Since the early 2000s, the World Federation of Hemophilia (WFH) has made a concerted effort to reach out to sub-Saharan Africa and in a few short years has helped make a dramatic impact on the lives of people with bleeding disorders.
Before the turn of the new millennium, there were only five WFH national member organizations (NMOs) from sub-Saharan Africa (Nigeria, Kenya, South Africa, Zimbabwe, and Senegal). Subsequently, the WFH has made a concentrated effort to improve care for people with bleeding disorders and have brought in 13 new NMOs from the region, thereby enabling the WFH to further support to those in need.
The situation in sub-Saharan Africa posed a particular challenge. Prior to the WFH’s involvement on the continent, hemophilia was a rarely heard of or spoken about condition, let alone treated. Children often die young without any real explanations. Without the proper tools or knowledge, medical professionals in these countries simply did not know what the patients were dying from. While many other countries around the world needed to improve diagnosis and care, the situation for people with bleeding disorders in sub-Saharan Africa was dire.
“I have seen only four cases of hemophilia in the last 20 years. Diagnosis was mainly clinical and they were treated by fresh whole blood and fresh frozen plasma. The equipment to prepare cryoprecipitate is not working,” said a Tanzanian hemotologist.
In order to properly contribute to improving this situation, it was necessary to build a network of care from the ground up. Those working in the region knew that despite this lack of infrastructure, there was a great need from the bleeding disorders community.
The key to building a community of support in these countries begins with identifying key individuals that wants to affect proper change for bleeding disorders community. In many cases of the sub-Saharan African countries, it is actually just one individual that is the point of contact between the WFH and the patient. With a concerted effort from this one person, along with assistance from the WFH, the right people can come together to form a organization. From there, they can begin to educate and train the right people on the ground so that help gets where it is needed most. This is the optimal model to begin to establish care in a country. However, in several countries that have since become WFH NMOs, a primary contact could not be identified and someone had to be brought in to establish a foundation from which to build upon.
In order to facilitate the process of establishing care on the ground and maximize results, the WFH split sub-Saharan Africa into three sectors, West Africa, East Africa, and South Africa, with the cities of Dakar, Nairobi, and Johannesburg serving as the centres of each sectors respectively. Within each of these sectors a centre, usually in an established city, was selected to train and give resources to organizations that were just starting out.
To make a difference in the lives of people, the first thing that must be done is to begin identifying the patients. Although this may sound like a simple task, diagnosing patients starts with organizing a group of lab technicians who know how to properly test for bleeding disorders and then identify people that may have hemophilia. Not having proper functioning laboratories to do the coagulation tests means that blood had to get sent to Europe or to South Africa to be analyzed, which was costly and time consuming.
The next phase is to build a comprehensive care team consisting of a hematologist, nurse, physiotherapist, social worker, orthopedist, dentist, and a lab technician within each country that can monitor and care for the new patients. In 2008, the WFH began by holding a series of training workshops with members of the comprehensive care team through each of the sub-Saharan sectors. This approach assisted in providing the knowledge professionals required and in turn could put into practice.
Development work within Cameroon illustrates how the efforts of a small group can improve the lives of people in need. Prior to joining the WFH in 2008, Cameroon had a basic level for care of people with bleeding disorders. Medical professionals had very limited knowledge of hemophilia or how to treat it. The country, in terms of care for people with a bleeding disorder, was starting from the bottom.
The first step was identifying a proper laboratory technician and a hematologist. With Cameroon, there was a good pool of eager people to work with and from there it was a matter of getting those people the right training. Within a few short years, Cameroon went from very basic care and diagnosis to being to identify patients and take proper care of them.
Sub-Saharan African countries have had to face many hurdles when developing hemophilia care within their own communities but by providing support and expertise to these countries, they are put on a path to build upon their own successes and improve access to care and treatment.
“Thank you and WFH for the support with factor VIII. It is like a dream come true because for so many years we struggled. Now we can even administer factor VIII prophylactically for patients who have the moderate and severe hemophilia or are developing complications,”
said Dr. Pauline Musukwa Sambo Consultant Paediatrician Hemato-oncology unit Department of Paediatrics University Teaching Hospital Lusaka, Zambia.