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Bioverativ and Swedish Orphan Biovitrum (Sobi) are working to help transform the humanitarian aid model for people with hemophilia in the developing world.

Transforming care in the developing world

Humanitarian Aid

In the developing world, a vast majority of people with hemophilia have limited or no access to diagnosis and treatment. People with severe hemophilia in these countries often don’t survive to adulthood due to lack of treatment.

Along with the World Federation of Hemophilia and Swedish Orphan Biovitrum AB (publ) (SobiTM), our vision is that all people with hemophilia can receive the treatment they need regardless of where they live.

To take a step toward that vision, in 2014, Bioverativ and Sobi committed to produce and donate up to one billion international units (IUs) of clotting factor for humanitarian use, with up to 500 million IUs being donated to the World Federation of Hemophilia over five years. 

The donation, which is the largest single donation of its kind, is already making a life-changing impact for people with hemophilia in developing countries, including:

  • Treating over 12,300 reported patients in 41 countries in 2016
  • Treating nearly 16,000 acute bleeds, more than 790 of which were life-saving 
  • Enabling 795 life and limb-saving surgeries in 2016. That number has risen to over 1,000 as of the end of March 2017.
  • Doubling the percentage of children receiving treatment from 14 to 28 percent. 

This donation is the largest of its kind and will substantially increase the amount of hemophilia therapy available in the developing world. It is designed to help enable a predictable, sustained humanitarian supply of factor therapy to transform the way care is delivered in these countries.

For lasting change to become a reality, it will require an expansion of our collective effort across the global hemophilia community. We encourage others to join us in creating a sustainable model for humanitarian support.

Bioverativ Perspective

Closing the Treatment Gap in the Developing World

By John G. Cox, CEO >

Three years ago, I attended a conference hosted by the World Federation of Hemophilia, the leading global non‐profit for hemophilia advocacy. The then President, Mark Skinner, made a plea for help to improve care for people with hemophilia 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 hemophilia 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 hemophilia 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 hemophilia 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 hemophilia, 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 programs 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 organization that for the last 20 years has built the largest supply channel of donated hemophilia 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 hemophilia 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 hemophilia, can receive the care they need regardless of where they live.

 

 

 

Working to close the treatment gap in the developing world

 

The WFH Humanitarian Aid Program: Global Responsibility of Ensuring Treatment for All