As Uganda joined the world in observing World Spina Bifida and Hydrocephalus (SBH) Day on October 25, 2025, health experts and patients called on the government to accelerate access to lifesaving medications and strengthen prevention measures for the conditions.
Patients and medical practitioners said the government should ensure availability of SBH drugs, physiotherapy, occupational therapy, and assistive devices such as wheelchairs, crutches, and splints at all government health facilities.
France Nadonge, an SBH patient, urged authorities to add oxybutynin, a critical medicine that controls SBH complications, to the list of essential drugs available nationwide.
‘It is unfortunate that oxybutynin cannot be found in health facilities and pharmacies; we only depend on donors. Many patients fail to get assistance, which leads to loss of life. As the government puts efforts into distributing ARVs for HIV patients, it should use the same efforts for SBH patients,’ Nadonge explained.
Ms Phoebe Muntonyi, chairperson of the Spina Bifida and Hydrocephalus Association of Uganda (SHAU), called for mandatory food fortification policies to ensure adequate folic acid in local diets – a proven measure to prevent SBH.
‘We need to look into food fortification; the reason for high SBH cases is because the food we eat lacks enough folic acid. After establishing ministries and institutions, the government should follow up for success. We are tired of seeing cases rise every day,’ she said.
Dr Olive Nabiryo, an occupational therapist at Katalemwa Cheshire Home, which has been supporting children with disabilities since 1970, highlighted the need to expand physiotherapy, occupational therapy, and assistive devices to government hospitals and health centres.
‘We currently support about 6,000 children with SBH in central Uganda and reach around 1,200 patients annually through outreach clinics in Mubende, Hoima, and Kiboga,’ Dr Nabiryo said. She also called for a reduction of taxes on Pampers, which SBH patients require daily.
Government officials said steps are being taken to address the gaps. Dr George Upenytho, Commissioner for Community Services at the Ministry of Health, said the government is finalising a Rehabilitation and Assistive Technology Strategic Plan 2025-2031.
‘We shall focus more on prevention because we cannot cure the disease. We plan to roll out treatment at hospitals and specialised facilities and procure assistive devices for patients,’ Dr Upenytho revealed.
SBH remains a global concern. According to the World Health Organization (WHO), about one in 1,000 births results in spina bifida, while hydrocephalus occurs in 3 to 5 per 1,000 live births, leaving millions worldwide living with the conditions, influenced by maternal nutrition and geography.