The expanded WFH Humanitarian Aid Program improves the lack of access to care and treatment by providing much-needed support for people with inherited bleeding disorders in developing countries. By providing patients with a more predictable and sustainable flow of humanitarian aid donations, the WFH Humanitarian Aid Program makes it possible for patients to receive consistent and reliable access to treatment and care. In September, Hemophilia World Online talked with Glenn Pierce, MD, PhD, WFH Vice President, Medical, about the work the WFH Humanitarian Aid Program is doing in Africa.
“Much can be done given that we have a well-established WFH Humanitarian Aid Program,” Pierce said. “This is particularly true in Africa, where there are many difficulties that need to be overcome.” He went on to say that Africa has had many challenges because of widespread poverty, lack of stable governments and lack of adequate training. Fortunately, there are many dedicated individuals on the continent who are working to help those with bleeding disorders. Those people are medical professionals, physicians, nurses, patients and patient families, and government officials who have made commitments. Many of these people work with the WFH through the WFH Humanitarian Aid Program on a regular basis to help make a difference on the continent.
Pierce explained that making commitments in Africa can be difficult because getting funding for a rare disease like hemophilia—or even rarer diseases like other bleeding disorders—can be very challenging. As a result of this situation, people in Africa are largely undiagnosed. Less than ten percent have been identified, which is far below the expected prevalence. Many have died without being diagnosed, and many are living with hemophilia—sometimes even severe hemophilia—but haven’t been diagnosed. They might be in small villages without access to any medical care. These individuals have simply figured out how to cope with their condition, but this often means living with nearly full incapacity. There are also patients in Africa who have complications that haven’t been seen in North America and Europe in decades, such as pseudotumors, or compartment syndromes, where continued bleeding leads to massive destruction of normal tissues. Substantial morbidity and mortality occur because of prolonged uncontrolled bleeding. As a result of this reality, life is very difficult for people with a bleeding disorder in Africa.
“The situation is only marginally better for those who have been diagnosed,” Glenn Pierce continued. “The vast majority of patients don’t have access to any care, or have very inadequate treatment.” He went on to explain that the WFH is improving the situation through the WFH Humanitarian Aid Program, which has helped to make a huge difference in people’s lives in Africa. The Program has allowed people to get factor for bleeding episodes, and, in some cases, has allowed them to go on a low-dose prophylaxis regimen to prevent some bleeding. Some patients have even undergone immune tolerance therapy to try and eliminate their inhibitor if they have one.
Of the approximately 19,000 people with hemophilia receiving treatment annually from the program, about 2,750 live in Sub-Saharan Africa. Pierce said that he is grateful the WFH Humanitarian Aid Program is supporting—and will continue to support—the bleeding disorders community in Africa. Much has been done, he stated, but there is still much to do.