In recognition of World Hemophilia Day 2018, the biopharmaceutical company Bioverativ is sharing the stories of people with hemophilia in the developing world to highlight the life-changing potential of adequate treatment.
In honor of this year’s theme, “Sharing Knowledge Makes Us Stronger,” Bioverativ will collaborate with members of the hemophilia community to help raise awareness and encourage support for those living with a bleeding disorder.
In addition to sharing the stories of hemophilia patients in the developing world, Bioverativ will collaborate with advocacy groups involved in the “Light it Up Red” campaign, which illuminates public landmarks across the globe, and co-host several local events that include educational and science-focused family activities in partnership with U.S. advocates.
For Bioverativ, the connection to the developing world stems from an agreement established in 2014 with Swedish Orphan Biovitrum (Sobi), in which the two agreed to donate up to one billion international units (IUs) of clotting factor over 10 years.
The pledge included the donation of up to 500 million IUs to the World Federation of Hemophilia (WFH) Humanitarian Aid Program over a period of five years. The goal was to help change the way hemophilia patients are cared for in the developing world.
Since donations began in 2015, more than 15,000 people with hemophilia in 40 countries have already been treated with over 260 million IUs of medicine donated by the two partners to the WFH Humanitarian Aid Program.
So far, these donations nearly tripled the percentage of children receiving treatment (from 14 to 39 percent); they provided preventive treatment to nearly 1,200 people (of whom two-thirds are children younger than 10); they have allowed for the treatment of about 79,500 acute bleeds; and they have enabled more than 1,500 surgeries.
“I have witnessed the profound impact that donated factor has on those living with hemophilia in developing countries, and we thank Bioverativ and Sobi for their visionary leadership,” Alain Weill, WFH president, said in a press release. “Whether for acute bleeds or prophylactic treatment, or to enable necessary surgeries, these donations are life-changing for patients and their families.”
“We believe that all people with hemophilia should have predictable and sustainable access to the treatment they need, regardless of where they live,” said John Cox, Bioverativ’s chief executive officer. “Bioverativ is proud to support the efforts of the World Federation of Hemophilia to raise the standard of care and improve outcomes for those most in need in developing countries.”
The most limiting challenges with hemophilia management in developing countries are poor awareness, inadequate diagnostic facilities, and scarce factor concentrates for therapy. The priorities in establishing services for hemophilia include training care providers, setting up care centers, initiating registries, educating patients and their families about the condition, and providing low-cost factor concentrates, among others.
In countries that receive little or no support from the government, such as India, organizations like the Hemophilia Federation of India is fully responsible for managing the treatment of hemophilia, along with other institutions. But different models exist. For 20 years, researchers have been searching for best practices across the developing world to providing hemophilia services. That work also contributes to improving the outcomes of hemophilia treatment in these countries.