The Komfo Anokye Teaching Hospital (KATH) has diagnosed more than 500 patients with Hemophilia, Dr Yaa Gyamfua Oppong Mensah, Specialist Pediatrician, Department of Child Health, KATH has said.
Hemophilia is a bleeding disorder where an individual’s blood does not clot properly due to lack of sufficient blood-clotting proteins (clotting factor) which help to stop bleeding.
However, Dr Mensah said from the estimated prevalence based on the nation’s population, there could be more than 3000 people living with hemophilia in the country, an indication that “we are yet to identify over 2000 potential patients to be diagnosed and offered comprehensive care.”.
In an interview with the Ghana News Agency (GNA), as Ghana joins the rest of the globe to mark the World Hemophilia Day (WHD), Dr Oppong said about 400,000 people were living with the disease, saying disease occurred one in every 10,000 births.
The WHD is an international observance day held annually on April 17 by the World Federation of Hemophilia (WFH) and its affiliate National Member Organizations (NMOs).
This year’s theme: “Equitable access for all”, calls to help increase awareness of the inherited bleeding disorders including hemophilia and to make adequate care accessible to every patient who needs it in the various communities.
With WFH shouldering a bigger portion of the responsibility involved in management of hemophilia, Dr Mensah called on the government to also consider adding hemophilia to the diseases under NHIS to not only lighten the burden of affected families but also to help close the gap in the care of these patients.
According to her, patients commonly present with bleeds in joints and muscle, causing swellings, pain and tightness.
They have easy bruising, nose bleeds, gum bleeds and are difficult to control after losing a tooth, they may even present with blood in their stools and urine, post vaccination bleeds as well as life threatening bleeding in the head, chest or abdomen.
Dr Mensah said the earliest symptom that could point to diagnosis could be cord bleed, scalp bleeds and most importantly post circumcision bleed.
Post circumcision bleed has been the bane of most marriages as couples lose their sons from excessive bleeding after the procedure, she added.
Dr Mensah said gene therapy, which was supposed to be the panacea to the treatment of the disorder, had reached advanced stages and yet to be rolled out worldwide, indicating that the best way to treat hemophilia was to replace the missing clotting factor so that the blood could clot properly.
Currently in Ghana, she said two comprehensive Hemophilia treatment centers had been established in KATH and the Korle-Bu Teaching Hospital where patients were offered comprehensive care to improve their overall quality of life.
These centers were established with the support of the Ghana Hemophilia Society (GHS), a non-profit organization founded by a parent, Mr. Martin Boakye in 2009.
The GHS educates, trains health workers and advocates for people living with hemophilia and the society and this had gained recognition and membership from the WFH, Canada, Dr Mensah stated.
She said through the support of the WFH, the GHS also benefited from the humanitarian aid programme where the society received expensive clotting factors for Ghanaian patients.
“So, living with hemophilia is at no cost to the patients. On the average, over US$3 million dollars of donations are received every year from the world body to the society on behalf of the patients” she stated.
Majority of the patients, however, cannot afford the laboratory investigations required in the diagnosis and management of this disease, she said.
Like most chronic diseases, mothers of children with hemophilia are left to shoulder the burden of all the required laboratory investigations by themselves and the peculiarities in the mode of inheritance even worsens this situation as fathers blame the mothers for the condition with some shirking their responsibilities towards their affected children.
She said the society had stepped up efforts to get the government to give the patients of hemophilia equal attention in medical care and expressed satisfaction that the advocacy had reached an advanced stage to get the hemophilia care into the National health insurance scheme.
When it is done these patients will benefit from laboratory diagnosis: screening and coagulation (assays) analysis and the procurement of essential drugs to augment the existing inflow of donations.
These, Dr Mensah added remained the bane of many potential patients who, for lack of funds, refused even to get screened and therefore, did not get factor treatment.
