Know The Glow is proud to highlight the work of Poorvi Saxena from Pune, Maharashtra, India. Poorvi is a 2nd year Bachelors of Optometry student studying in Bharati Vidyapeeth Deemed University, Medical College School of Optometry in Pune.
She is interested in pediatric optometry and is looking forward to working with various organizations to expand her knowledge and spread awareness.
Hers was selected as the winning poster and she hopes to work with «Know the Glow» & «FocusVision5» more in the future! Congratulations Poorvi!!
View her poster below.
Poorvi Saxena Bio
Hello everyone, I am Poorvi Saxena from Pune, Maharashtra, India.
I am a 2nd year Bachelors of Optometry student and studying in Bharati Vidyapeeth Deemed University, Medical College School of Optometry, Pune.
I have a keen interest in pediatric optometry.
I am honored to be selected as the winning poster and hope to work with «Know the glow» & «FocusVision5» in the coming future.
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!
On behalf of the entire Know the Glow team, we are excited to announce that Austin is the winner of the 2nd annual «Navarrete Championship of Awareness Belt Award»! Austin is a true Superhero who is determined to share his experience fighting Retinoblastoma to bring hope and inspiration to others in their own life battles. We want to sincerely thank the Navarrete family who continues to support all the children battling RB in honor of their son, who is also a true RB Superhero!
Austin was diagnosed with Bilateral Retinoblastoma on May 13th, 2010. He overcame six rounds of chemotherapy, hundreds of cryotherapy, and hundreds of laser treatments as well as having local chemo directly inserted into his eyes. He fought hard for six years to be able to keep both eyes along with his doctors. But on September 9th, 2016 he had his right eye removed. Also in 2016 of November Austin was an inspiration to hundreds of people at an event for Camp Soaring Eagle. He told his story and was applauded with a standing ovation that came with many tears and cheers for overcoming his battles for life! A gentleman had also given him his award that he had received for being in the Army. Austin has managed to bring so much cheer and joy to others that feel life is not worth fighting for! He shows them that even though life has its ups and downs, and it’s very hard at points and times that you always have to stop and smell the roses! Austin also loves to write his own songs to help put into perspective how cancer affects children. People look at him with awe and ask are you sure he has cancer, are you sure he is legally blind and has limited vision? Austin loves to show off his prosthetic eye that has the Batman symbol for his pupil. He also loves WWE and has many children’s belts that he takes to every appointment to help him with his strength and courage! He has always wanted a real belt of his own that can show his fight to survive and his will to make the best of every day!
Every Tuesday, Megan Webber, Co-Founder of KnowTheGlow, starts her day with a 6:30 am zoom call with Dr. Himika Gupta and her team as they are winding down their day at 8 pm in Mumbai, India—which means Dr. Gupta is at the end of a very long and exhaustive day of seeing patients and surgery.
“It is all under control, you don’t want to know more.” is the light-hearted response Dr. Gupta gives her family when asked how her day was. In fact, the night before Megan’s most recent conversation with Dr. Gupta, she had been performing a midnight emergency surgery on a COVID-19 patient who had developed a rare fungal infection of the eye called a Mucormycosis that demanded immediate attention. Her work ethic knows no limits or boundaries nor does her compassion and commitment to providing the best care for every patient regardless of social status or financial ability.
Dr. Gupta was not raised in a family of medical professionals. She discovered her love of biology thanks to a beloved high school teacher with who she maintains contact to this day. Scoring at the top of her class on all the competency tests she went on to receive her MBBS (Bachelor of Medicine, Bachelor of Surgery) from the prestigious Seth GS Medical College and KEM hospital Parel in Mumbai. She then went on to receive her MS in Ophthalmology after her residency in Govt Medical College Nagpur(Central India). She thereafter began her innings in Ocular oncology at the LV Prasad Eye Institute (Hyderabad) as a research fellow in the National Retinoblastoma Registry under the Indian Council of Medical Research (ICMR). Thereafter, she trained at the KBHB Eye and ENT hospital in Mumbai and worked with the cancer genetics team at Tata Memorial Hospital, Mumbai. Her list of credentials, training, and expertise is extensive. She is currently affiliated with the B J Wadia Children’s Hospital (Parel) and NH- SRCC Children’s Hospital (Worli) for her specialized work in orbital plastic surgery and eye cancer.
(For a full list of Dr. Gupta’s credentials and education go to https://www.narayanahealth.org/mumbai/ophthalmology-paediatrics/dr-himika-gupta)
Early in her residency , Dr. Gupta witnessed how children with Retinoblastoma were low priority. Ingrained in her memory is the first patient she saw die from Retinoblastoma. It made an indelible mark on her and impacted the direction of her life and work’s passion. She explains that while many physicians choose to follow a path working with lucrative cataracts, she realized halfway through her residency that cataracts were not her calling. Always the overachiever, after finishing her work and duties as their ophthalmology resident, she would then go assist the plastic surgeons. This, too, made a huge impression on Dr. Gupta and helped guide her future choice to specialize in Ocular Oncology and Oculoplasty.
While at LV Prasad in Hyderabad, she became entrenched in some exceptional Ocular Oncology and Ophthalmic Plastic departments.
The next chapter of her life would take her to the other side of the world. An opportunity opened for Dr. Gupta and her husband to work in Canada. Pregnant with their first child, they accepted the challenge and traveled to Toronto. She further focused her interests when training in Canada, at the Hospital for Sick Children, the University of Toronto, and the Princess Margaret Cancer Centre. She additionally worked at the Ocular Oncology Service at Princess Margaret Cancer Centre (Canada). Highly sought after for her expertise and knowledge in the field of Ocular Ophthalmology and Oculoplasty, she was then forced to make a decision and to find a way to manage the hardest balancing act of all–new mother and full-time doctor. To this day, it was the most difficult decision she has had to make; turning down a coveted research post with Dr. Brenda Gallie at the Hospital for Sick Children in Toronto (https://knowtheglow.org/know-the-glow-interviews-dr-brenda-gallie/). Removing herself from India to see how patient care was managed in another country was extraordinarily helpful for both Dr. Gupta and her husband. Soon though, the pull of her homeland and worry about who would take care of the people of India brought Dr. Gupta, her husband, and their young daughter back to Mumbai.
With an evolved perspective from her work abroad, she brought to India even greater attention and sensitivity to treating each patient as a person and not just a diagnosis. The sheer number of patients in India often negatively impacts the quality of care the average person receives. For every 1 patient in Canada, there are 10 patients in India. Be that as it may, Dr. Gupta was determined to apply the standards she had observed in Canada and give more personal care and time to each patient she treated in India. “It is good to do Robin Hood work,”
Dr. Gupta stresses, “It is difficult to ignore the people in need.” She believes that each person, regardless of economic status, should receive the best care possible. She stresses that lack of compliance has less to do with education and much more to do with mentality. “You need to give everyone a chance and try not to be too quick to judge a patient.” It is easy as a doctor to give off the signal of “my way or the highway” but Dr. Gupta believes it is important to give each patient’s family the room to make their own choices – even if she may not agree with those choices – while still staying involved and guiding the patient to their best overall care and decision.
She also believes that good training is important, which is why one of the many hats she wears is that of a part-time professor (at MGM Medical College and University) so she can help to sensitize new doctors and medical students. She jokes that the older physicians won’t listen or change so it is vital to make an impact on the young and impressionable medical students.
In the urban slums of Mumbai, Dr. Gupta took the reins of Ophthalmology at the MRVC Urban Health center, which had the right team and the necessary equipment but needed assistance with the organization. With committed people and intuitive practices, they are able to serve many in the community. Dr. Gupta was able to accomplish several objectives for the center – a private clinic, a teaching hospital component, and also a charity component. Impressed by the work they were able to do she hoped to continue to train more people as she believes that India doesn’t always invest well in the support staff. While many institutions will have top-notch doctors and clinicians, they may not make the same effort to attract and continue to train the highest caliber nursing and support staff.
Focus Vision Five, her most recent collaboration, works on combining all of these wishes together and is a direct reflection of Dr. Gupta’s work in that it addresses multiple components. Her commitments include training nurses and healthcare workers, building their empathy, working with rural communities of India, and assisting with efficient referrals to ensure proper treatment and aftercare. Focus Vision Five will develop all of these elements. In its first phase, it will provide sensitivity training to medical students and in its second phase, it will provide training for health workers in India.
All of this Dr. Gupta does while simultaneously developing international collaboration and connectivity!
As a next step, Dr. Gupta would love one day to see a change in the screening of babies at well-child clinics where early detection of eye abnormalities is often missed due to a lack of red reflex testing on newborns. This is the next problem that Dr. Gupta would like to address. She also notes that her recent exposure to the Arclight, an inexpensive and portable version of the ophthalmoscope, would actually serve this purpose well. She was provided with some sample Arclights to use by Dr. Andre Blaikie (https://knowtheglow.org/dr-andrew-blaikie/)
and was extremely impressed with her experience. Dr. Gupta used them in the operating room as well as in fundus testing. She found them to be not only easy to use but also just as effective as the traditional ophthalmoscope without all the challenges of the latter. Such a device could be used in the well-child clinics to help catch early diagnoses of childhood eye problems.
Finally, Dr. Gupta shared that she really wants to reach out to those patients who have abandoned treatment. In 2019, she held her first workshop for social workers on Retinoblastoma. Her goal was to customize their counseling program. For example, in one group of 20 parents, not a single one even knew of the genetic component of RB. For this reason, she is working to train optometrists, nurses, and social workers on the importance of awareness, early diagnoses, and also genetic counseling.
For all of these reasons and many more, KnowTheGlow is proud to highlight the work and career of Dr. Himika Gupta and to collaborate with her and her incredible team on the creation of the Focus Vision Five training module for India.
Dr. Andrew Blaikie was fresh out of the cataract operating theatre in NHS Fife, Scotland when Megan Webber, Co-Founder of KnowTheGlow sat down to zoom with the ophthalmologist and senior lecturer at the University of St Andrews School of Medicine.
Dr. Blaikie came into focus for Megan Webber and KTG by way of Dr. Ramesh Kekunnaya, head of pediatric ophthalmology LVPEI Hyderabad. Dr. Blaikie shared that he found himself in Hyderabad as a lecturer at an international conference of the American Academy of Ophthalmology, and it was there that he introduced himself to Dr. Ramesh Kekunnaya. As our KTG community learned in our most recent article, Dr. Kekunnaya is a kind and generous colleague who offered to have Dr. Blaikie shadow him for 2 days at LVPEI. The seeds of their friendship flourished from this point on and is one that continues to this day as they collaborate on research and early detection of childhood vision problems. They have literally just this week had research accepted for publication in Eye Nature on the effectiveness of the Arclight in detecting eye disease in children in India.
It is through this “glowincidence”, as Co-Founder Megan Webber likes to phrase it, that we came to learn about the Arclight and about the groundbreaking sight-saving work that the Global Health Team at the University of St Andrews led by Dr. Blaikie is achieving. The Arclight is a low-cost, pocket sized, solar powered ophthalmoscope that can, in the hands of health care workers, revolutionize early detection and vision care in low income countries. Juggling the surgery, outpatient clinics, research and teaching demands of a full time clinical academic job in NHS Fife and the University of St Andrews Dr Blaikie admitted it can be hard to devote the time needed to deliver the implementation of the Arclight. It deserves a lot of time but with the support of a growing local and international team progress and traction around the world is being made. Dr. Blaikie was mentored by Dr. John Sanford-Smith in his first ophthalmology position and was exposed to his work via his best selling books on eye care in hot climates. Through Dr. Sanford-Smith, he was introduced to William J. Williams, an optometrist and helicopter pilot from Liverpool, whose brain-child was the low cost alternative to the traditional ophthalmoscope – the Arclight.
So, how is the Arclight used? Dr. Blaikie explains that it is a multi-purpose tool. A health care provider can examine the front of the eye, perform a red eye “retinal” reflection test and examine the back of the eye as well. Additionally, in the future it will be equipped to test for intraocular pressure for the detection of glaucoma. He shares that with the Arclight they have a very broad approach to eye care but that a major focus of the Arclight is in delivering the Red Reflex Exam globally. As an aside, Dr. Blaikie explained to Megan that he prefers to call it the Retinal or Fundal Reflection Test since in African and Asian children, the glow is more of a pale orange/yellow rather than the red glow that is detected in caucasians. This avoids confusion when teaching the technique and when practitioners are interpreting their findings in the field.
The Arclight is brilliant for its portability and ease of use. It can also attach easily to the back of a smartphone camera allowing a screener to take photos and videos of the front, media and back of the eye then utilize the software of the phone to store then send images for a second opinion or feedback for reinforcement of teaching.
As a consultant pediatric ophthalmologist, Dr. Blaikie keeps an arclight in his pocket at the clinics as his “go-to” ophthalmoscope. It is the small size and portable nature of this clever device that makes ophthalmoscopy more accessible to those in remote rural communities in Africa, where Dr. Blaikie consults, like the Rwanda Charity Hospital and potentially in the eye camps and Charity hospitals throughout India. Dr. Blaikie explains that clinical studies are showing that the Arclight is at least as good as traditional devices and perhaps even better in some ways. The International Agency for the Prevention of Blindness (IAPB) has listed the Arclight as one of the standard recommended devices for use in low and middle income settings.
For our KTG community, Dr. Blaikie explained to Megan how useful smartphones can be for capturing the Glow and gave tips on how to effectively use them. With a conventional camera, you may not be as lucky to capture the glow in your photos if you are too close to the subject. The further back you are from the subject the more likely you are to capture the glow in the image. With a conventional camera the flash is usually apart from the lens and in some cases with professional photography, completely separate from the camera. In these cases, the photographer is trying to limit the possibility of red eye. However, with our smartphones, the flash is usually right next to the lens and occurs simultaneously with photo snap setting up the ideal situation to capture the glow in photos. One should be careful to not activate the red-eye component on the smartphone, because doing so allows the flash to precede the snap of the photo which reduces the dilation of the eye obscuring the back of the eye. Taking a photograph in a dark room will also allow the pupil to be a bit more dilated helping to make the ‘red eye’ more obvious.
As a trained pediatric ophthalmologist, Retinoblastoma and ROP (Retinopathy of Prematurity) are close to his heart, but since they are rare they sometimes are not high priority in low income countries. The good news is that by looking for RB and ROP through the Arclight’s red reflex screening healthcare workers can end up doing a lot of good. There are a great many other eye problems that can be detected and corrected early in children with the Arclight. In many low income countries, Dr. Blaikie explains, there is the problem of “Cultural Inertia.” In some cultures, there can be an almost paralyzing lack of trust in doctors, so even if doctors put screeners in place to recognize the early clinical signs, they often do not have the approval of the patient’s family to move forward with formal diagnosis and treatment especially if it is news they don’t want to hear.
The Arclight shows great promise as a tool in the hands of rural healthcare workers. These workers can with time and effort be trained to a competent level within 2-3 hours on how to use the device, recognize clinical signs and then learn how to interpret and determine next steps. Dr. Blaikie has trained Ophthalmic Clinical Officers (OCOs) to do this in both Rwanda and Tanzania with promising results. In fact, in a recent study in Tanzania performed by a team from London, there was a much higher prevalence of cataracts found in the field than previous studies had projected. This new finding could be due to the screening being piggybacked onto regular and routine child health checks and the immunization program (which has greater access to the 0-5-year-old population) and utilizing the effectiveness and ease of use of the Arclight. Even during these difficult times with COVID-19, travel has ceased to Africa, but because Dr. Blaikie already had the use of the Arclight in place and practice eye simulations set up, his team has been able to continue training virtually using video conferencing platforms
In India, just before the start of the pandemic, Dr. Blaikie had the opportunity alongside Dr. Kekunnaya to run a workshop at the national neonatal conference. Once COVID-19 is behind us, Dr. Blaikie is considering working with Anganwadi workers and Auxiliary Nurse Midwives to include eye screenings in conjunction with their immunization programs in rural communities.
There is clearly a lot of work ahead but Dr. Blaikie does not seem phased by any obstacles. Instead, he is excited about the road ahead. Armed with education and awareness, an Arclight and the right team and partnerships he knows we can make huge strides together in preventing childhood blindness. Dr. Blaikie was quick to compliment Know The Glow on how approachable and impressive the KTG promotional and PSA materials are. He told Megan that he had huge respect for KTG’s efforts, reach and impact. Megan shared with Dr. Blaikie that sharing family stories has given families the confidence to act upon their instincts when it comes to recognizing issues with their children’s vision. While KTG has worked hard to create awareness of the glow in the US, missing early diagnosis of childhood blindness in the US is not nearly as dangerous as it is for many areas of the greater global community. It is by joining forces with communities around the world that we will be able to make a larger impact on preventing childhood blindness.
As the Country Director for Orbis India, you would assume that Dr. Rishi Raj Borah has an origin story similar to that of many pre-eminent advocates leading the charge in the early diagnosis and treatment of childhood blindness; but Dr. Borah’ story is more a tale of action inspired by compassion. Dr. Borah began his career as a veterinarian but had always wanted to engage with organizations that were associated with children. When he graduated, he had become very involved with the community volunteering organizations that would venture out in the evenings to find and help groups of children sleeping on the streets. Often, as part of his work in these organizations, he would bring them blankets to endure the harsh weather, some food and hygiene kits. He would also sit with them and understand their stories. On one such evening, Dr. Borah found himself sitting peacefully with a child. He glanced just beyond the child to see a cow tenderly nestled in with her calf fast asleep by her side. At that moment, it struck Dr. Borah that animals were capable of taking better care of their young than humans. He dug his heels in deeper with his volunteer efforts with organizations that focused on outreach to children through various organizations, ultimately leading to his present position at Orbis India where he has been actively working for these past 14 years.
Co-Founder of Know The Glow, Megan Webber, engaged Dr. Borah with background on the mission of KTG and in return Dr. Borah elaborated on the origins of Orbis. The Orbis Flying Eye Hospital came into being in 1982 as an alliance between medicine and aviation. At the time they were the world’s first fully functional teaching eye hospital. With this global capability, they were able to go into developing countries to bring awareness, education and training to healthcare providers in remote areas for screening and treatment. Over the years, Orbis realized that while they continue training programs on-board the Flying Eye Hospital, they should begin in-country programs. So, it was in 2000, Orbis began its journey in India.
Dr. Borah explained that when the office was first established in Delhi in 2000, with support of representatives from Government of India, WHO, IAPB and other leading eye care organizations in India, Orbis decided what its focus would be in the country. They concluded that childhood blindness and corneal blindness need to be prioritized in India. At that time, with a population of 1 billion, India needed 100 Children’s Eye Centers (CEC) as per the WHO recommendation of one center per 10 million population. In 2002, the India Childhood Blindness Initiative (ICBI) was launched with the first Orbis supported Children’s Eye Center at Dr. Shroff’s Charity Eye Hospital in Delhi in 2004. Ever since, their network of CECs has grown to 33 Children’s Eye Centers across 17 states. During its initial years, Orbis also supported the establishment of three Pediatric Ophthalmology Learning and Training Centers (POLTCs) in order to bring the concept of pediatric ophthalmology teams and pediatric ophthalmology as a distinct sub-speciality to the fore.
While Dr. Borah is proud of the progress that has happened in such a relatively short period of time, he still has concerns about availability of adequate human resources to accommodate every child’s eye care needs. Multiple healthcare providers or aides are often required to engage with each child and get them diagnosed early enough to reverse or correct any vision issues. Therefore, there is a great need to train and create a robust pediatric ophthalmology team. Under the India Childhood Blindness Initiative (ICBI), Orbis India’s flagship program, one year fellowships for pediatric ophthalmologists, six-month fellowships for optometrists as well as additional training for pediatric counselors and nurses are undertaken. Even in the rural setups, there is a great need to train the Anganwadi workers and the ASHA (who are primarily the immunization nurses) to recognize the problems early on in the targeted population of children 0-6 years of age. This age group is largely missed since they are not school age where some vision screening is being done and if their vision impairment precludes them from participating in school, they are often not sent to school at all.
In fact, in 2016, Orbis started its REACH (Refractive Error Among Children) program to screen school children for any ocular problems including refractive error. In just three years, they have been able to screen over 5 million children.
Yet, Dr. Borah explains, while Orbis India has been able to set the stage for better structure and treatment facilities, the bigger problem that the eye care community is facing across all of India is referral compliance. Getting children to the tertiary centers is a challenge. So what can we do? Dr. Borah stresses the importance of creating awareness with the parents so that they can get the children properly diagnosed and treated. Orbis India needs these effective communication tools for communities so that they can take up the issue of vision care at a very early age hence the need to help parents in rural areas understand how important it is to detect eye care problems. But how can you provide community messaging that will not scare families but instead make them take eye care more seriously?
This is the gap where Megan and Dr. Borah would like to explore a potential collaboration between KTG and Orbis India. There is a lack of effective communication materials to educate the families who are the most likely to notice a vision problem in these early years of development. It goes without saying that if the community does not read the promotional materials then the education is without effect. Know The Glow has, at its core, a simple message and wonderful materials that could be utilized at the grassroots level where families can be educated in the early detection of vision problems.
An eternal optimist, Dr. Borah likes to see that with every obstacle a new path can be created. While the screening and outreach activities have been halted due to COVID-19, a better option has emerged—house-to-house screenings. When the schools are safely open again, screening will one again commence; however, there is not good spectacle compliance in the schools where children are screened because there is minimal parent contact. By the time the child returns home, the notice that the child needs spectacles is often not received. But when house screenings are conducted, health workers would immediately involve the parents in their child’s visual health. The strategy is to reach out to the children in the home, which gives service providers the opportunity to provide vision screenings as well as creating awareness among families about vision care. Additionally, Dr. Borah sees great value in family screenings, which will allow healthcare workers to learn a lot more about the demographics. For example, if workers see multiple visual impairment cases in one family, they will be able to recognize any trends of similar eye problems within a family line or even a community.
Megan and Dr. Borah look forward to continuing their conversation as they seek paths to collaborate in pursuit of their joint mission — helping to find children aged 0-6 years, and guide them to visual care, so they can see their way to a bright and beautiful future.
Childhood blindness in India is estimated to be five times as that seen in the developed world. For that reason, KTG is making a concerted effort to reach out to medical professionals in the country to better understand how to reach these children and increase early detection of the red glow in the eye. Sadly, COVID-19 has impacted some of the strides India has made in early detection, negatively impacting the many eye screening programs in rural and urban areas. Many government resources have now been diverted to aid the COVID-19 efforts; but that has not stopped Dr. Ramesh Kekunnaya and his colleagues at L.V. Prasad Eye Institute, Hyderabad as he continues to explore digital screening and tele-ophthalmology to reach the most vulnerable communities.
KTG co-Founder, Megan Webber, had the opportunity to speak with Dr. Ramesh Kekunnaya, Head, Pediatric Ophthalmology, Strabismus & Neuro-ophthalmology, , Hyderabad (https://www.lvpei.org) about the unique circumstances surrounding the diagnosis and treatment of childhood blindness in India during this unprecedented time and going forward. Together they discussed how education and access can bring about earlier diagnosis and detection in India’s youngest population and how India can teach the next generation of health care providers so these children do not go undetected. L.V. Prasad is the epicentre of preeminent eye care in India with 33 years’ experience, with four children’s eye care centers, 20 secondary centers as well as 200+ vision centers. Despite L.V. Prasad’s best efforts, a few of the most vulnerable children are still missed. Dr. Kekunnaya stressed the importance of the strategic placement of centers in rural areas, so they are able to bring care even to villages and not just big cities where they already have resources. People in rural communities are weary of visiting bigger cities for eye care. Loss of daily wages is an issue as well. They bring their children to cities only for major eye ailments and are often too late for any significant recovery of sight. Rarely do you see a pediatric ophthalmologist like Dr. Kekunnaya and his colleagues at L.V. Prasad, who are eager to educate and bring awareness of the pediatric ophthalmology subspecialty to medical and nursing schools, so that they can increase the detection of early childhood eye disorders. Furthermore, Dr. Kekunnaya stresses the need for secondary centers to work alongside basic health care workers for better early detection, and better mother and child health screenings.
Dr. Kekunnaya explained that one of their challenges is to perform surgery for children with cataracts. Delayed presentation is a significant problem. In western countries, cataracts are diagnosed within the first weeks of life, whereas in India, diagnosis and referrals are often delayed, sometimes as late as when the child is 3 years old or even older, and the damage might be more permanent. He and his colleagues recognize that late diagnosis leads to the impact of the overall wellness of a child. When you have children coming in at the age of 6 or 7 years, with a diagnosis of cataracts, the effect of no sight and no learning for so many developmental years is debilitating. Dr. Kekunnaya’s team are looking additionally for ways to rehabilitate such children once their surgeries and follow ups have been completed. However, getting a child diagnosed with cataracts early and getting them the needed cataract surgery does not completely solve the problem. For full recovery of the child’s vision, it is vital to have regular follow up visits for spectacle renewal, eye pressure checks, etc. For this reason, it is essential for the local healthcare worker to keep the child and their parent engaged in the continued care required to achieve the optimal results of the cataract treatment.
Dr. Kekunnaya explained that the model used in these vision centers is the 3 R’S: Recognition of the eye condition, Refraction and prescription of appropriate spectacles and Referral of cases to secondary and Tertiary centres. Ultimately, Dr. Kekunnaya’s greatest desire is to increase the incidence of early detection in children by training and education at all levels. Delving deeper in the issue, Dr. Kekunnaya explains that there are neither adequate children’s eye care centers, nor adequate pediatric eye care specialists in India. In order to be effective, he believes there needs to be a push to use simpler methods to train people at every level to detect eye issues and the red glow. This includes school teachers, anganwadi health workers, paramedics, and professionals like pediatricians.
Megan was fascinated to learn about the Arclight scope which was developed by a Scottish friend of Dr. Kekunnaya. (https://arclightscope.com/) This device is cheap and can be worn on a lanyard and is therefore extremely portable and can be used to detect the red glow. Implementation of this device in rural and urban areas with an influx of trained volunteers / health care professionals could lead to an abundance of early detection in these communities.
The red glow test is not usually carried out in early stages of screening and this must change to become a first line test. KTG can help change this, by spreading awareness about the “glow” through social media. Together KTG and Dr. Kekunnaya will continue to explore ways to increase early detection of childhood blindness disorders by teaching graduating students and local health workers in pediatric ophthalmology about basic red glow screenings, and by cultivating impactful partnerships in the country.
We want to give a huge shoutout to CBS This Morning for sharing the vision-saving technology ‘Cradle’. We hope the millions of viewers of this clip are now aware of the glow and will download the app if any suspicions arise in their children’s photos.