Why global access to hemophilia treatments matters
On World Hemophilia Day, let's push for a better standard of care
Significant disparities in access to hemophilia treatment exist around the world. In general, people with hemophilia can live a relatively normal life if their condition is properly managed and they have access to appropriate medical care. However, in developing countries, access to adequate treatment and medical care can be limited, which significantly impacts life expectancy.
The theme of this year’s World Hemophilia Day, on April 17, is “Access for All: Prevention of bleeds as the global standard of care.” According to the World Federation of Hemophilia, “over 75% of expected people living with hemophilia worldwide have not yet been identified and diagnosed.” Rates are even lower for women and girls with von Willebrand disease and other rare bleeding disorders. These people have no access to treatment and care without a diagnosis.
Factor replacement therapy is the standard treatment for hemophilia, but these products are expensive and difficult to obtain in developing countries. This can result in limited access to treatment and inadequate care.
Hemophilia is a complex condition that requires specialized medical expertise to diagnose and manage effectively. In many developing countries, there is a shortage of trained medical professionals familiar with the latest treatments and management strategies for hemophilia.
Fixing the problem
The nonprofit organization Save One Life is on a mission to improve the quality of life for people with bleeding disorders in developing countries. It has a program called Project SHARE, which aims to recover excess unused or unwanted factor in the U.S. that would otherwise be destroyed. The donated factor is sent to people in need in other countries.
Last month, I found myself with several vials of unusable factor products. I use BeneFix for hemophilia B and Humate-P for von Willebrand disease. Factor products should be refrigerated, but Hurricane Ian knocked out electricity to my condo for over 10 days last September. I decided to donate my factor instead of throwing it away.
Most factor products need to be refrigerated to maintain their effectiveness and stability. If these products are not stored properly or are exposed to heat, light, or humidity, they can lose their potency and become less effective. However, even if the factor is slightly less effective, it’s better than nothing. Therefore, donated factor can save lives.
Donating the factor was simple. I filled out a form online, packed the vials in a box, and brought them to my post office. In return, I have peace of mind that my expensive medicine wasn’t wasted. I received a beautiful thank-you note informing me where my medication was sent.
The disparity in treatment for hemophilia is a complex issue that will require a multifaceted approach. A couple years ago, the World Federation of Hemophilia published a road map with the goal of ensuring that all people with bleeding disorders eventually can access treatment. It’s a lofty goal, and I hope we can get there. Meanwhile, you can help by donating your unused or unwanted factor products to Project SHARE.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.
Save One Life is a great organization. Until the Taliban took over Afghanistan in 2021, they were able to send factor there. Now, however, they cannot do it. DHL and FedEx have quit flying into the country. Through volunteer work on the internet, I've become friends with a family in Herat, Afghanistan who have a 17 year old son with severe hemophilia A. He has constant bleeds in one place or another. One hand is paralyzed and he has a fair amount of joint damage. Needless to say, he has constant pain. There is no factor now in Herat. Save One Life says they could send it to neighboring Pakistan. Does anyone know a way it could be brought to Herat? It is OK to publish my email if anyone can answer: [email protected]
Thank you, June. I am so sorry to hear about the situation in Afghanistan. I hope a solution surfaces soon.