic Crawford covered. “Most disorders don’t have a Steps for Living program,” she says, referring to NHF’s new online life stages curriculum being developed to follow children from birth through age 25. “Hemophilia is unique in that we have so many resources.”
One of those resources is HANDI, NHF’s information resource center. “It was interesting for attendees to learn how NHF went about collecting information and putting it into a library of resources that can be shared,” says Frick, whose presentation on HANDI sparked questions. “They wanted to hear more about developing publications and how to evaluate a resource center to find out how useful it is to constituents.”
A Community Leader
NHF’s primary role at the conference was to lead by example, sharing best practices in many areas. “It was important for NHF to be there as a leader in programs, a leader in advocacy, a leader in blood safety,” Crawford says. NHF has also been out front in amassing data. “The CDC wants to review the data collected through the Universal Data Collection system for the last decade and create templates for collecting data for each disease group,” Bias says.
During the conference, each patient group summarized its activities. “It was important to hear about programming and public-health issues from other disease states,” Frick says. “It was a beginning step in deciding how we can move forward.”
For NHF, moving forward means more than just being a partner. It means being a facilitator, too. “We are considering bringing those groups together to discuss joint issues we can work on—blood safety, research, advocacy and heightening our visibility as a group,” Bias says. With that kind of agenda, the blood disorders patient group partnership has a lot of potential.
The conference was sponsored by the US Department of Health and Human Services; the CDC; the Health Resources and Services Administration; the National Heart, Lung, and Blood Institute; the American Society of Hematology; and Hemophilia of Georgia.