Advocates Urge Government Action on Tax Relief and Support for Spina Bifida and Hydrocephalus Patients

Pheobe Mutoni, Chairperson of the Spina Bifida and Hydrocephalus Association of Uganda (SHAU), called on the government to reconsider the imposition of an 18% tax on diapers as part of the Value Added Tax amendment for 2024/2025. Speaking during the commemoration of World Spina Bifida and Hydrocephalus Day at Mulago Hospital, she emphasized that this tax creates an additional financial burden for families already facing significant challenges.

The event featured a health camp providing free services and was celebrated under the theme: “Improving Lives, Celebrating Progress in Spina Bifida and Hydrocephalus Treatment and Rehabilitation in Uganda.” Mutoni urged the government to allocate more resources to treatment and rehabilitation services for individuals with disabilities and to officially recognize World Spina Bifida and Hydrocephalus Day on the national calendar. Such recognition, she argued, would foster awareness, reduce stigma, and promote rights and opportunities for those affected.

Mutoni also appealed to the public, NGOs, and government bodies to collaborate in establishing a solid foundation for accessing multi-disciplinary lifelong healthcare for individuals with Spina Bifida and Hydrocephalus. She highlighted the importance of financial support for interventions aimed at improving lives and the development of a national database to enhance care outcomes.

Statistics show that Spina Bifida affects approximately 11.7% of 10 births in Uganda and is frequently accompanied by Hydrocephalus, impacting over 8,000 individuals annually. Mutoni called for a fresh government survey to establish current statistics and create a well-coordinated national database, addressing the fragmented care and inadequate support that currently exist.

Dr. Peter Senyonga, a neurosurgeon at Mulago Hospital, reported that the hospital handles 10 to 12 cases of Spina Bifida weekly and at least four cases of Hydrocephalus daily. He urged families not to abandon children with these conditions, noting that both are treatable and preventable with proper prenatal care, including adequate folic acid intake.

Dr. Rosemary Byanyima, Executive Director of Mulago Hospital, stressed the need for increased funding and modern equipment for orthopedic workshops to better serve individuals with disabilities. She highlighted improvements in community support and reduced abandonment of children with disabilities, attributing this to enhanced awareness and the availability of assistive devices.

Byanyima pledged to continue improving services for those affected by Spina Bifida and Hydrocephalus, reinforcing the call for collective action to ensure a brighter future for individuals living with these conditions.