The Humanitarian Aid Program, a landmark initiative by the World Federation of Hemophilia (WFH), is leading the effort to help address and improve access to treatment in developing countries.
Most people with bleeding disorders in developing countries have no access to diagnosis, treatment and care.1 Because of this, children and adults who have haemophilia face an uncertain future.
Medical care for haemophilia A, perhaps the most well-known inherited bleeding disorder, is often restricted in developing countries. Resources are limited and saved for emergency situations or isolated bleeding events and cannot always be used for prolonged protection against bleeding episodes. This means people with haemophilia A, especially those with inhibitors, where treatment options are particularly limited, often suffer painful joint bleeds which could significantly affect their health and quality of life.
Management of haemophilia A in the first five years of life is particularly crucial in determining the long-term impact of the disease. People with severe haemophilia in these countries often do not survive to adulthood because they are unable to access the treatment that they so critically need.2 For those who do, life often entails severe disability, isolation and chronic pain. In addition, these bleeding episodes impact the quality of life for these patients and their caregivers, for the duration of their lifetime; resulting in missed school, work, physical or social activities with friends and family. In fact, for people born with haemophilia in low-income countries, the chances of living a normal lifespan is reduced by up to 93%.3
The WFH is leading the effort to change this. Through its
The WFH Humanitarian Aid Program continues to support our goal of improving the quality of lives for people with bleeding disorders by increasing diagnosis and treatment numbers, despite the challenges of the COVID-19 pandemic. With the Program, we are able to work towards our vision of Treatment for All by providing sustainable access treatment, including novel therapies for emergency and preventative treatment.
Worldwide, prophylaxis remains the goal of treatment for people with severe haemophilia, allowing them to remain active and participate more fully in daily life. In addition to providing donated prophylactic treatments to those in need, the Program also highlights the benefit of prophylaxis to show governments how sustainable care can ultimately benefit their society as a whole, for example by increasing participation in school and work.
The lack of access to adequate care and treatment available for people with inherited bleeding disorders, such as haemophilia A, in developing countries can have a devastating effect on their lives, both physically and psychosocially. Through the Program, donations are increasingly used to treat young people prophylactically; allowing them to go to school and social events, and generally leading to fewer bleeds, less joint damage, and a more normal life
Since 2019, Roche has been a Visionary Contributor to the WFH Humanitarian Aid Program, so far providing its novel prophylactic treatment to over 940 people with haemophilia A in 30 countries where there is little or no access to haemophilia treatment. The partnership marked the first time that people with haemophilia A in developing countries had received access to a subcutaneous prophylactic treatment that can be administered as infrequently as once per month.
Roche also contributes to the WFH Humanitarian Aid Program integrated care development training to ensure local infrastructure and medical expertise are available to optimise and appropriately use the donated product.
By working toward a shared vision of Treatment for All, the WFH and all of its partners, including Roche, are aiming to address gaps in care and enable people with a high-need for treatment to experience an improved quality of life and longer-term protection against bleeding episodes.
References
World Federation of Hemophilia. Achieving Global Impact – Strategic plan: 2021-2025 [Internet; cited May 2022]. Available from:
Ghosh K and Ghosh K. Management of haemophilia in developing countries: challenges and options. Indian J Hematol Bloos Transfus. 2016 July-Sept; 32(3):347-355.
Iorio A, et al. Establishing the Prevalence and Prevalence at Birth of Hemophilia in Males. Ann Intern Med. 2019;171(8):540. doi:10.7326/m19-1208
About The WFH Humanitarian Aid Program
The 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. None of this would be possible without the generous support of Sanofi and Sobi, our Founding Visionary Contributors; Bayer, CSL Behring and Roche, our Visionary Contributors; Grifols, our Leadership Contributor; and Takeda, our Contributor. To learn more about the WFH Humanitarian Aid Program, visit