Haemophilia: Experts Urge For Proper Diagnosis And Disease Management

According to experts, people with haemophilia are at a severe risk of excessive and recurrent bleeding from modest injuries, which could potentially end up being life-threatening.

Ahead of the 2023 World Haemophilia Day (WHD), health experts in the African region are advocating proper diagnosis and management of the disease within the region.

Speaking during a virtual media roundtable on Thursday, a professor of Hematology and Blood Transfusion at the University of Lagos, Sulaimon Akanmu, said cases of haemophilia recorded in the region are quite low because people are hardly diagnosed with it.

Mr. Sulaimon said the region with over one billion people accounts for only three percent of haemophilia cases globally. He said countries like Egypt, Tunisia, Morocco, and Algeria contribute to the bulk of the three percent recorded.

He noted that it is mostly assumed that there are more haemophilia cases in the developed world than the low and middle-income countries (LMIC). He, however, insisted that such a perception is not true.

“The difference between developed countries and the LMIC is high diagnosis. The developed countries diagnosed more persons living with the condition, hence recording higher cases than its counterparts,” he said.

Mr. Sulaimon said although it is estimated that about 20,000 persons should have haemophilia, the country accounts for only 1,000 cases.

He said the majority of the cases, according to the register of the Haemophilia Federation of Nigeria, are either in Kaduna or Lagos State “because they diagnose more people.”

“Nigeria is diagnosing only about five percent of people that are supposed to be diagnosed and receiving care. This is telling us that we are still not diagnosing the disease which is killing our children in various communities.”

The media roundtable was organised by Pfizer, a U.S. pharmaceutical company, as part of efforts to make sure patients living with haemophilia are seen, heard, and never forgotten as it continues to work tirelessly to find breakthrough solutions and therapeutic options to change lives.

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Haemophilia is a rare genetic bleeding disorder that causes the blood to take a long time to clot because of a deficiency in one of several blood clotting factors. This condition is almost exclusively found in males.

People with haemophilia are at risk for excessive and recurrent bleeding from modest injuries, which have the potential to be life-threatening.

Mr. Sulaimon said people with severe haemophilia often bleed spontaneously into their muscles or joints, or rarely into other critical closed spaces such as the intracranial space, where bleeding can be fatal.

The two main types of haemophilia are A and B, with a third, rarer form called haemophilia C. Although there is no known cure for this disease, treatment can help manage the condition.

Speaking at the roundtable, Vivian Painstil, a senior lecturer at the Department of Child Health, Kwame Nkrumah University of Science and Technology (KNUST), Kumasi, Ghana, said there is a need for quality medical intervention for people suffering from the disease.

Ms. Painstil said without proper treatment for patients, many will end up with a poor quality of life, “There is an increased rate of a joint disability, making a lot of them dependent on other people because they are not receiving proper treatment,”.

She called for proper management to ensure people have a chance to live irrespective of their medical condition.

The Medical Director, of Sub-Saharan Africa for Pfizer, Kodjo Soroh, said Pfizer’s efforts at advancing treatment for haemophilia and bridging gaps in access to care resonates with this year’s theme of WHD, Access For All: Prevention of Bleeds.

Mr. Soroh said Pfizer’s commitment to equity and continued investment in haemophilia is evident in its more than 30 years of experience in developing therapies for haematological disorders.

He states that the company has a deep understanding of the significant challenges that people living with the condition face on a daily basis, “Therefore, we will continue to amplify and celebrate the work of the global haemophilia community as we create awareness of the need for innovation in access to haemophilia treatments,” he said.