The World Federation for Haemophilia (WFH) says it’s made tremendous strides in combating the scourge of Haemophilia through its support programme of ‘improving diagnosis and access to treatment for all people with inherited bleeding disorders’, though it agrees that more still needs to be to ensure that the right information on the disease reaches the public.
Irene Chami, who is the Regional Manager for the World Federation for Haemophilia supporting Eastern, Central and Southern Africa and based in Nairobi, Kenya, says the organization, which has a presence in more than 194 countries globally has a lined up programme on Haemophilia diagnosis.
“We are working tirelessly in trying to ensure that Haemophilia carriers are identified and given medical assistance. We are doing this through the numerous programmes such as building capacity for our national member organizations to save the inherited bleeding disorder community; share knowledge and build awareness globally through information exchange, education and training (like this work shop aimed at furnishing doctors and nurses on how to identify Haemophilia patients and how to administer medication); through the definition and promotion of data collection support and research to provide evidence to make the case for better case study,” she said.
She also said that her organization is working in partnership various health departments and ministries in 14 countries in Africa to improve access to safe and effective Haemophilia diagnosis through advocacy and product donations.
Officiating at the same workshop, held at Lusaka’s Mika Hotel and organized by the Zambian Childhood Cancer Foundation (ZACCAF), Health Services Permanent Secretary, Jabbin Mulwanda said that government was committed to improve the health status of Zambians through equitable access to cost effective, quality health services as close to the family as possible including those suffering from non-communicable diseases such as Haemophilia.
Kate Khair, nurse paediatric of the World Federations of Haemophilia of London South University Bank in the United Kingdom says Haemophilia is a non-communicable disease which is characterized by excessive bleeding and is usually passed down from one generation to another by way of genetic mutation from carriers, women in particular.
“The major carriers of the disease are women, though the disease is dormant in them. They carry the disease and pass it on to their offspring through genes, both males and females though females don’t usually suffer from it. Women can only carry it in their blood, transmit it to their offspring and the males will suffer from the disease,” she says. Currently, Zambia has approximately between 1500 to 3500 Haemophilia patients, with 114 identified with the disease and diagnosed.
According to a survey by the WFH, at least more than 600, 000 people are living with Haemophilia A and B and of that number, only about 184, 000 patients are diagnosed.