One Rb World 2024 Shines the Light on Life-Saving Care: Highlights from Hawaii Day Two
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Monday November 25, 2024
Continuing our review of Day Two at the 7th One Rb World Conference in Honolulu, Hawaii, we explore critical life-saving advancements in global retinoblastoma care. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, delves deeper into the research developments, technological breakthroughs, collaborations, joyful child life, and uplifting survivor stories shaping a brighter future for all.
This is the final installment of our 3-part One Rb World 2024 Recap.
Part 1: Pre-conference social day, and One Rb World Day One.
Part 2: Our Day Two recap is a 2-page article, focused on:
- Page 1: Provision and access to life-saving care for all.
- Page 2: Advances in research and technology
Part 3: Our Day Three recap is a 4-page article, focused on:
- Page 1: Early detection and advocacy for prompt care.
- Page 2: Cure for all children, and preventing cancer spread outside the eye.
- Page 3: Keynote from NYT journalist, Pamela Paul; and global solutions.
- Page 4: Child life, patient engagement, and a massive Mahalo!
Daphne is all smiles at our popular conference photo booth!
Recapping Page 1…
In the first half of our Day Two recap, we explored the challenges of caring for children with retinoblastoma and their families across Africa, the Pacific, and all low and middle-income countries. We also explored the strides being made to cure more and care for all through collaborations, innovations, and personal stories of resilience. If you missed it, you can catch up on Page 1 to learn about the global strides in retinoblastoma care.
Paula and Grace Dillon, mother and daughter from Australia, have fun together with our festive props.
Rb Mom, Somer Stanley, says “I Love You” in American Sign Language, together with Rb survivor, Zaakirah Nayyar.
What’s New in Rb Research?
Jesse L. Berry, M.D., presented a new era of treatment for Rb patients – liquid biopsy or, as Jesse calls it, liquid gold. She first explained that “precision medicine” means taking the patient’s specific tumor information to dictate diagnosis, prognosis, or treatment. Retinoblastoma is behind the rest of the oncology world in this area because it is not possible to biopsy the tumor without high risk of spreading cancer cells outside the eye.
Jesse discovered it is possible to obtain key information from the aqueous humor (AH), fluid bathing the front of the eye. A small amount of this fluid is removed before some Rb procedures to reduce eye pressure. When Jesse began studying this fluid, she revealed the huge potential for precision medicine in Rb.
Since she and her team first described the use of AH as a liquid biopsy for retinoblastoma in 2017, there has been a flurry of research, expanding to a global collaborative study. Current results support the use of liquid biopsy to aid Rb diagnosis, prognosis, treatment decisions, monitoring treatment responses, and eye-specific outcomes.
In late 2023, CHLA became the first hospital to introduce liquid biopsy as a clinical test for retinoblastoma, finally bringing precision medicine to children and families. We’re excited to see how this new dawn of liquid gold will enhance care and cure for patients around the world!
Jesse addresses the audience during the “What’s New in Rb Research?” Panel.
Paula Belson, Ph.D. is Clinical Instructor of Anesthesiology at the Keck School of Medicine of USC; and Certified Registered Nurse Anesthetist at Children’s Hospital Los Angeles. She presented on health related quality of life in Rb survivors, and in particular, the neurodevelopmental effects of general anesthesia. Her doctoral thesis was inspired by questions from the parent of a child with Rb.
Paula found that in general health related quality of life scores, Rb survivors scored lower than healthy controls on physical function, with higher depressive symptoms. Though mental and physical health perception was similar to healthy counterparts. Survivors also had lower social support and self-esteem. None of these outcomes were related to anesthesia exposure.
Many Rb patients are repeatedly exposed to general anesthesia from a very young age because of eye examinations, imaging procedures, and treatments. Paula noted that most research involves older children and those with significant health issues such as heart conditions where complexities of the condition and its care may impact neurocognitive outcomes.
Her research used the Montreal Cognitive Assessment (MoCA), a screening tool that assesses for mild cognitive impairment, and can be adapted for blind and visually impaired people. It assesses executive function, short term and working memory, attention and recall, language and visuospatial skills, and time-space orientation.
Paula found that Rb survivors score lower than healthy controls in the areas of naming, attention, language, and abstraction. However, this was not seen when looking only at survivors under the age of three years.
She also found no relation to visual acuity, and only weak relation to chemotherapy treatment. But there was a strong relationship between MoCA scores, Socio-Economic Status (SES), and insurance coverage. Other research beyond Rb has identified a strong connection between SES and neurocognitive testing.
Paula highlighted her study was small at one center and we need more multi-center research, including how health disparities and difference kinds of anesthesia may affect neurodevelopmental outcomes.
Getting to grips with the anesthesia mask during the child life session at One Rb World 2017 in Washington D.C.
Our next speaker was Canadian Ophthalmologist and Ocular Oncologist Brenda Gallie, M.D. from The Hospital for Sick Children in Toronto, who additionally serves as the Medical Director of World Eye Cancer Hope Canada. Brenda told the story of how she and Rb physician A. Linn Murphree, M.D., brought the chemoplaque to children with retinoblastoma. This revolutionary chemo delivery system was imagined and developed over 15 years by Linn, a much loved retinoblastoma specialist who founded the Vision Center at CHLA and died in March 2022.
The tiny device is attached temporarily to the surface of the eye with a little surgical glue, and delivers a steady dose of chemotherapy directly to the tumors for around one month before being removed. In 2018, the chemoplaque received FDA approval, and the first child was treated with the device at SickKids in Toronto. –The child now has 20/40 vision in his treated remaining eye.
Many more children have been successfully treated since, and the chemotherapy dose and duration of plaque placement has been refined to maximize tumor impact and minimize side effects. The chemoplaque is currently under clinical trial at both The Hospital for Sick Children and Phoenix Children’s Hospital in Arizona.
Rachana Shah speaks on advancements in Rb research alongside her fellow panelists Jesse L. Berry, Paula Belson, and Brenda Gallie.
Our final presenter of the session was Rachana Shah, M.D., Assistant Professor of Clinical Pediatrics at the Keck School of Medicine, USC. She presented on the retinoblastoma work of the Children’s Oncology Group (COG). The world’s largest organization dedicated to child, adolescent, and young adult clinical cancer research unites more than 200 clinical research centers around the world, most of them in high income countries. Its work is supported by the National Cancer Institute.
Rachana noted that global collaboration for Rb is vital, and COG’s Rb group is working hard to break boundaries and involve more low and middle income countries.
She explained the different phases of clinical trial, their goals and purpose. She then reviewed six clinical trials conducted by the retinoblastoma sub-committee.
- Over several decades, four studies have examined efficiency and toxicity of different eye salvage therapies, refining evidence-based care.
- One Study examined survival in children with high risk (Group E) intraocular retinoblastoma after enucleation, comparing outcomes in children whose pathology showed high risk for relapse, and those with low risk pathology. The study found that when children with high risk pathology have chemotherapy after enucleation, survival is almost the same (96%) as children with low risk pathology (98% survival). Prompt chemotherapy clearly saves lives when children have high-risk pathology.
- One study examined treatment and survival for children with extraocular retinoblastoma. This study showed cautious hope of cure for children with cancer that has spread beyond the eye, though prognosis for children with cancer in the brain or spine is poor at only 28%, showing that prompt removal of a dangerous eye is vital to save the child’s life.
Rachana discussed the unmet needs of precision medicine in Rb research, including:
- Eye-specific prognosis.
- Monitoring response to therapy.
- Detecting residual disease at the end of therapy.
- Early detection of Rb relapse within and outside the eye, and second primary cancers.
- Toxic effects of treatment on the eye and whole body.
She acknowledged that liquid biopsy is an emerging tool in COG’s arsenal against Rb to improve cure and raise quality of survivorship. She closed with the future ideal of patient care optimized by liquid biopsy, ensuring the child is not under-treated and exposed to risk of relapse, nor over-treated with potentially harmful impacts. COG’s collaborative research community – and a lot of funding support – can make this idea real.
Watch the session, What’s New In Rb Research?
Tech Advancements in Patient Care
Maura Di Nicola, M.D., is an assistant professor of clinical ophthalmology at Bascom Palmer Eye Institute in the University of Miami, and scientific program Co-Chair for One Rb World 2024. Her insightful presentation touched on the role of AI in patient information, and how AI can be utilized to revolutionize this field.
Recently, AI has become a hot topic in ophthalmology for its versatility. It can help streamline screening, predict disease progression, interpret imaging, enable telemedicine, support education and teaching, and more.
The Large Language Model (LLM) AI systems like ChatGPT and Gemini are trained on vast amounts of text data to generate human-like responses.
Surveys suggest that between 1 in 6 and 1 in 4 adults under 30 now consult chatbots at least once a month for medical information and advice. Time constraints, difficulty accessing in-person medical care, information overload and memory shut-down at diagnosis all make LLM’s appealing to patient families seeking to understand and streamline information.
Maura and her research team wanted to know how effective LLMs are at addressing patient questions about retinoblastoma. They started by asking common LLM’s (ChatGPT-4, Copilot, and Gemini) a set of questions related to Rb, and compared their answers to answers received from Google, reputable medical sites, patient advocacy groups, and two ocular oncologists. Questions covered causes of Rb, symptoms, diagnosis, treatment options, and prognosis.
Maura noted that GPT-4 is a premium subscription service, reputed to give higher quality responses than GPT 3.5, the best public access version at the time of research. The researchers chose to work with the best possible option to test its potential.
Overall, LLMs performed well on accuracy and relevance, and moderately on comprehensiveness, with a risk for harmful inaccuracies, and a high education level needed to read and understand the responses. ChatGPT consistently performed the best, followed by Gemini, and Copilot had the lowest scores across all domains.
Maura gave examples of harmful inaccuracies generated by the LLMs, including:
- Linking certain chemicals and foods with causing Rb, or preventing it.
- No use, incorrect use, or no distinction between staging and group when describing treatments or eye and life prognosis.
- Use of hemolytic stem cell transplant (HLS) as a primary treatment for intraocular Rb. This is only used for high risk Rb spread beyond the eye – never for cancer contained within the eye.
Harm could also be caused by limited or missing information on topics including heritability, staging, treatment side effects, and what to expect after EUA and specific treatments.
Maura and her team now aim to develop a tool that can work with physician oversight to train LLMs so they can generate accurate, relevant, accessible information for patient families, and help keep the community safe.
A slide from Maura’s presentation on AI in Patient Care, showing harmful inaccuracies in responses provided by leading LLMs to common patient queries.
Ashwin Mallipatna, M.B.B.S., M.S., is Head of the Retinoblastoma Program at The Hospital for Sick Children in Toronto, and Assistant Professor at the University of Toronto. He opened his talk on 3D model eyes for early diagnosis with the sobering story of two children in India. A village photographer recognized the warning glow of Rb in the eye of a baby who’s Naming Ceremony he was documenting. He knew the glow because his niece died from retinoblastoma diagnosed too late.
Ashwin recapped the many challenges to early detection and diagnosis for both families and healthcare workers, and solutions in the last 20 years, including the Brazilian TUCCA TV ad, Honduras poster campaign, KnowTheGlow, PhotoRED project, CRADLE app, and Arclight Project.
He explained how 3D models can accurately mimic the eye, including unique ocular properties, racial variations, and disease specifics to support training. They can help train medical staff to assess the red-reflex, identify signs, and recognize the condition in patients earlier. They can also be used to educate parents and the public, test new technology, and develop solutions.
Conference participants present in Hawaii were invited to examine two 3D models throughout the day, using both a traditional ophthalmoscope and an Arclight ophthalmoscope. One model had retinoblastoma; the other had cataract – Ashwin revealed which during his talk, and highlighted how the models could help engineers design better imaging and treatment tools. Parents found the experience particularly fascinating, experiencing for the first time what retinoblastoma looks like inside the eye.
This was a really exciting interactive session, and a thoroughly modern and future-focused place to end the day’s program.
Watch the session, Tech Advancements in Retinoblastoma Care.
Meanwhile, In the Child Life Program…
Children ranging from infants to teenagers had a blast with WE C Hope Child Life Specialist, Morgan Livingstone and our many child life program volunteers. They attended hula lessons, a lei-making class, and story time organized by the hotel, allowing them to deeply connect with the rich culture and heritage of this special location.
The children enjoyed special visits with two young adult Rb survivors. Destiny Flood-DeJesus read her book A Little Superhero Fights Cancer, and Leia Hunt planned a party for the kiddos, hosted by her organization Leia’s Kids.
Destiny’s reading created opportunities for the children to share their experiences. She stayed to play and talk with them about their passions, answer questions, and share even more about her life and adventures.
Leia arrived dressed as Princess Marygold, and engaged the children in making crowns, shields, swords, and custom baseball caps, reading, and more. Her mother, brother, and sister-in-law helped out with the many fun interactive activities.
Our teens were blown away by the chance to make something so cool, and the littler friends lovingly created beautiful crowns for themselves and their family members. Everything (and everyone) was adorned with so much sparkle.
Rb survivors Leia Hunt and Charlotte together after Leia’s princess story time.
Medical play included coping with needles for blood draws, tactics for handling the removal of a prosthetic eye, and anesthesia. Activities also helped young patients, survivors, and their siblings talk about the big emotions that come in small packages during cancer treatment and beyond.
In making the conversation about these tough topics more light-hearted, Morgan found both the younger children and teens opened up about some of the challenges they face when going to Rb related appointments.
Our Child Life program offered children medical play opportunities with equipment, and specially designed medical play dolls to practice on!
WE C Hope’s Child Life Specialist, Morgan Livingstone, guides our child life kiddos in creating prosthetic eyes out of clay.
Wrapping Up Day Two
As our first full day of scientific programming concluded, we were overwhelmed by the camaraderie and support the conference fostered. Here are some reflections from our guests:
- Cat Paul, mom to 4-year-old survivor Charlotte: “World Eye Cancer Hope did an incredible job putting together One Rb World in Hawaii. It was full of incredible panels highlighting patient and family stories, advances in the field of Rb, the need for further education and advocacy of Rb in our own country as well as across the world, and the importance of child life programs among many others. Thank you to all who shared your experiences, expertise, vulnerabilities, and so much more. My heart is forever touched.”
- David Freyer, D.O.: “It was wonderful taking part in the One Rb World Conference. Thank you for all you continue to do for the Rb community – it just would not be what it is without WE C Hope. I am personally indebted to this organization for inviting me into the Rb world beyond the individual patients I have been privileged to care for over the years. This really is a special community, and I feel blessed to learn so much and be inspired by all its members.”
- Jenny Lee, mom to 12-year-old survivor Phoebe: “I just wanted to say THANK YOU for such an amazing conference. I didn’t know what to expect but I can tell you we (especially my 12-year-old daughter Phoebe) came back with a FULL heart and ‘bigger’ family. Feeling blessed to have met each and every one of you. Looking forward to the next ‘family reunion’!”
- Katherine Paton, M.D.: “I hope you are having a moment to bask in the satisfaction of organization superbly done, people encouraged and engaged, and momentum enhanced. A sense of greater community and well-being was pervasive.”
- Tim Valverde, Rb dad to 5-year-old Hunt: “This conference gave us hope, information and helped us realize we are not alone. To see people THRIVE who have battled this cancer sets a clear pathway for my son. It really was a life-changing experience.”
Rb Mom, Lori Padilla models a One Rb World t-shirt designed by Rb survivor Sena.
One Rb World 2024 – Part Three
Read for the final installment of this three-part series, in which we share the happenings from Day Three of the conference, including early detection, life and sight saving care, patient and family support, child life, and patient engagement in Rb care.
Spark Hope: Help Shine the ArcLight to Save a Child’s Life
Early diagnosis is the best cure!
Many of our Day Two speakers at One Rb World showed how most children struggle to access primary eye care, and how early detection is vital to save children’s lives.
We aim to provide 500 Arclight ophthalmoscopes across nine low and middle income countries in 2025, and low resource communities in the USA. Please join us in making this possible!
Giving Tuesday is December 3, 2024!
Donate today to equip healthcare workers with life-saving Arclight devices.
Each $25, $50, or $75 gift funds a high-tech solar powered Arclight ophthalmoscope, and training to examine children’s eyes and detect eye cancer early.
This Giving Tuesday and Holiday Season, please help us bring the life-saving gift of early detection to children in some of the world’s poorest countries and communities. Together we can save more precious young lives and families. Thank you very much!
About the Author
Marissa Gonzalez resides in Southern California and is an event director. She is a founding board member, and current President of World Eye Cancer Hope USA, and was Event Chair for the One Retinoblastoma World Conference in 2017 and 2021. In her downtime, Marissa enjoys travelling and going to Disneyland.
NYT Opinion | It Takes A Lifetime to Survive Childhood Cancer.
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