Tackling hemophilia in Uganda: Using “older” and “better” technology

by Ed Conway, MD, PhD

Director of the Centre for Blood Research, University of British Columbia

Vancouver, Canada

For the past 2 years, I have been going to Uganda twice a year, offering lectures and workshops at the University of Makerere’s medical program and at the Fred Hutch Cancer Centre.

I also work closely with their hemophilia program. The statistics tell the story. Currently, out of a population of approximately 38 million people, there are only 120 boys who have been diagnosed with hemophilia. In Canada, with a similar population, there are over 4,000 patients, almost all identified when young children. The numbers should be the same. But, because of limited resources, thousands of children go undiagnosed and untreated, suffering from recurrent bleeds, disabling arthritis, and/or dying at a young age.

But there are affordable solutions that could make a real difference. And there is an amazing team of dedicated professionals ready to make this happen.

I had the good fortune to meet Agnes Kisakye, the Executive Secretary of the Hemophilia Foundation of Uganda. With no government support, Agnes travels around the country, leading awareness campaigns, identifying patients and facilitating travel to the clinic in Kampala. There, she has assembled and leads a multidisciplinary team of hematologists, nurses and physiotherapists. Many received training from the "twin" hemophilia centre in the UK, the Great Ormond Street Hospital NHS Trust, led by nurse Kate Khair, a major supporter of Agnes' endeavours.

One of the main reasons why children go undiagnosed is the lack of equipment and reagents needed to make the diagnosis and to monitor treatment. This requires a simple blood clotting test that is done routinely here in Canada, more than a million times a year. Unfortunately, the automated machines that we use, are not available for the Uganda hemophilia program.

A better solution for Uganda is to use a coagulation analyser - a simpler, semi-manual machine that was the standard in clinical labs in N. America and Europe more than 20 years ago. The analyser is portable, durable and easy to use. And the reagents are generic, inexpensive, and widely available…. a perfect solution!

The machine costs $5,000. Reagents and materials that will last 2-3 years cost $2,500. I will purchase it in Canada and take it to Uganda in August of this year.

Consider this ...... a $7,500 solution that will save lives. With early diagnosis, children will receive treatment long before hemophilia causes disabling bleeds into joints and other organs. Brothers Devis and Denis, pictured to the left, have haemophilia and are suffering the consequences of a late diagnosis. We can prevent that from happening. Children will have a chance at a normal life – to go to school and to play with friends, free from pain and free from bleeding.

Together, we can help Agnes and the team in Kampala make a life-changing impact for children with hemophilia. Thank you for your support.