The Ministry of Health permanent secretary, Dr Diana Atwine, has pledged to lobby parliament for increased funding to scale up efforts to prevent and manage sickle cell disease.
Dr Atwine made the remarks on Febraury 9 during the launch of a nationwide mandatory newborn screening programme for sickle cell disease at the Ministry of Health headquarters near Wandegeya in Kampala.
She was accompanied by the director general of health services, Dr Charles Olaro, and the chairperson of the national task force on sickle cell disease, Prof Sarah Kiguli.
“I want to commend the support from our partners, including the media, Baylor College and clinicians and paediatricians who have worked to reduce the burden of sickle cell disease. However, we still need more effort and resources, and I will be asking parliament to allocate more funding so that we can continue this long fight,” Dr Atwine said.
She assured the public that screening kits would remain available in both government and private health facilities across the country and said the ministry would strengthen partnerships to increase public awareness on prevention, early identification, treatment and long-term care.
Dr Atwine also urged couples to undergo screening before having children, warning that failure to test exposes families to lifelong health and financial challenges associated with sickle cell disease.
Dr Olaro called on development partners to intensify their support, drawing parallels with the multi-sectoral approach used to combat HIV and Aids. He praised the media for advocacy, religious leaders for mobilising communities and cultural leaders for helping to reduce stigma against people living with sickle cell disease.
Prof Kiguli said Uganda continued to register high numbers of newborns with sickle cell disease and the trait, making early screening critical. She described newborn screening as an evidence-based intervention that would allow early enrolment into care.
“Every child identified through screening will be placed under care. This is a major milestone in developing strategies to reduce the number of children born with sickle cell disease in Uganda,” she said.
One caregiver, Dr Fortunate Achiro, gave an emotional testimony about the cost of treating sickle cell disease, revealing that she spent nearly Shs1 billion on treatment, including Shs500 million contributed by President Museveni.
Dr Achiro, who lost two children to sickle cell disease, said the condition strained her marriage and disrupted her family’s livelihood, including her children’s education.
She advised couples with sickle cell traits to seek counselling before marriage to make informed decisions.
