Dr. Clare Gilbert, Mr. Richard Bowman and Dr. Aeesha Malik have been diligently working to increase global awareness and early detection of blinding and even potentially deadly childhood eye diseases (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5820629/). Based in London, their collective reach spans the globe from Latin America across Asia to India and Tanzania working to improve child eye health and advocating to make it global policy. They are up against other overwhelming global issues like Malaria and Tuberculosis which remain as two of the three deadliest infectious diseases, eclipsing the Covid-19 pandemic. As a result, eye diseases do not currently garner the attention they need even though if detected early they could prevent blindness or death in 80% of cases.
Megan Webber, Co-Founder of KnowtheGlow, was eager to learn about the pilot training module they developed in Tanzania targeting primary level eye care services for children under the age of 5. Consistent with the KTG awareness campaign, there are interventions that can be made to prevent avoidable blindness in children. Their goal was to see how they could educate reproductive health and child primary healthcare workers to check the eyes alongside routine immunizations and weight checks. (https://bmjpaedsopen.bmj.com/content/bmjpo/4/1/e000629.full.pdf) Dr. Aeesha Mailk , a Consultant Pediatric Ophthalmology Surgeon for NHS Chelsea and Westminster Hospital, explained that with their Global Child Eye Health Project in Tanzania, they took the IMNCI (Integrated Management of Childhood Illness) module, a well-established program by the WHO and UNICEF, and incorporated eye health which had never before been included in their child health program (https://www.youtube.com/watch?v=VEqODO7vYUQ&feature=youtu.be ). They provided the healthcare workers with detailed educational materials and course plans as well as training and use of the latest IAPB approved Arclight Scopes (https://arclightscope.com). With the help of the Ministries of Health of Tanzania they developed a training module in Swahili to augment regular training with education in eye care and red reflex examinations. Dr. Clare Gilbert, a Clinical Ophthalmologist with The London School of Hygiene & Tropical Medicine, shared that they conducted a feasibility study of the government health workers who completed the training and helped to then integrate the module into primary healthcare worker training. The Ministry of Health has elected to keep the training elements and embed them into their own child health program. The good news is that the training module has the potential to be quite scalable and could have a huge impact globally. The module could be modified to be used by child primary care workers in every country to help prevent children from needlessly going blind.
Mr. Richard Bowman, a top consultant and Adult and Pediatric Ophthalmic Surgeon at the Great Ormand Street Hospital, has also engaged with the rural communities in Tanzania where he was part of a study that provided Arclight Scopes to non-ophthalmology nurses during immunization visits to see if the scopes would successfully identify cases of Pediatric Cataracts and Retinoblastoma in children under age 5 (https://www.nature.com/articles/s41433-020-1019-5#Sec6 ). His team was surprised to find that they identified even more eye abnormalities than they had anticipated, especially pediatric cataracts. While a subsequent study to screen children did not result in the same results it can possibly be explained by nurses in the second study being charged with too many extensive screening requirements. Richard has since applied for a retinoblastoma grant in both India and in Africa to try to relate success in diagnoses with the early publicity and awareness of screening interventions. He plans to examine the efficacy of building awareness through mobile phones, traditional advertising, awareness posters/billboards, national help lines, and the radio. In particular, Richard explained that the mobile phone can be an extraordinarily valuable tool because mobile phones are quite common even in the most rural of areas.
Richard sadly explained that advanced retinoblastoma is more prevalent in Africa than in India. He described how cultural differences and beliefs have negatively impacted diagnoses. In Africa, mothers who have discovered the glow early in their babies and taken them to the doctor are often told it is nothing and to come back in a year. Richard believes there is hope that with better cultural understanding and increased awareness and education more children can be saved. Even in impoverished communities where there are not funds for treatment in Africa, there are good centers that can assist families and improve a child’s quality of life. Even for those children who have been given poor prognoses due to late diagnosis these centers can, at the very least, allow these children to die comfortably.
Anything we can do to help encourage the earlier diagnosis of eye diseases which can be identified through early vision screening is good and necessary, but Clare points out that after immunizations are done, there are still those critical years from pre-school through kindergarten where focus is needed. Often a parent will only take their child to a healthcare facility if they are sick and if the child is a girl there is often sadly even less motivation to get them to a doctor. This gap can only be addressed by health education so identifying those gaps is imperative and fuels Clare’s movement toward policy and evidence to advocate that these eye screenings be done by other community engaged healthcare workers, not just doctors.
In addition to the need for public awareness and training for nurses and healthcare workers, Richard also stresses the importance of medical education and proper global diagnosis of retinoblastoma. One of his colleagues, Dr. Ashwin Reddy, speculates that up to half of the eyes removed in India may not have been RB at all but may have been Coats’ Disease. There are also blood tests that are currently underutilized which can show RB heredity. Sharing genetic testing information with families could be quite valuable in educating Retinoblastoma families about potential risks and the need to be especially watchful.
Lastly, another promising avenue for rural communities in low income countries which continues to develop is telemedicine. Covid-19 may have temporarily closed down many camps in rural areas but the use of telemedicine around the world has provided a new way forward for proper diagnosis and patient assessments from great distances. Richard shared with Megan about an amazing Retinoblastoma advocate in Israel, Dr. Didi Fabian, an Ocular Oncologist in Israel whose latest venture involves virtual meetings with over 30 physicians and healthcare professionals from Pakistan discussing active Retinoblastoma cases with experts from India and Europe on a routine basis.
Dr. Gilbert, Dr. Malik and Dr. Bowman all remain extraordinarily committed to continued research and advocacy for early eye screenings on behalf of children 0-5 year of age. As the KnowTheGlow community has found, while some eye diseases may be individually rare, collectively they are far more common and deserve to receive more attention globally so that no child unnecessarily goes blind or loses their life when a simple eye screening could prevent such a fate. As these doctors so eloquently detailed, better education for individuals in the community, healthcare workers and community advocates, and even the physicians at the referred treatment centers are all areas where there is great potential for improved intervention! We are proud to highlight the work of these three amazing individuals, to offer them our support and to share with all we can the success of their continued research!