By: Mavis Offei Acheampong
There’s not enough knowledge on Hemophilia – a bleeding disorder in children – and this stands in the way of its diagnosis, care and treatment. Senior Specialist Pediatrician at the Komfo Anokye Hospital Dr. Vivian Painstil says for good care and support systems for children with the condition, this must be remedied.
In a virtual meeting with Journalists in the subregion Dr. Painstil said the myths and superstition surrounding the disease is also killing lots of children in the subregion and called for more awareness creation and commitment from government for good diagnostic.
Hemophilia is an inherited blood disorder that prevents blood from clotting as it should. This happens because the body doesn’t make produce enough of a blood clotting protein in the blood called Factor 8 and Factor 9. Without these, blood will not clot well. Hemophilia occurs mainly in males but females can also carry the gene that causes it and may or may not have bleeding problems. There is currently no cure for hemophilia but there are medications to prevent it. On the average one unit of factor 8 concentrate cost one dollar. About two thousand dollars is needed to manage an individual. Expects say Prophylaxis dose when given 3 times a week in one year will be less than the money needed thus 20 percent of the amount of the concentrate needed to manage a bleeding situation.
People with hemophilia are at risk of excessive and recurrent bleeding from modest injuries, which is also life threating. Blood products such as Fresh frozen plasma are giving to children who have the disease when the factors are not available. Prophylaxis is also given to prevent from bleeding. Hemophilia comes in Hemophilia A, B and C. According to the World Federation of Hemophilia (WFH), more than 38,000 people worldwide were living with hemophilia B in 2021.
In Ghana there are currently over 300 patients under care and over 1500 case yet to be diagnosed. A Senior Specialist Pediatrician at the Komfo Anokye Hospital Dr. Vivian Painstil said most patients bleed into the joint which results in swollen joint that deforms with time and causes disability. She stressed the need to create more awareness on hemophilia [bleeding] and its care mechanisms.
“Most of the time we are not able to diagnose it. We need to advocate so that all can invest to be able to diagnose them properly. In terms of treatment, we need to the treatments available. There should be a way to have it in the National Health Insurance Scheme (NHIS) so the vulnerable will be able to afford. “More medical personnel should be trained on the condition with adequate drugs and diagnostic equipment provided for a comprehensive care support for Patents” she said.
Dr. Paintsil noted that Teaching Hospitals and some selected regional hospitals providing support for Hemophilia patients in the country is not enough. Some Socio-cultural practices also prevent people suffering from the condition from seeking early medical intervention. According to her some people with the condition blame it on witchcraft or curses.
On his part a Professor of Hematology and Transfusion Medicine at the College of Medicine of the University of Legos, Prof. Akanmu Sulaimon said most people continue to confuse hemophilia bleeding with sickle cell anemia.
He said though the two sickness are both genetic disorders, the mode of inheritance are completely different. “The most common Hemophilia that kills and cripples our children in the sub region is Hemophilia A. Ghana and Nigeria continues to manage complications and not preventing the evolution of complications.
He said the World Federation of Hemophilia (WFH) works closely in partnership with Hemophilia treatment centre in 29 African Countries to share knowledge and build global awareness through education, exchange and training. WFH also provide CFCs per year to patients in the Sub-Saharan Africa through a humanitarian aid program.
The Pfizer Medical Director Sub-Sahara Africa Kodjo Soroh emphasized that “Pfizer’s effort at advancing treatment for hemophilia and bridging gaps in access to care resonates with this year’s World Hemophilia theme “ Access For All: Prevention of Bleeds”
He said Pfizer’s commitment to equity and continued investment in hemophilia was 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. He pledged Pfizer’s continues commitment to raise awareness on the condition.
The media briefing was organized by Pfizer in partnership with the World Federation of Hemophilia to create more awareness on the condition, while driving home the need for innovation in access to hemophilia treatments.
The goal of Pfizer to make sure patients living with hemophilia are seen, heard, and never forgotten as it continues to work tirelessly to find breakthrough solutions and therapeutic options to change their lives was reiterated at the media roundtable.
