20,000 babies born with sickle cells annually

The Ministry of Health has said at least 20,000 babies are born with sickle cells annually.

The ministry called for more funding and for couples to embrace premarital counselling and genotype screening testing as one way of preventing it.

“Such a figure is alarming for a disease that can be prevented. We need to work on ensuring this number goes down and our children are born free from this disease,” said Dr Jessica Nsungwa, the commissioner of child health at the Ministry of Health, during celebrations to mark World Sickle Cells Day at the ministry headquarters in Kampala yesterday.

The Health minister, Dr Jane Ruth Ocheng, in a speech delivered by the director of clinical services, Dr Charles Olaro, said the ministry embarked on a sickle cell qualification exercise to understand the national needs for medicines diagnostics and what needs to be done.

“We will need to adopt a policy of premarital sickle cell counselling and testing. Also, more advocacy is needed, especially with the government, to have a vote for sickle cell intervention within the Ministry of Health annual budget”

Just as HIV/Aids tests are a mandatory requirement before the couples are joined in marriage in many churches, health rights activists and some religious leaders have called for mandatory genotype screening of couples to check the spread of the blood disorder.

Government too is in support of the proposal, saying mandatory sickle cell testing before marriage would reduce the disease’s high prevalence in the country.

According to the World Health Organisation, sickle cell disease is a genetic condition due to a haemoglobin disorder and inheritance of mutant haemoglobin genes from both parents.

The chronic and debilitating medical condition is caused by a defect in red blood cells.

Dr Charles Oyoo, the commissioner for non-communicable diseases at the ministry, stressed the importance of creating awareness about the disease.

“Today is the day when we raise awareness about sickle cells because we know how it is transmitted and for that matter, we need to keep talking about it because there are people who still believe it is caused by witchcraft. We need to demystify that perception,” he said.

Dr Nicholas Nanyeenya, the programme officer, sickle cells programme at the ministry of Health, said expensive treatment and scarcity of specialised equipment are a big challenge in the treatment of sickle cells.

Ms Carol Kakooza, a mother of twins, who were born with the disease, urged the government to make screening widely accessible so partners can get checked to avoid the prevalence of this blood disorder.

Ms Kakooza said her twin children underwent bone marrow transplants at one year and one of them was cured, while the other is still a carrier because the donor of the marrow was her mother, who has the sickle cells trait.

A bone marrow transplant is currently the only known cure of the blood disorder.