Along with Swedish healthcare firm Sobi and the World Federation of Hemophilia, the Boston-based biotech company Biogen has pledged to donate up to a billion international units (IUs) of clotting factor therapy for people with hemophilia in developing countries.
The treatment for hemophilia can be incredibly costly - it can run upwards of $100,000 annually for people in the U.S. For those with hemophilia in Africa, treatment can be hard to come by and even the diagnosis of the disorder doesn't always happen.
John Cox, vice president of Biogen, and Megan Adediran, president of the Hemophilia Foundation of Nigeria, join Here & Now's Robin Young to discuss how to treat hemophilia in the developing world. Both of Adediran's sons have hemophilia.
On getting medication to developing countries like Nigeria
Adediran: "As much as you have to worry about bleeds, in this part of the world you have to worry about the medication. They are not readily available; when I had my first son 19 years ago, medications were not even available at all in the country. My son depended on whole blood transfusions. In his first eight years of life he had seven blood transfusions. Gradually we started getting donations, after I started a foundation. Still that is not enough - I still have to worry about when the donations are not enough to go around to every patient in the country."
Cox: "It’s really something, there’s so many different aspects. First of all you’ve got to think about how you’re going to package these types of products. They have to be kept safe and of high quality, so they have to be stored properly, shipped properly, properly be accepted through customs in those parts of the world. They have to be received and then stored again properly. So the entire chain of management or custody of the product, all of that has to be figured out."
On hemophilia being an “orphan disease”
Adediran: “The problem I always have, what I try to prove to people, as much as we think hemophilia is not common, it’s actually more common than we think, if we are actually diagnosed. In my country, with the population and the statistics of hemophilia, we should have about 10,000 people with hemophilia; we’ve got just about 200 in our records. That represents a very small population compared to the supposed number. A lot have died undiagnosed. So as much as it is not a disorder that is so common, I believe one life is worth every effort. It’s not easy bringing into this world one life, and it wouldn’t be justifiable for us to just ignore one life to die. Here we’re not talking about one life, we’re talking about 400,000 people around the world living with hemophilia. That number is large enough for us to think about, not just about the profit or the money we’re expending to keep this life.”
Where is the answer?
Adediran: “It’s not just about the companies now. The answer should also be about our governments. If governments around the world begin to take hemophilia as a public health concern, they will be able to advocate with the companies. But because governments don’t see hemophilia as public health concern, then the companies are not seeing themselves as they are doing anything for public health. When governments begin sitting with companies, and let them know the importance of what it means to their citizens, those companies too will be able to think about it and go beyond the issue of the profit.”
Cox: “These types of drugs, you know, it takes so much science and effort and years of development. Trying to get a drug that’s for a rare disease like hemophilia to patients in Africa, you have to start first of all with patients that aren’t even diagnosed. So you really have to talk about identifying patients to start, then you have the challenge of getting the drug to them in those parts of the world. This is a major donation program for us. It has been quite a learning experience. We announced even before we introduced these new drugs that we would donate and commit a billion international units of drug – which is a huge amount of drug – to the development world. And we would do that in partnership with the World Federation of Hemophilia, which is an organization who has been trying to go to different parts of the world and address the gap in treatment and identification we just talked about."
This segment aired on October 23, 2015.
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