Health experts and persons living with spina bifida and hydrocephalus (SBH) have urged the government to speed up efforts to ensure the availability of lifesaving medicines and prevention interventions, as cases continue to rise in Uganda.
The experts say that access to essential SBH drugs, physiotherapy, and occupational therapy services, as well as assistive devices such as wheelchairs, crutches, and splints, remains limited in most public facilities.
Efrance Nadonge, an SBH patient, appealed to the Ministry of Health to include oxybutynin on the list of essential medicines for all government health facilities. Oxybutynin is used to manage complications linked to SBH.
“It is unfortunate that this drug is unavailable in most health facilities and pharmacies. We only depend on donors. Many patients fail to get assistance, which leads to loss of life,” Nadonge said, adding that the same effort applied in distributing ARVs to people living with HIV should be extended to SBH patients.
Ms Phoebe Muntonyi, the board chairperson of the Spina Bifida and Hydrocephalus Association of Uganda (SHAU), called for full enforcement of mandatory food fortification policies to ensure enough folic acid in foods on the market. Folic acid plays a key role in preventing SBH during pregnancy.
“The reason for the high SBH cases is that the food we eat lacks enough folic acid. After creating policies and institutions, the government should ensure proper implementation. We are tired of watching cases rise every day,” she said.
Dr Olive Nabiryo, an occupational therapist at Katalemwa Cheshire Home, said physiotherapy and occupational therapy services, along with assistive devices, should be extended to government referral hospitals and lower health centres to increase patient coverage.
Katalemwa has supported about 6,000 children with SBH in central Uganda, and provides rehabilitation to around 1,200 patients annually through outreach clinics in Mubende, Hoima, and Kiboga.
Dr Nabiryo further urged Parliament to reverse what she described as high taxes on diapers, noting that SBH patients use them throughout their lives.
“School-going children require diapers daily, yet some parents cannot afford Shs2,000 every day when they have other needs,” she said.
