In the heart of Uganda, where the challenges of pediatric oncology are both immense and urgent, a pivotal meeting took place between Dr. Pius Mwanja, the Head of the Department at Ruharo Mission Hospital Eye Centre, Helene Dameris, Global Outreach Director, and Megan Webber, Co-founder of KnowTheGlow (KTG). Their discussion centered on the ongoing battle against retinoblastoma (RB) in Uganda, where late presentation and limited information and resources significantly impact survival rates.
Dr. Mwanja is a Pediatric Ophthalmologist and Strabismus surgeon with an impressive academic background. He began his journey at Makerere University and furthered his expertise at Kilimanjaro Christian Medical University College. Currently, he works as a super-specialist doctor and researcher at Ruharo Mission Hospital and is a pediatric ophthalmologist with Christian Blind Mission (CBM) International. This organization is dedicated to improving the quality of life for persons with disabilities in the world’s poorest countries. His work is deeply rooted in these ideals, with a focus on pediatric eye care and retinoblastoma treatment in particular.
Dr. Mwanja’s mentor and predecessor, Dr. Keith Waddell, has been a cornerstone in developing eye care in Uganda. Dr. Waddell, originally from Britain but with a strong connection to Uganda, has been living in Uganda since 1964. He has worked in various roles across different Church of Uganda health institutions, including Medical Officer, Surgeon, Physician, Ophthalmologist, Researcher, Medical Educator, and Health Manager. His journey began as a general doctor in Kuluva and Kagando before he trained in tropical medicine in the UK and returned to Uganda to work as a leprosy doctor. After a decade, Dr. Waddell shifted his focus to ophthalmology, establishing Uganda’s first eye service in Western Uganda in 1982. At Ruharo, he treated difficult cases, conducted outreach work, and played a crucial role in training the next generation of doctors, including Dr. Mwanja who has been under his mentorship since 2001. Dr. Waddell also established a program in 2006 dedicated to treating children with eye cancer, laying the foundation for the comprehensive RB treatment services at Ruharo.
Since 2006, when Dr. Keith started pediatric cancer treatment at Ruharo Hospital, the facility was only able to offer enucleations, a surgical procedure to remove the eye, as a treatment for RB. However, with the help of collaborations, chemotherapy was introduced in 2009, a transformative event that improved the survival rate by 30%. Yet, even with chemotherapy, the survival rate for children with RB in Uganda remains around 60%, a stark contrast to the 90% survival rate in Europe.
The disparity is largely due to late presentation; many children arrive at the hospital when the cancer has already become extraocular, making even enucleation ineffective. The prognosis in such cases is grim, often leading to palliative care, where the focus shifts to ensuring that the children do not die in pain. Dr. Mwanja described the compassionate approach led by Dr. Waddell, who developed an end-of-life pathway to support these children and their families, including partial debulking of bulging eyes and the provision of prosthetic eyes to help survivors lead normal lives.
Ruharo Mission Hospital Eye Centre has become a vital referral center for RB, receiving cases from all over Uganda and even neighboring countries like Southern Sudan and the Democratic Republic of Congo. With 1,200 admissions and 110 new cases annually, the hospital has treated over 1,600 children since its inception. Their battle against RB is ongoing, with over 300 children currently under their care.
One of the key elements in managing this overwhelming caseload has been the support from CBM International, which has helped fund transportation and feeding, ensuring that nearly 100% of patients adhere to their treatment schedules. This support is crucial as many mothers, burdened by the demands of frequent hospital visits, might otherwise abandon treatment.
In addition to treating RB, Ruharo Eye Centre also handles other non-RB ocular diseases. Dr. Mwanja and his team, which includes nurses and ophthalmic clinical officers, have established collaborations with local universities and feeder hospitals to expand their reach. They also utilize media like radio and television to raise awareness about RB, an essential effort in a community where natural remedies often delay proper medical intervention.
Dr. Mwanja’s path to becoming a pediatric ophthalmologist has been one of dedication and continuous learning. He only qualified in this specialization last year after training in Moshi, yet his impact has already been profound. He continues to lobby for better resources and support, working closely with colleagues like Dr. Ann Musika and Dr. Racheal Angom, and welcoming help from organizations like KTG.
As the meeting with Megan and Helene drew to a close, Dr. Mwanja expressed his eagerness for future collaborations, particularly in the area of sensitization and early detection. The team from KTG, in turn, was inspired by Dr. Mwanja’s unwavering commitment to his patients and the innovative ways he navigates the challenges posed by limited resources.
The journey of Ruharo Mission Hospital Eye Centre is a testament to the power of perseverance, collaboration, and the relentless pursuit of better outcomes for children facing retinoblastoma. With the foundation laid by Dr. Waddell and the ongoing efforts of Dr. Mwanja, the future holds promise for improving the survival and quality of life for these young patients in Uganda and beyond.
