Storytelling for Life: Global Solutions and Lifelong Care at One Rb World 2024 Day Three
Page 3 of 4
Monday December 9, 2024
As the 7th One Rb World Conference in Honolulu, Hawaii, reached its final hours, personal insights and global initiatives took center stage. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, reflects on the collective mission to save lives, including The New York Times Opinion feature, “It Takes a Lifetime to Survive Childhood Cancer,” – and the story behind the article.
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!
Opinion columnist at The New York Times, Pamela Paul, delivers her keynote address.
Recapping Page 2…
The second page of our Day Three recap delved into groundbreaking approaches to retinoblastoma treatment and survivorship care. From discussions on high-risk pathology to emotional survivor stories and cutting-edge research, these sessions underscored the importance of early detection , precision medicine, and resilience to save precious lives.
If you missed it, visit Page 2 to explore these transformative insights.
From Treatment to Triumph: Seeking Cure for All at One Rb World 2024 Day Three | Page 2
“It Takes a Lifetime to Survive Childhood Cancer”
Keynote: Pamela Paul.
The final keynote of One Rb World 2024 was given by The New York Times Opinion Columnist and former Editor of The Times Book Review, Pamela Paul. She first approached the subject of pediatric cancer not through a personal connection but as a journalist.
After beginning her research into childhood cancer many years ago, her goal was clear. She wanted to create a story that would resonate with readers, and reach those “who might not necessarily have direct experience with cancer, but who can read it in a way that is as meaningful to them as it was to me when I first began my research.”
Unexpected twists in the road forced Pamela to step away from this story for a few years, but she was determined to return. She shared:
“I wanted to write a story about the way in which pediatric cancer affects not just the patient, but the entire family. I also wanted to write about the idea that illness doesn’t just exist in a moment in time – it stays with a person, and becomes part of the person, and part of the family’s story and legacy that never goes away, for good or for ill, for the rest of their lives.”
Connecting with the Retinoblastoma Community
Researching and interviewing survivors, Pamela connected with me as President of WE C Hope. She credits our early conversations for unlocking the kernel of her story’s argument.
Through my personal insight and what I shared of our community, Pamela concluded that retinoblastoma and its treatment must be studied over the lifetime. She said:
“This could, and perhaps should, be a model of care to approach medicine in this country. Not as a moment in time, even holistically, but as a lifelong process. We can’t look at medicine as a before and after. There isn’t an end to the story, even after the patient is cured or deemed cancer-free.”
Our conversation led to the 2023 publication of Pamela’s article, “It Takes a Lifetime to Survive Childhood Cancer” in the Sunday Opinion section of The New York Times. A captivating story recounting my lifelong battle with cancer, and the wider survivorship challenge.
This achievement and our growing friendship allowed Pamela to truly enter the Rb community, where she hopes to continue to advocate, learn, and contribute.
Concluding her time at the conference podium, Pamela said:
“I think all our stories are additive to this greater narrative; they all work in concert. I hope my story contributes to that, but it is far from the only one. All of you here have stories that need to be told.”
Watch Panela’s Keynote Address, It Takes a Lifetime to Survive Childhood Cancer.
Global Rb: Perspectives from Across the World
Damilola Bello, Membership Services Manager of the International Agency for the Prevention of Blindness (IAPB), illustrated the efforts and goals of IAPB in a thoughtful pre-recorded presentation. She explained how diverse members (NGOs, universities, hospitals, research centers, professional bodies, and private sector companies) compose this great alliance, spanning over 100 countries.
IAPB “aims to work collectively with their members to end avoidable sight loss; and make eye care affordable, accessible, and available to everyone everywhere” by working in four key areas:
- Influencing and shaping policy.ampaigning for greater awareness.
- Data and knowledge.
- Connecting networks.
Focusing on campaigning, Damilola introduced IAPB’s Love Your Eyes campaign, which is all about raising awareness and covers four main areas:
- Prevention.
- Early detection.
- Overcoming stigma.
- Empowerment.
IAPB’s significant global reach makes this awareness effort uniquely powerful. The alliance is “able to call on the public, business, decision-makers, and policy-makers to make eye health a priority.”
Drawing upon this campaign, IAPB celebrated World Sight Day 2023, which, according to Damilola, “was by far IAPB’s biggest and most successful yet.” The outstanding impact of this campaign continues to touch lives and hearts worldwide as IAPB prepares for next year’s pivotal, transformative movement.
Artie, the adorable glow awareness mascot – a collaborative creation by IAPB and KnowTheGlow for the Love Your Eyes campaign.
St. Jude Global Retinoblastoma Program
Rachel Brennan, M.D. is Director of Pediatric Oncology/Hematology at Logan Health Children’s in Kalispell, Montana, and formerly a retinoblastoma oncologist at St. Jude Children’s Research Hospital. She told us about the St. Jude Global Retinoblastoma Program, where she serves as a Contractor. She focused on their strategies for improving early diagnosis and strengthening capacity to treat diagnosed children.
The program unites St. Jude faculty and Global Rb Advisory Group members across 36 countries, with three priorities:
- Needs assessment – understanding current capacity.
- Early diagnosis – working together to achieve more early diagnosis.
- Tumor boards – multidisciplinary teams assessing diagnosis, management, and care outcomes.
Rachel stressed the importance of increasing early diagnosis, and how integral it is to saving patients’ lives around the world.
The “Early Diagnosis Working Group” has representatives from Mexico, Central and South America, Sub-Saharan Africa, the Eastern Mediterranean, India, and Asia-Pacific regions. They discuss the challenges and develop solutions, and acknowledge “one size does not fit all” when it comes to the “best approach” for early diagnosis.
The group found five main challenges to curing Rb:
- Education.
- Regional capacity (personnel, workforce, equipment).
- Referral network.
- Governmental policies and priorities.
- Limited collaboration for funding and resources.
The working group is creating and adapting various toolkits to help centers address these obstacles as part of the “Early Diagnosis Campaign”. For example, in the area of education:
- Resources with widespread use like translatable infographics are adapted for different target audiences (parents, teachers, faith leaders etc.).
- Email and presentation templates organize information to strengthen the message.
- Guidance graphics support the campaign’s leaders and educators.
Tackling Extraocular Retinoblastoma
One very insightful presentation came from panel moderator , Bhavna Chawla, M.D., Professor of Ophthalmology at the All India Institute of Medical Sciences in New Delhi, India.
Bhavna spoke about the burden of extraocular disease, especially in low income and lower-middle-income countries where many children have cancer outside the eye at diagnosis. She described how the global Rb community can help save more children.
The medical community is making strides to tackle this global issue. Increasing awareness so fewer children have extraocular disease at diagnosis, and combining enucleation, chemo, and radiation therapy to successfully treat more children when cancer has spread.
Despite the progress in treatment for extraocular Rb, patients still face significant barriers. Especially in India, where Bhavna acknowledged, “There are very few centers that have the facilities to treat these complex cases.” She closed with an uplifting message, encouraging everyone to increase their awareness efforts and work together to improve patient care worldwide.
Dr. Bhavna Chawla from the All India Institute of Medical Sciences moderates the Global Rb Panel.
Measuring Treatment Effectiveness with Swimmer Plots
Brenda Gallie, M.D. is an Ophthalmologist and Ocular Oncologist from The Hospital for Sick Children in Toronto, and also serves as the Medical Director of World Eye Cancer Hope Canada. She introduced a fascinating new approach to managing patient data from clinical trials, and measuring treatment effectiveness
The DEPICT Health system records patient timeline data about medical events, such as the time, date, and specific medical procedure. Brenda showed how, using Swimmer Plots, her team can now place patient data side-by-side, allowing direct comparison and analysis. This was not previously possible.
Brenda’s team wanted to know the lifetime impact of each treatment option. So they added a Consequence Score, to be completed by parents and patients. Categories include physical and health impacts; effects on quality of life, education, employment and career opportunities; and psychological harm. The audience were invited to enter their consequence scores in a live survey demonstrating the tool.
This revolutionary system records every medical event patients undergo, and estimates the impact of each treatment throughout life.
Combining Swimmer Plot and Consequence Score data, the system can calculate the propensity score of previous patients – the probability they would receive the treatment being studied.
Moving forward with retrospective controls matched to prospective patients (children in current clinical trials) gives Brenda and her team an alternative to randomized controlled trials. With controls, they can more easily identify patterns in the disease and its treatments, with greater potential to improve and replace current treatments.
A Low-Cost Leukocoria Detection App
Maria Mánquez-Hatta, M.D. is an Ophthalmologist and Ocular Oncologist located in Santiago, Chile, and Chair of the Membership Committee and Secretary for the Pan-American Ocular Oncology Group at ISOO. She shared how a leukocoria detector app is advancing care.
Maria explained that late diagnosis is the main barrier in the Latin American Rb community. She frequently sees children with advanced intraocular disease requiring long, intensive treatment. Side effects are significant, and children often still have enucleation
To combat this, Maria and her team developed M.D. EyeCare, a photographic app that unlocks the genius of cell phone cameras to spot abnormalities in the eye. The “red reflex” is a valuable eye exam tool that the camera cannot assess when Red Eye Reduction is turned on.
Over numerous iterations, the app has successfully captured red reflex and identified early stage leukocoria, where regular photos with the phone’s camera failed to detect either. Supported by artificial intelligence, this low-cost, portable method will place a powerful instrument in the hands of those who need it most – parents.
Today, Maria and her team are preparing a pilot program with their government to equip primary healthcare providers with the software and support to examine children and diagnose Rb earlier. They are working diligently to share their invention worldwide.
Dr. Maria Manquez-Hatta tells attendees about “The Status of Retinoblastoma Care in Chile and South American and the Development of a Leukocoria Detection App”.
Is the Incidence of Retinoblastoma Increasing?
We also heard from Katherine Paton, M.D., a Clinical Professor for the Department of Ophthalmology & Visual Sciences at the University of British Columbia in Vancouver, Canada, and Chair of the Ocular and Orbital Tumor Group at BC Cancer.
Katherine addressed the pivotal question: Is the incidence of retinoblastoma increasing?
Recent research of annual case estimates has prompted more people to ponder this, sending anxiety throughout the Rb community. Katherine aimed to reassure and educate her listeners.
She first explained that understanding incidence guides research and planning to provide effective patient care. She detailed the fickle process of gathering reliable data, reminding everyone that “statistics aren’t really lying to you, but it depends on whether you know how they got there.”
In retinoblastoma, “Incidence” is the number of newly affected children per 1,000 live births. This is different from the number of children diagnosed. Katherine noted that many affected children in lower income countries are never diagnosed. The number of diagnosed children increases as awareness and medical capacity increase in these countries, while incidence remains stable.
Although Katherine could not confirm the answer, she referred to the WE C Hope website, which shows that rising numbers of diagnoses can be explained by rising numbers of children being born and surviving infancy. She finished by encouraging listeners to diligently watch data and trends so they can empower themselves to answer daunting questions like these.
Watch the session, Global Rb Panel.
Read Page 4/4 – Closing with Community Empowerment
The final sessions of Day Three at One Rb World 2024 were filled with hope and inspiration. From child life programming to transformative patient engaged research and care, the conference concluded at the heart of our community. Join us for the final part of this extraordinary journey as we celebrate the power of unity and collaboration.
Read Page 4/4: One Rb World 2024 Says “Mahalo” to the Retinoblastoma Community – Day Three | Page 4
Spark Hope: Help Shine the ArcLight to Save a Child’s Life
Early diagnosis is the best cure!
Our speakers highlighted 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!
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 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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