By Kabuye Ronald
Following sustained outcry from stakeholders including medical professionals, parents, and people living with Spina Bifida and Hydrocephalus condition, the Government of Uganda through the ministry of health has taken a significant step toward including Oxybutynin among essential medicines provided free of charge to patients.
The Assistant Commissioner for Disability, Rehabilitation in the department of community health, Dr. Moses Muwanga, revealed that the drug has already been placed on the priority list and is now awaiting final approval by top management before it can be procured and distributed at no cost through government systems.
Dr. Muwanga shared the update while closing a three-day Training of Trainers workshop in Kampala. The workshop brought together participants from across the country including persons living with Spina Bifida and Hydrocephalus, parents, teachers, health workers, and social workers from the Eastern, Central, Northern, and Western regions. Participants were equipped with knowledge and skills and awarded certificates upon completion.
He explained that the government procures medicines based on priority needs. “Government cannot afford to purchase every drug, implant, or piece of equipment for all conditions. We identify the most critical needs affecting the majority and prioritize those,” he said. “For persons with Spina Bifida and Hydrocephalus, we identified Oxybutynin and catheters as essential. These have been presented to top management, and we are hopeful they will be fully incorporated.”
Oxybutynin is used to manage symptoms of overactive bladder, including incontinence and frequent urination. It belongs to a class of drugs known as antispasmodics, which reduce bladder muscle spasms. Extended-release forms of the drug are also prescribed for children aged six years and above with nerve-related bladder conditions such as Spina Bifida.
Ruth Nalugya, Executive Director of the Spina Bifida and Hydrocephalus Association of Uganda (SHAU), welcomed the development, describing it as a long-awaited breakthrough.
“For a long time, this has been our cry,” she said. “Without this drug, our children’s health, dignity, and well-being are compromised. We have relied on donations from Belgium, which are sometimes impounded by the Uganda Revenue Authority because they are not formally recognized.”
She added that government commitment would ensure both sustainability and accessibility. “Just as people living with HIV depend on ARVs, children with Spina Bifida depend on Oxybutynin. Administered through a catheter, it helps them stay dry, reduces infection risks, and prevents complications such as kidney failure, which has claimed lives.”
Nalugya also noted that oral Oxybutynin is less effective and comes with more side effects, reinforcing the need for broader access to appropriate forms of the medication. She applauded the Ministry of Health for the milestone and expressed hope for swift implementation.
Participants at the training also expressed appreciation for the knowledge gained and pledged to share it within their communities.
Joseph Lwanga, a health worker from Buwama Health Centre III in Mpigi District, said the training had reshaped his clinical approach. “We have learned that some urinary tract infections can be managed through clean intermittent catheterization rather than over-reliance on antibiotics. This will help reduce irrational drug use and improve patient outcomes,” he said.
Tom Patrick, a caregiver and teacher from Gulu City, emphasized the timeliness of the training. “We now have the knowledge to support fellow teachers, caregivers, and parents, and to empower children living with these conditions to become more independent,” he noted.
Martin Okwera, a journalist from Soroti District living with Spina Bifida, said the training had renewed his confidence. “I have gained knowledge that shows this condition is manageable. I will use my platform to increase awareness and advocacy,” he said, urging the ministry to expand outreach through radio programs and community engagement.
Oyirwoth Owen, a teacher and trainer, said participants’ expectations were met. “We gained practical skills, understood referral pathways, and shared experiences. We are now ready to return to our communities and train others,” he said.
Spina Bifida and Hydrocephalus are serious medical conditions requiring specialized care. Hydrocephalus involves a buildup of fluid in the brain, increasing pressure, while Spina Bifida is a birth defect in which the spinal column does not fully develop, exposing nerves and the spinal cord.
Prevention of Spina Bifida largely depends on adequate intake of folic acid before and during pregnancy. Treatment services in Uganda remain limited to a few specialized centers, including Mulago National Referral Hospital, Cure Children’s Hospital in Mbale, and Mbarara Regional Referral Hospital. The country currently has only about 12 surgeons trained to manage these conditions.
