Over the last few years, KnowTheGlow has made a concerted effort to look beyond the borders of its home base in the United States. We have learned just how important it is to take a more global perspective and have sought to find those who are making a significant difference in blindness prevention and care around the world. The team at KTG has had the privilege of interviewing pediatric ophthalmologists, ocular oncologists, ocularists, retina specialists, ophthalmic nurses, and optometrists from around the world and it is clear that the common thread for all of them is the need for all to look beyond our own borders and to lead the way for those in other surrounding nations. When KTG had the chance to speak with Dr. Laurence Desjardins, she proved to be no exception. Dr. Desjardins has been the head of Ocular Oncology at the Institut Curie in Paris but her work now extends to the far reaches of both Francophone and Anglophone countries in Africa through the French branch of the International Networks of Cancer Treatment and Research (INCTR), the Alliance Mondiale Contre le Cancer (AMCC). Dr. Desjardins explained to KTG Co-Founder, Megan Webber, that when they started working in Africa in 2011, they would receive multiple calls from Africa because there were not many options for treatment in Africa. To complicate matters, treating these cases would prove very difficult because by the time transportation to France for treatment could be arranged, the tumors were often so advanced that the children would die.
It was at this tipping point when it became imperative to implement programs, starting in Francophone Africa, where care did not exist. The AMCC applied for a “My Child Matters” grant through the Sanofi Espoir Foundation and when selected as a recipient, they went initially to Bamako, Mali which had the advantage of having a large institute of ophthalmology in place which had originally been started by the French during the french occupation of Mali. Once in Bamako, they found an ophthalmologist willing to work with retinoblastoma cases in IOTA, ( Institute Ophthalmological Tropical Africa )and a pediatric oncologist in the pediatric unit of the Gabriel Touré Teaching Hospital. Dr. Desjardins and the AMCC worked with them in different ways; first, bringing equipment like lasers and ophthalmoscopes, then, launching early awareness programs using radio and television spots as well as posters throughout the country. They also trained those nurses and medical staff who would be in close contact with the newborns and infants in an effort to improve the diagnosis of retinoblastoma. Dr. Desjardins stressed to Megan that another large piece of the puzzle that was imperative to place was the need to encourage multidisciplinary work between the oncology specialists and the pediatric ophthalmologists. Without communication between these doctors, you cannot help children suffering from retinoblastoma.
Once this was complete, the AMCC then took the initiative to bring the ophthalmologists to Paris for a month of training. Finally, they would make sure to have a complete registration of the data collected so that they could then look to replicate the program in other countries. Using this model, Dr. Desjardins shared that they then went forward with their program to five additional countries including Senegal and Madagascar.
In 2018, seven years after their outreach had begun, the AMCC ran out of funds for the project. While they had made significant progress, the team was not satisfied and wanted to reach other countries and continue to improve the programs already in place. Fortunately, they successfully applied for and received additional grant funding and after stretching those funds for 18 months, they were connected with a wonderful Swiss Foundation that provided them with the fund that they desperately needed to continue their training programs. Dr. Desjardins was happy to report that thanks to this support they are now also in Anglophone countries and are, in total, working in 20 countries within Africa.
Every two weeks Dr. Desjardins and her team have web meetings to discuss cases and every year they have two large meetings with the Francophone and anglophone countries. The next meeting is set for December 1st in Kinshasa. Then separately they meet with the Anglophone countries. Although they have separate meetings, they are working hard to have the two sets interact with each other. Even with all of these efforts, the AMCC has made to improve the early diagnosis and treatment of children with retinoblastoma, it remains difficult still to find so many cases. Dr. Desjardins lamented that they still far too often encounter late-stage diagnoses and that 1 out of every 2 children diagnosed with RB arrives at the hospital too late for life-saving procedures. In addition to finding these children, there is also the socioeconomic problem of affordability of treatment. Even with a good team of trained doctors and the proper equipment, many patients simply do not have the money to pay even for the CT Scan. Without the CT scan, they cannot get the care they so desperately need. Relatively speaking the cost is nominal and, in 2021 and 2022 Dr. Desjardins has had the good fortune to have identified a donor who has provided her with 20,000 euros to pay for the treatment of these at-risk children. This means that 42 children were able to receive CT scans and have the treatment and when necessary, enucleations performed. This also means that thanks to this donor, an additional 42 lives have been saved.
Dr. Desjardins is always on the go and will soon be headed to the Cote D’Ivoire to help with laser surgery. She is working on receiving a grant to help obtain needed new equipment for the doctors she trained in Vietnam a decade ago. It is the tireless work of doctors like Dr. Desjardins that continues to inspire all of us at KTG and reminds us of the need to keep a global perspective as we continue to look for ways we can work together to achieve the elimination of preventable glow-related childhood blindness throughout the world. We will look very much forward to learning and sharing more in the future about the amazing work being done by Dr. Desjardins and her teams throughout the world.