Envisioning “Treatment for All” on World Hemophilia Day
Recent news of the potential for gene therapy in treating bleeding disorders created great excitement among the bleeding disorders community in the US and other developed nations.
But the fact remains that 75 percent of people with hemophilia (PWH) around the world still receive inadequate treatment or have no access to treatment at all. And that is why the World Federation of Hemophilia (WFH) and several of its national member organizations (NMOs), including NHF, have mobilized to reduce this disparity. In fact, through its Humanitarian Aid Program, WFH has provided more than 462 million units of factor— donated by the pharmaceutical industry—that has helped over 100,000 PWH in 90 nations.
NHF, along with several of its chapters, provides financial support to cover some of the cost of storage and distribution of this humanitarian factor, which is vital. But NHF’s work with WFH goes well beyond that and I believe the spirit of our global work is best captured in the 2018 World Hemophilia Day theme: “Sharing Knowledge Makes Us Stronger.”
“Sharing knowledge” is at the core of WFH’s four-year, Hemophilia Organization Twinning Program, which, since its inception 20 years ago, has forged 215 partnerships between established bleeding disorders patient advocacy organizations and emerging ones in 113 developing countries. From 2013 to 2016, NHF “twinned” with the Haemophilia Foundation of Nigeria, working closely with Executive Director Megan Adediran to literally build a national organization from the ground up. NHF shared its expertise, resources and best practices aimed at: generating awareness; developing and delivering education to patients, family members and healthcare providers; executing fundraising campaigns; and beyond. As a result, bleeding disorders are now on the nation’s health radar and the Haemophilia Foundation of Nigeria is working with the government to formally recognize hemophilia as a disorder. Meanwhile, the Foundation has doubled the number of patients diagnosed and significantly increased their educational activities.
This year, NHF became one of only two NMOs chosen by WFH to participate in its new Youth Group Twinning Pilot Project. The project aims to strengthen youth groups within emerging advocacy organizations and, in so doing, foster the next generation of leaders within the bleeding disorders community.
Over the next two years, NHF will “twin” with Hemophilia Federation India to help create a youth development program using NHF’s National Youth Leadership Initiative (NYLI) as a model. NYLI is a three-year program that provides youth ages 18-24 in the bleeding disorders community with leadership opportunities to encourage their personal growth, affect change, and positively influence others within and beyond the community. We have already begun working with Hemophilia Federation India to engage and train youth throughout the country via four meetings, and to develop a fundraising strategy and capability to sustain this and other initiatives.
Separate from WFH’s pilot project, NHF was asked by the Korea Hemophilia Organization (KOHEM) to partner with them on a project to create a youth development program appropriate to their culture. We agreed and have already discovered that—as with our Nigerian and Indian “twinning” experiences—the learning occurring is definitely a two-way street. Most important, the opportunity to share resources and tools with emerging nations has empowered us to ensure all community members live happy, healthy and productive lives is priceless.
Access to bleeding disorders treatment shouldn’t be dependent on where you happen to live in the world, which is why NHF is doing its part to ensure WFH’s vision of “treatment for all” one day becomes a reality.