Help Wanted: Hemophilia in Africa
“I am hemophilia A patient. My three uncles died from hemophilia, two of them bled to death at the circumcision clamp. Nobody knew they had hemophilia until I was born. I called Sister Mokwena to tell her about my fear of being abducted to the mountains for circumcision.”—13-year-old Mario Ngobeni at the official launch of the 2002 South African Hemophilia Program.
Here’s a statistic to shock anyone with hemophilia who lives in an affluent country with a modern healthcare system and the latest treatments: about 70 percent of the world’s hemophilia cases are undiagnosed and untreated, the majority in developing countries. For these patients, survival past their mid teens is rare.
Despite being the second most populated continent in the world, Africa is plagued by widespread poverty—in part due to corrupt governments, crippling malnutrition, tribal and military conflict and the rapid spread of disease. Lack of investment in the treatment of rare, chronic conditions is common. Further, the limited money available for healthcare is often spent on issues affecting the majority of the population, leaving those with hemophilia with little access to diagnostic capabilities, poor or no access to care, and little or no available factor replacement therapies.
In 2008, the Ugandan newspaper The Monitor, reported: “The country is now plagued with malaria, meningitis, Ebola, and hemophilia has lost its priority in the government’s eyes.” Although this describes the situation in Uganda, it seems equally applicable to many other African nations.
In Zimbabwe, one in every 20,000 people has hemophilia A, while one in 40,000 has hemophilia B. Most of the known cases are of severe hemophilia—because those with mild symptoms don’t tend to go to hospital and remain undiagnosed unless there is a sign of the condition after an accident or an operation. For them, financial problems and difficult travel logistics may mean disaster and even death. Apart from financial difficulties and severe pain, the condition can cause family conflicts, especially where a woman is thought to be the main carrier and cause of the disease in the family.
HIV and Hemophilia
In Botswana, diagnosis and treatment of hemophilia is made more difficult by a combination of factors. First, patients are often unwilling or unable to give accurate family histories because the stigma associated with hemophilia encourages them to conceal the disorder, making treatment difficult. Second, Botswana has the world’s highest rate of HIV infection—around 40 percent of the adult population—meaning that the local blood supply is at constant risk of infection. Consequently, there is an urgent need to reduce the frequency of transfusions.
By comparison, the small East African country of Eritrea, with a population of just 4.3 million people, has an estimated HIV rate of 2.8 percent. This reduces the blood contamination potential and increases the potential donor pool—a valuable advantage for a country that has suffered years of independence struggles, a border war with Ethiopia, droughts and locust plagues.
Local Heroes
Across the continent, improvements in hemophilia treatment are resulting from the tireless efforts of local advocates. In South Africa, for example, Dr. Cyril Karabus of the Red Cross Hospital in Cape Town has long fought for an official hemophilia health program in the country.
Such role models have an immensely powerful impact, creating a ripple effect of good works. One of Dr. Karabus’ patients, Xolisa Bodlo, is a case in point. Referred by Dr. Karabus to a home for young patients with long-term illnesses, Bodlo connected with volunteers from the South African Haemophilia Foundation (SAHF).
The SAHF volunteers educated Bodlo so that he could manage his condition. Inspired by their work, he formed the support group “Reach Out Centre for Kids”—a home-based training and support program that moves tertiary care closer to patients. This ground-breaking example of patient power empowers individuals by enabling them to solve problems early, and reduces the demand for factor concentrate. The program has been so successful that the SAHF has extended it to other parts of the country.
Not Alone
Although things currently look grim for Africans with hemophilia, the future may well be a good deal brighter thanks to the efforts of several dedicated organizations.
The World Federation of Hemophilia (WFH) is focusing its African efforts on four important issues: care delivery, medical expertise, treatment products and patient organization. Working with the World Health Organisation (WHO), the WFH wants to increase survival rates through cost effective health programs. Regular meetings are held with African governments to ensure official recognition of Hemophilia Treatment Centers (HTCs), improvements in data collection, and the establishment of hemophilia societies. The WFH’s vision of being “One Big Happy Family” appears to have hit the right note—a 2001 survey showed improvements in patient registration.
References
- World Health Organisation documents on Haemophilia
http://www.who.int/genomics/publications/en/Haemophilia resources - South Africa Haemophilia Foundation
http://www.haemophilia.org.za/ - Treatment Guidelines for Haemophilia in South Africa
http://www.nbi-kzn.org.za/download/treatmentguidelines1.pdf - The Novo Nordisk Haemophilia Foundation (NNHF)
http://www.ifpma.org/index.php?id=2203 - Haemophilia in Kenya
http://www.tropicalmedandhygienejrnl.net/article/0035-9203(66)90229-X/abstract - Haemophilia in Somalia
http://content.karger.com/ProdukteDB/produkte.asp?Doi=215899 - Haemophilia Organisation in Kenya
http://www.socialedge.org/features/global-social-benefit-incubator-2009/gsbi-2009-exercise-1-value-proposition/gsbi-2009-exercise-1-value-proposition/627525962 - Haemophilia in the developing world
http://www.epidemiologia.anm.edu.ar/pdf/publicaciones_cie/2004/Haemophilia_developing_world_2004.pdf - World Haemophilia Federation
http://www.wfh.org/index.asp?lang=EN - World Haemophilia Federation - Global Survey Charts improvements in Healthcare
http://www.wfh.org/2/docs/Publications/Hemophilia_World/HW_Dec01_English.pdf - Tropical Medicine and Hygiene Haemophilia in Uganda
http://www.tropicalmedandhygienejrnl.net/article/0035-9203(68)90086-2/abstract - Haemophilia in Sudan
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2141.1973.tb01717.x/abstract - Haemophilia - a rare and expensive disease
http://www.trinicenter.com/modules.php?name=News&file=article&sid=20 - Haemophilia Blog Uganda
http://haemophiliauganda.blogspot.com/2008/05/article-about-haemophilia-foundation-of.html
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