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Haemophilia treatment for all

A partnership for better access

Published 13 April 2021

This World Haemophilia Day, we celebrate the World Federation of Hemophilia (WFH) Humanitarian Aid Program, and its mission of improving access to treatment in developing countries.

Around 75% of people with bleeding disorders live in countries where there is little or no access to treatment.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. Bleeds which aren’t treated in time could lead to irreversible joint damage and intracranial bleeds, potentially leading to brain development problems which may be life-threatening. The impact of these bleeding episodes is carried with patients and their families or caregivers, over their entire lifetime, resulting in missed school or work, missed physical or social activities with friends and family, disability, and more, due to frequent long-distance travel to treatment centres and repeated, painful bleeding episodes. In fact, for people born with haemophilia in low-income countries, the chances of living a normal lifespan is reduced by up to 93%.2 This urgent and important public health challenge highlights the need for sustainable access to treatments for people with haemophilia in developing countries.

Many people in developing countries face logistical challenges where visits to the doctor or hospitals may require exceptional effort and expense. Sadly, children with severe haemophilia often do not survive to adulthood because they are unable to access the treatment that they so critically need.
Alain Baumann, CEO of the WFH


The WFH is leading the effort to change this. Through its Humanitarian Aid Program, the organisation is working with multiple partners, including Roche, to provide consistent and predictable access to preventative and on-demand treatment for bleeding disorders, for people in locations that need it most.

The lack of access to treatment for bleeding disorders in developing countries is an urgent and important public health challenge. With the WFH Humanitarian Aid Program, we are able to work towards our vision of Treatment for All by providing a variety of treatments, including novel therapies for emergency and preventative treatment, for those in need.
Assad Haffar, MD, Medical Director at the WFH
Image provided by the World Federation of Hemophilia
Image provided by the World Federation of Hemophilia

As part of our commitment to bring sustainable solutions to the haemophilia community, Roche is collaborating with the WFH to provide a novel prophylactic treatment to as many as 1,000 people with haemophilia A over five years in locations where there is little or no access to haemophilia treatment. This marks the first time that people with haemophilia A in developing countries will have 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, with funding to ensure local infrastructure and medical expertise are available to optimise and appropriately use the donated product.

WFH Humanitarian Aid Program - Changing lives in Zambia

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.

With support from the WFH Humanitarian Aid Program, people with haemophilia A can begin to focus on their lives, by going to school or work and spending less time travelling to treatment centres, allowing them to enjoy an improved quality of life.

References

  1. World Federation of Hemophilia. About the WFH. Available online: https://www.wfh.org/globalforum/en/about/about-the-wfh [Last accessed April 2021]
  2. 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

Tags: Society, Patients