A new project to scale up essential lifesaving care for sickle cell disease sufferers and to reverse the current trend of the leading cause of childhood illnesses and death in Uganda has been kicked off in the country beginning in Kayunga district.
The Project known as Scaling Up Lifesaving Care for Children with Sickle Cell Disease (SCD) in Uganda is a joint venture undertaken by the US-based Texas Children’s Global HOPE Programme, Baylor College of Medicine Children’s Foundation Uganda, Uganda National Health Laboratory and Diagnostic Services (UNHLDS), Makerere University, Uganda Paediatric Association and Mulago National Referral Hospital.
The project is funded by Bristol Myers Squibb Foundation (BMS Foundation), an independent charitable organisation providing funding to kick start the programme intended to build on the existing primary health system in Uganda, to integrate and scale up access to essential sickle cell disease care in Uganda.
According to the Ministry of Health spokesperson, Emmanuel Ainebyoona, the programme is supposed to start in three regions including Kayunga, Lira and Soroti, and with availability of funds, it will roll out to other parts of the country.
During the commissioning of the project at Kayunga Hospital, presided over by the Ministry of Health Permanent Secretary, Dr. Diana Atwine on Monday, she said that the target is to have all infants screened and those found to have the disease to get lifesaving care including timely vaccinations, penicillin to prevent fatal infections, and hydroxyurea (a drug reducing sickling of blood cells.
Sickle Cell Disease is a severe hereditary form of anaemia in which a mutated form of haemoglobin distorts the red blood cells into a crescent shape at low oxygen levels. It is a leading cause of childhood illnesses and death in Uganda.
Uganda is said to be the fifth highest sickle cell burden in Africa, with 13.3% of children having Sickle Cell Trait (SCT) and 5,000-20,000 babies born with SCD each year, of which 80% die before reaching five years of age.
Dr. Atwine said the vision of the project is to end unconscionable suffering and childhood deaths. “As Uganda we are proud to be ground zero for rolling out a new day for these children, for the future of Africa,” she said.
The Director of Texas Children’s Global HOPE Programme Dr. Joseph Lubega said his organisation has trained many of the first African paediatric, and reaffirmed his organisation’s commitment to support the initiative.
“This is the beginning of bringing an end to over 8,000 cases of intolerable pain, disability and tragic death across Africa,” he said, thanking Bristol Myers Squibb Foundation for continued essential support to major health challenges affecting African children.
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Dr Dithan Kiragga the Executive Director for Baylor College of Medicine Children’s Foundation Uganda hailed partners for bringing together key players contributing extensive technical expertise to ensure the project’s success through improvement of service delivery for SCD.
And the President of the BMS Foundation Catherine Grimes observed that Ugandans in rural areas find a challenge accessing services and expressed hope that the initiative working with the Ministry of Health, will integrate early stage lifesaving interventions into primary health care facilities.
In 2023, an estimated 7.7 million people were living with SCD worldwide, with 80 per cent residing in sub-Saharan Africa. In Uganda, close to 20,000 children are born with SCD each year, according to a 2016 study published in the Lancet Global Health.
Survival rate in high income countries allows 90 per cent of affected kids to reach late childhood, nearly a half of those in Africa die before their fifth birthday.
There are no new systems being set up by the programme, but integrating SCD care in existing child health care systems, according to the Director of Health Services in the Ministry of Health, Dr. Henry Mwebesa.