Three years ago, I attended a conference hosted by the World Federation of Hemophilia, the leading global non‐profit for haemophilia advocacy. The then President, Mark Skinner, made a plea for help to improve care for people with haemophilia in developing countries by closing the treatment gap with expanded donations of therapy.
I was struck by several stories of the hardships often faced by patients in the developing world, like one of a boy who had sustained a bleed after falling off his bike. The boy went to a clinic for treatment, but it only had a small supply of donated therapy, which was reserved for people who needed surgery or had life-threatening bleeds. With no treatment, the boy was bedridden for months while his body tried to recover.
Because medicine is so limited in many developing countries, the picture of living with haemophilia is bleak. Life for many patients is often associated with severe disability, isolation and pain. For the doctors, it is full of impossible choices about how to use what little therapy is available – and always wondering when more will come.
Historically, donations of haemophilia treatment have been made in un-planned amounts each year. While these donations are and continue to be important, it is difficult for health treatment centers and physicians to know when they’ll have therapy. In order for a shift to occur – for a predictable and sustainable haemophilia treatment supply to be made available to developing countries, it’s important to think differently about the humanitarian aid model. And as we plan ahead and think about access to treatment of all patients, we must make sure that we take into account the patients in developing countries.
We were inspired by the call to action issued by the WFH in 2012 and the need to address this treatment gap in the developing world. Even before we had products commercially available to treat haemophilia, we believed we could help address the challenge in developing countries by joining the existing humanitarian aid effort and applying our manufacturing capacity and expertise in supplying medicines around the world to this problem. First, along with our collaborators at Sobi, we made a commitment to donate 1 billion IUs of our factor therapy to humanitarian aid programmes in the developing world over the next 10 years, starting with up to 500 million IUs through the WFH’s Humanitarian Aid Program. Then we focused on supporting the infrastructure needed to ensure secure, sustainable and reliable product delivery to these countries.
Biogen and Sobi have been fortunate to collaborate with the WFH, an organisation that for the last 20 years has built the largest supply channel of donated hsemophilia products in the world. Now, through this unique coalition, we have together built a stronger humanitarian aid infrastructure to get more therapy to patients who need it.
With a steadier, more reliable flow of medicine, doctors can begin treating joint bleeds on a regular basis and perform corrective surgeries to save people from disability and pain. They may even be able to administer prophylaxis to children.
As the arrival of the first of these donations begins, we hope this effort will be just the first step in an ongoing commitment from the global hsemophilia community to expand our collective efforts. Only through collaboration can we build a sustainable model for humanitarian aid in the developing world so that, one day, people with hsemophilia, can receive the care they need regardless of where they live.