Pfizer, an American multinational pharmaceutical company, is creating awareness on a rare disease, hemophilia, that deforms or truncates the lives of children.
The pharmaceutical company has taken it upon itself to champion the fight against hemophilia, due to the effects on children’s survival, physical and psychological well-being as well as well as societal knowledge gap of the disease.
Pfizer is also spearheading awareness about hemophilia, as it had become critical public health issue in Ghana and other parts of the West Africa sub-region.
At a roundtable meeting sponsored by Pfizer for journalists across the subregion, it was established that hemophilia was responsible for joint pains, deep bruises, swellings, unexpected bleeding, and blood in urine or stool experienced by children.
Hemophilia can result in seizure and paralysis or even death, and yet not much is known about it even in the medical field.
Addressing the roundtable meeting held on Thursday, April 14, 2023, Dr Vivian Painstil, a senior lecturer at the Department of Child Health at the Kwame Nkrumah Science and Technology (KNUST) and Senior Specialist Paediatrician working at the Komfo Anokye Teaching Hospital (KATH), explained that hemophilia is a rare inherit health disorder that prevents blood from clotting properly.
She added that it is a terminal health disease and patients who survive it, suffer lots of disabilities in later life, adding although there are about 1,500 cases present in Ghana, just about 397 cases had been diagnosed.
Meanwhile, she said the knowledge gap among health professionals as well as the larger society on hemophilia is a major risk factor, posing threat to the qualify of treatment and life of hemophilia patients.
Similarly, most of the health centre particularly in the periphery or districts of the country do not have adequate facilities to diagnose hemophilia cases. Hitherto, treatment is not available on the National Health Insurance Scheme (NHIS).
Dr Painstil indicated that most parents have short life expectancy, due to these factors and others including sociocultural beliefs.
She, therefore, advocated for a multidisciplinary approach to the treatment of hemophilia and adequate knowledge of the rarer disease among the larger society.
Additionally, she called on the Government of Ghana to make treatment of hemophilia available on NHIS, since it is too expensive and most families of hemophilia patients cannot afford.
“The burden people living with hemophilia B face is significant, with many receiving routine infusions or injections, which can interfere with their ability to take part in day-to-day activities that many take for granted,” she stated.
Prof. Akanmu Sulaimon, Professor of Hematology and Blood Transfusion of the University of Lagos, added that perhaps hemophilia is partly to be blamed for high child mortality rate among boys than girls.
According to him, although not many health professionals are aware of hemophilia, it is imperative that parents to know that when the umbilical chord of their child is not healing as expected, it is a suspected case of hemophilia.
He said while countries like South Africa, Tunisia, Algeria and Egypt had taken the led to prevent this genetic disorder, their counterparts at the subregion are yet to find their tracks to race against hemophilia.
Kodjo Soroh, Medical Director, Sub-Saharan Africa, Pfizer commented: “Pfizer’s efforts at advancing treatment for hemophilia and bridge gaps in access to care resonates with this year’s theme of World Hemophilia Day’s (WHD) Access For All: Prevention of Bleeds.1 Pfizer’s commitment to equity and continued investment in hemophilia is evident in its more than 30 years of experience in developing therapies for hematological disorders as it has a deep understanding of the significant challenges that people living with hemophilia continually face.2 Therefore, we will continue to amplify and celebrate the work of the global hemophilia community as we create awareness on the need for innovation in access to hemophilia treatments.
3. According to the World Federation of Hemophilia, an international not-for-profit organization, more than 38,000 people worldwide were living with hemophilia B in 2021. WFH works closely in partnership with hemophilia treatment centers (HTCs) in 29 African countries to share knowledge and build global awareness through information exchange, education, and training. WFH also provides ∼24 million units of CFCs per year to patients in sub-Saharan Africa through a humanitarian aid program. 4 Pfizer is a visionary partner of the World Federation of Hemophilia for WHD.”
