Govt seeks mandatory sickle cell testing for all intending couples

Ministry of Health says the disease can be prevented when couples intending to marry and or have children know whether or not they have a sickle cell trait that can cause the disease.
The government wants to enact a law that would make it mandatory for all intending couples to first undergo sickle cell testing and counselling before marriage.
The move according to Dr Diana Atwine, the permanent secretary of the Health ministry, is aimed at reducing the prevalence of the disease in the country.
“Sickle cell disease is the most inherited disease worldwide. Out of the 500,000 children born every year worldwide with sickle cell, 80 percent are in Africa. As we talk about care, early screening, and treatment of sickle cell warriors, we must talk about pre-marital testing and counselling because 80 percent of the sticklers die before the age of five,”Ms Atwine said.
She further said once the mandatory testing is achieved, it would reduce the pain that many sickle cell anaemia patients go through when they undergo lifelong treatment.
Speaking as chief guest during the launch of “Integrated and scaling up sickle cell disease care in primary health services” at Kayunga Regional Referral Hospital yesterday, Dr Atwine said countries like Egypt had rolled back sickle cell prevalence because it has made it mandatory for every couple intending to get married to first test for sickle cell disease.
“Even when one is blinded by love after testing and they are found to be carriers and they decide to get married, they would bear the consequences when they produce children with the disease when they know it. We are reminding the public that we can fall in love, yes, but our mistakes as parents are causing pain to our children,” Dr Atwine stressed.
Under the programme, which is being piloted in Kayunga Regional Referral Hospital and will be rolled out to all regional referral hospitals across the country, all infants will be screened for sickle cell disease and those who have the disease will receive essential lifesaving care namely, timely childhood vaccinations, penicillin to prevent fatal infections and hydroxyurea, a drug that reduces sickling of blood cells to prevent complications of the disease.
The programme is being supported by the Health ministry in partnership with Baylor Children's Foundation, Uganda, Texas Children's, Makerere University, Mulago National Regional Referral Hospital, and Uganda Pediatric Association.
Dr Sophie Nakitto, the Kayunga Regional Referral Hospital paediatrician, said currently, 500 sickle cell warriors are under care and treatment at the facility noting, however, that they face a shortage of hydroxyurea.
Dr Ruth Namazzi, a lecturer and paediatric haematologist at Makerere University School of Health Sciences, said approximately 20,000 children are born with sickle cell disease in Uganda every year.
“The enormity of the scourge of sickle cell disease in Uganda and across Africa requires public health approaches grounded in primary health systems. We don’t have to build those systems from the ground up. Instead, this program is integrating sickle cell disease care in existing child health care systems to be cost-effective,” Dr Namazzi said.
She noted that like HIV/Aids, sickle cell awareness should be scaled so that the general public knows that the disease is not caused by witchcraft.
Dr Henry Mwebesa, the director general of health services in the health ministry, asked medical workers at the facility to mobilise parents with children with the disease to take them for treatment noting that the program is the first of its kind in Africa.
Likewise, Dr Catharine Grimes, the president of Bristol Myers Squibb Foundation, said early screening and treatment of children with sickle cell disease would reduce their pain and complications.
During the function, Dr Atwine also commissioned the construction of a sickle cell clinic at Kayunga hospital.
The function was attended by local leaders, clerics and medical personnel.
Justification
‘‘As we talk about care, early screening, and treatment of sickle cell warriors, we must talk about pre-marital testing and counseling because 80 percent of the sticklers die before the age of five... Even when one is blinded by love after testing and they are found to be carriers and they decide to get married, they would bear the consequences when they produce children with the disease when they know it...we can fall in love, yes, but our mistakes as parents are causing pain to our children,”Dr Diana Atwine, the permanent secretary of the Health ministry.