Megan Webber, Co-Founder of KnowTheGlow, recently had the opportunity to “join” Dr. Michael Jones on his morning commute to work. Dr. Jones, a pediatric ophthalmologist in Sydney, Australia was driving to visit a patient family in a hospital across town and was excited to hear from Megan about KTG’s planned program for Oceania regarding public awareness of leukocoria. The message resonates very strongly with him given what he faces every day in his practice and he believes the message of glow awareness is both relevant and important to share to help safeguard pediatric eye health. As the call continued, Dr. Jones explained how retinoblastoma is truly a global issue that is ironically both a good and bad problem. It’s good in that it is being dealt with much more successfully than ever before in countries with modern resources but it is also a bad problem due to the giant disparity of access to care and treatment when looking at less developed countries. Dr. Jones stressed that when you do not have access to care, as in many low-income countries, advanced-stage disease presentation is more often the norm and the mortality rates are therefore far higher. Even assessing the true incidence of the disease is more difficult as so many of these advanced stage patients never make it to or through treatment. Additionally, even if the patient is diagnosed early in a low-income country, access to care remains the primary hurdle for families to overcome. With low resources, limited support, and a lack of means to travel or continue treatment the situation is quite dire. Still, knowing that like Dr. Jones, there are doctors in Oceania who continue to bring hope and positive energy into every conversation gives all of us at KTG hope for the future of families facing glow-related conditions in Australia, New Zealand, and Papua New Guinea.
Megan and the KTG Team are always amazed at the small world that encompasses both pediatric ophthalmologists and ocular oncologists. KTG medical advisory board member, Dr. Ashwin Mallipatna, preceded Dr. Jones as the Retinoblastoma fellow at the Hospital for Sick Kids at the University of Toronto in Canada where Dr. Jones studied with the world-renowned Dr. Branda Gallie. Dr. Jones’ first retinoblastoma patient in Australia was actually referred to him by Dr. Gallie. Ironically the patient referred was the child of a former patient of Dr. Gallie. Dr. Jones managed the treatment of that family and the many, many other families who have been fortunate to find their way to his care since then.
During his time in Canada and in Australia, Dr. Jones referenced many cases where the pediatrician has either forgotten or not taken the time to carefully check the back of the child’s eye during regular wellness checks resulting in advanced-stage disease by the time the child makes his or her way to Dr. Jones’ office. Dr. Jones stressed what a very important lesson it is for all people to learn about the glow.
After his fellowship, he came back to Australia. In the state of South Wales, Dr. Jones, and his colleagues, Dr. Craig Donaldson, and Dr. Li-Anne Lim have a really coordinated approach to Retinoblastoma cases along with the help of Sandra Staffieri (https://knowtheglow.org/interview-with-sandra-staffieri/). If there is a concern for a child, the doctors will share information with a multidisciplinary team and share all the resources so that they are all on the same page with a precise treatment plan for that specific case. He is currently active on two cases of retinoblastoma with children in Brisbane. It is imperative to him that he really knows his patients and that he is involved with every aspect of their care. There is only one patient in 12 years who has lost their life from retinoblastoma and in that case, the child had advanced trilateral retinoblastoma. Dr. Jones and his colleagues have such strong success rates because they have a really coordinated and tailored approach to their retinoblastoma plans for their patients. Ultimately, whatever the patient needs, will be achieved through team effort. In a perfect world, Dr. Jones would like to see that collaboration and equality of care translate into global RB patient care.
Regarding new treatment methods and individualized treatment plans in addition to Systemic Chemotherapy and Cryotherapy, Dr. Jones shared how he selectively incorporates the new option of intra-arterial chemotherapy (IAC). Dr. Jones shared that he sees how IAC can be safe and part of a select treatment plan but that you need to be careful about when you use it. Dr. Jones stressed that when evaluating any treatment protocol they keep the following at the forefront of their decision-making- First, Save the life, Second, Save the eye, and Third, Save the vision, in that order.
Dr. Jones wants to keep connecting with doctors around the world and he has trained fellows from Russia, Africa, Southeast Asia, and Malaysia. In a month he will be bringing on board a fellow from Cambodia through a program with Sight For All. KnowTheGlow applauds Dr. Jones for his continued pursuit of glow awareness and for the incredible access to timely quality care for each of his patients in Australia. We hope that he continues to work with those around him on the importance of providing awareness, proper diagnosis pathways, and access to quality individualized care.