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Health Ministry links 20% child deaths to sickle cell disease
The Permanent Secretary of the Health Ministry, Dr Diana Atwine. PHOTO/ TONNY ABET
What you need to know:
- Sickle cell disease (SCD) is a serious genetic condition that can cause significant health problems. Carriers of the sickle cell trait, while not experiencing the disease themselves, can pass it on to their children, according to experts.
Dr Diana Atwine, Permanent Secretary of the Ministry of Health, is urging couples planning to marry to get screened for sickle cell disease before making their final decision.
“If you are a carrier [of sickle cell], don’t marry another carrier even if you fall in love because tomorrow that love will melt and you will suffer with sicklers in your home [that you have produced]. If you are a carrier, you can go and test so you can know,” she said.
She added that this would reduce the burden of Sickle Cell Disease (SCD) which she said accounts for one in five deaths of children below five years.
Sickle cell disease (SCD) is a serious genetic condition that can cause significant health problems. Carriers of the sickle cell trait, while not experiencing the disease themselves, can pass it on to their children, according to experts.
“Sickle Cell Disease (SCD) is contributing to a huge number of children dying before they reach five years. It’s contributing 20 percent of the deaths yet we are saying we want to reduce under-five mortality. How do we achieve this when more people are falling in love with [SCD] carriers and they are producing sicklers?" Dr Atwine asked.
She continued: "If you visit pediatric wards in our hospitals like Kayunga here, more than 80 percent of admissions, chronic admissions in that ward, are sicklers and they are very expensive to treat because this is a chronic illness.”
Dr Atwine made the remarks on Wednesday during a meeting with health journalists in Kampala. The meeting was meant to discuss birth defects, a problem she said is a big public health concern. The timing coincides with World Sickle Cell Day 2024, a day dedicated to raising global awareness about the disease.
Dr Atwine called for premarital screening and counseling on SCD to become standard practice. “Other countries do marriage screening; like how we used to do HIV screening before the clergy could preside over your wedding. Marriage counselling on SCD needs to be elevated to another level so that we start testing those who are intending to marry so that we can prevent it.”
Mr Daniel Roy Odur, the Executive Director of Catherine Phil Sickle Cell Support Initiative, said there is a need to reduce stigma against persons with Sickle Cell Disease (SCD) and also reduce the cost of SCD medicine –specifically hydroxyurea.
“We believe that by coming together through our amplified voices, we will raise awareness, reduce stigma and drive meaningful change for the millions affected by this disease,” he said.
“On this remarkable day, I send love, care and hope to all the sickle cell warriors and caregivers across the globe, with a special call to the Ministry of Health of Uganda, the World Health Organisation Uganda, Parliament and all pharmaceutical companies for access and affordability of hydroxyurea for our patients,” he added.
