Some children with hemophilia are left bedridden following a three-month delay in the delivery of blood components responsible for the clotting of blood.
According to parents of children with the condition, the Food and Drugs Authority has delayed in releasing documents to facilitate the importation of the donor-sponsored medication.
Some of the distressed mothers say further delay in delivery of the medication could lead to deaths among children living with the condition.
Distraught mother, Sandra Opoku says, “What is making us very worried is that, if you go to the Komfo Anokye Teaching Hospital, a lot of our children are in pain after sustaining injuries. Some of them are unable to walk. Some children will have to undergo surgery but because the clotting concentrate is not available, they can't undergo the surgery”.
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“For about three months, we don't have the medication. It is hard watch on as the bleed”, she added.
Hemophilia is a rare disorder in which blood does not clot in the typical way, as a patient could bleed for a longer time after an injury.
Mothers of children living with hemophilia count it a blessing when their wards make it through the day unhurt, especially in the absence of the blood components responsible for the clotting of blood.
Six years ago, Sandra Opoku’s newly born baby died after circumcision due to failure of the blood to clot.
Presently, her toddler has a similar condition but has continued to live due to the medical support received.
But as the shortage of concentrates linger, Sandra lives in constant fear.
"I don’t know what to do now. I harbor a lot of fear, anything is possible," she said.
Though the hemlibra which is one of the medications for the condition is available, the Factor VIII and IX concentrates remain crucial. These are slowly dripped or injected into a vein of a patient to improve blood clots when injured.
According to the Ghana Hemophilia Society, some children bleed profusely after being injured due to absence of the essential medications.
The concerned mothers are blaming the FDA’s delayed release of a document to access the medication from donors.
Irene Osei is a concerned member explains, “We don’t have some at the market to buy. All we do is to take authorization from the FDA so we can get the donor agency to bring them to us but we haven’t been able to secure one yet”.
They are calling for an intervention of stakeholders to halt possible deaths that may result from the situation.
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