In Santiago, Chile, Dr. Kenneth Johnson is at the forefront of pediatric and adult ophthalmology, working tirelessly to address gaps in early detection of paediatric eye diseases including retinoblastoma (RB), the most common eye cancer affecting young children. During a recent conversation with Megan Webber, Co-Founder of KnowTheGlow (KTG), and Helene Dameris, KTG’s Director of Global Outreach, Dr. Johnson shared his insights into the challenges and opportunities for raising awareness and improving detection of this life-threatening disease.
Dr. Johnson, connected to KTG through child life specialist Gemma Melisi in the UK, completed his fellowship at prestigious institutions like Moorfields Eye Hospital, Royal London Hospital and Great Ormond Street Hospital in the UK, where he worked with renowned specialists in retinoblastoma, including his mentor – Dr. Ashwin Reddy – Dr. Didi Fabian and Dr. Chen Wong. His expertise and passion for pediatric ophthalmology shine through in his work both in the public and private healthcare systems in Chile.
While Chile’s national health program mandates annual eye screenings for children at school, many retinoblastoma cases are still being diagnosed too late. Dr. Johnson explained that pediatricians sometimes miss early signs of RB, such as the characteristic “glow” in a child’s eye, simply because they lack the proper instruments. This troubling reality highlights the critical need for greater awareness among frontline healthcare workers.
Dr. Johnson emphasized that nurses and midwives are often the first to see children. He believes these primary care providers should be a focal point for awareness campaigns, ensuring they are trained to recognize early warning signs of RB. He also believes a coordinated effort that reaches both public and private healthcare sectors could have a meaningful impact on early detection and help avoid needless loss of sight in his country.
In Chile’s public healthcare system, patients mostly first visit a general practitioner before they access specialized care. The private system, in contrast, allows more flexibility in choosing healthcare providers. Dr. Johnson is connected with pediatric ophthalmologists across Chile and is optimistic about the possibility of launching a nationwide awareness campaign. He pointed to the Chilean Society of Ophthalmology (SOCHIOF), which has successfully raised awareness for conditions like amblyopia through National Amblyopia Day, an event marked by efforts across television, radio, and print media. However, large-scale public information campaigns about RB are still lacking in regular dates.
Technology is playing an increasingly important role in the fight against RB. Dr. Johnson mentioned the growing use of apps to detect “the glow” in children’s eyes. He also shared his enthusiasm for the ArcLight Scope, a low-cost diagnostic tool that he first encountered during a neuro-ophthalmology fellowship in Bristol, UK. He believes the Arclight could be transformative for medical education and early diagnosis of several conditions that impact the red-reflex in children.
Outreach remains a key component of many Chilean Ophthalmologists work. Voluntary programs take place every two to three months, bringing essential eye care to rural areas of Chile where access to healthcare is limited. Megan Webber echoed his sentiments about the challenges of accessibility, suggesting that parents could also capture “the glow” using natural light, such as by a bright window, to avoid relying solely on flash photography.
In his own practice, Dr. Johnson splits his time between public and private sectors. Seventy percent of his private clinic focuses on treating children, while the public clinic primarily deals with adult strabismus. All RB cases are referred to the children’s hospital, which works closely with Universidad de Chile in teaching specialty trainees in Santiago. For families who must travel to Santiago for RB treatment, the Chilean government provides transportation and housing support, with NGOs stepping in when additional help is needed.
Chile’s healthcare system provides access to critical treatments like cryotherapy, chemotherapy, laser therapy, and intra-arterial chemotherapy (IAC), but Dr. Johnson highlighted the need for better psycho-social support for families affected by RB. “It’s an area that needs attention,” he said, wishing that families had access to more comprehensive care, similar to what is available in other countries.
Dr. Johnson’s journey into ophthalmology was a serendipitous one. Initially interested in neurosurgery, he pivoted to ophthalmology after an award-winning rotation in Stockholm. It was his final residency rotation in pediatrics that truly captured his heart and set him on his current path. With his father, a cardiologist, as a role model, Dr. Johnson continues to honor his family’s legacy in medicine by making a difference in the lives of his young patients.
In recent years, optometry in Chile has also evolved. Technicians now perform eye exams, expanding the roles of orthoptists and optometrists, though there remains a clear distinction between ophthalmologists and optometrists, particularly in prescribing glasses.
Through his work, Dr. Johnson remains committed to improving early detection of RB in Chile. His collaboration with KTG and other organizations has the potential to create lasting change and save lives. Together, they hope to ensure that no child’s vision is lost to a disease that can be detected early with the right awareness, tools, and dedication.
