One Rb World 2024 Shines the Light on Life-Saving Care: Highlights from Hawaii Day Two
Page 1 of 2
Monday November 25, 2024
The 7th One Retinoblastoma World conference took place in Honolulu, Hawaii over three days in October 2024. Day Two brought perspectives from around the globe as our scientific programming took center stage. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, shares highlights from discussions on life-saving care and technological advances in the second installment of this three-part conference review.
Read Part 1 of 3 – recapping the pre-conference social day, and One Rb World Day One: Hawaii Says “ALOHA” to the 7th One Rb World Conference and Our Global Retinoblastoma Community
Our Day Two Recap is a 2-page article.
Rb survivor Natalie Deshler, and her sister, Nicole, strike a pose at our Hawaiian photo booth!
Excitement and friendship greeted us on Wednesday, October 16, 2024, at the Sheraton Princess Kaiulani in sunny Honolulu, Hawaii. Our guests reminisced about Monday’s bus tour and the jam-packed survivor and family focused conference sessions from the previous day, while our virtual attendees logged on for the second day armed with questions and ready to learn. Young ones couldn’t wait to return to the child life program and Morgan Livingstone’s wonderful play-based therapeutic activities.
Scientific Program Committee members, Jesse Berry, Marissa Gonzalez, Sandra Staffieri, and Maura Di Nicola applaud the One Rb World community at the start of Day Two.
Rb in Africa: the Present and Future of Care
Didi Fabian, M.D., ocular oncologist and Director of Sheba Global Ophthalmology at Sheba Medical Center in Israel, gave a video recap of the 2023 International Society of Ocular Oncology (ISOO) Africa conference, the first retinoblastoma-focused conference on the continent of Africa. Didi explained that “ISOO’s mission is to promote the advancement of ocular oncology by encouraging research, fostering international collaboration, and most importantly, prioritizing education. The majority of ISOO’s members are from North America, Europe, and a few from Asia, with very few members coming from Africa.
“If we combine all the members from high-income countries, they make up 83% of our total membership. Interestingly, the global distribution of Rb cases is the mirror opposite with only 15% of these cases occurring in high-income countries. The distinctions are evident in numbers, how they’re presented, treatment capacities, and their outlook for recovery. This inspired us to act and shift focus onto Africa.”
Lorna Renner, M.B.Ch.B., M.P.H., Head of Paediatric Oncology at Korle Bu Teaching Hospital in Accra, Ghana, shared that in 2017 she and ophthalmology colleague Vera Essuman, M.D., attended the One Rb World conference in Washington D.C. They were inspired to begin developing a national strategy for retinoblastoma care, and formed valuable partnerships with doctors who could help them establish guidelines for Rb care across Ghana.
Seven years later, Lorna explained major achievements, including:
- The retinoblastoma national care team and national steering committee.
- Development of a national strategy.
- Introduction of new treatments and services.
- Engagement with local and international stakeholders, from patient families and media to medical care colleagues and development partners.
Lorna Renner speaks alongside her fellow panelists, Andrew Stacey and Helen Dimaras, during the Rb in Africa Panel.
Ermias Kibreab, Ph.D. shared the experience of a parent going through an Rb diagnosis, treatment and survivorship in Ethiopia. He described accessing medical care in Kenya with the help of Daisy’s Eye Cancer Fund (now WE C Hope), advocating for Rb care in Ethiopia, and helping his blind son thrive academically in a poorly-resourced school system.
Three ophthalmologists offered a glimpse into the current situation, as well as the challenges facing families and medical professionals treating retinoblastoma in East and West Africa.
Anne Ampaire Musika, M.Med., oculoplastic surgeon and ocular oncologist at Makerere University, Kampala, discussed the state of Rb in Uganda. She shared early plans to develop a comprehensive Rb program at her university’s teaching hospital.
Ifeoma Chigozie-Echieh, M.B.B.S., consultant ophthalmologist at the Calabar Teaching Hospital, and Ifeoma Ezegwui, M.D., professor of ophthalmology at the University of Nigeria jointly discussed Rb diagnosis, treatment, and survival in Africa’s most populous country.
They also reflected on their experience of ISOO Africa and shared their gratitude for WE C Hope’s donation of 50 Arclight ophthalmoscopes to boost primary eye care access for children and life-saving early diagnosis.
Anne Musika’s team in Uganda and Lorna Renner’s team in Ghana also each received 50 of the high-tech solar-powered devices from WE C Hope this year.
Andrew Stacey, M.D., Associate Professor and Division Director of Ocular Oncology at the University of Washington, recapped findings from two very important collaborative studies. The Global Retinoblastoma Presentation Study (2017) and Outcomes Study (2020) included 4,351 patients from more than 200 Rb treatment centers in 153 countries – more than 50% of all children with Rb. Both studies clearly showed the global disparity in Rb care.
Children in Low Income Countries (LICs) are diagnosed at a more advanced stage – 50% have cancer outside their eye at diagnosis, compared with 1% in High Income Countries (HICs). All centers had life-saving therapy, and 98% had at least basic eye-salvage therapy, but most families in LICs struggle to access life-saving treatment due to delayed diagnosis. This is the biggest cause of preventable death worldwide.
Finally, Helen Dimaras, Ph.D., scientist and Director of Global Eye Health Research at the Hospital for Sick Children in Toronto, Canada, talked about how social variables affect retinoblastoma outcomes. She explained that the World Health Organization (WHO) describes five areas encompassing Social Determinants of Health (SDHs):
- Economic stability – can you pay for healthcare or travel/ accommodations near treatment?
- Education access and quality – can you advocate for your own health?
- Healthcare access and quality – what’s the state of the healthcare facilities where you live? Can you access those resources?
- Social and community – Does your social network support you through diagnosis and treatment? Can you connect with others who understand your diagnosis and share peer support?
- Neighborhood and built environment – how does where you live and your outlook on life impact the medical experience?
Helen highlighted that inequities emerge when there are systematic differences in health status between populations. They are socially produced due to unfair and avoidable factors – which means we can create solutions to help improve outcomes.
Watch the Session, Rb In Africa.
Rb in the Pacific Rim: Cure More, Care For All!
David Young, M.D., a pediatric ophthalmologist at the Pediatric Ophthalmology Associates of Hawaii in Honolulu, described his experience working in Hawaii. He only sees one case of Rb every one to two years, and has difficulties getting patients identified at primary care, referred for evaluation, and referred on to specialist care on the mainland after they have been diagnosed.
Children and their families must travel all the way to Los Angeles for thorough evaluation and eye salvage treatment. David concluded by emphasizing that Hawaii relies on the mainland and other countries because of its size and geographic isolation, making communication and collaboration in the Rb community essential.
David Young addresses the audience during the Rb in the Pacific Rim Panel.
Rb mom and Hawaii native, Kirstin Ramos, whose 2 year old son Lucas was diagnosed by David Young, expanded on the hurdles of traveling to the mainland for her son’s treatment as there is no option for therapy in Hawaii.
Having to book plane tickets, trying to secure a room at the Ronald McDonald House or an inexpensive hotel, renting a car, taking time off work, and fronting these costs are among the myriad of added complications to Lucas’s treatments. Kirstin is a KnowTheGlow USA Ambassador, and currently writing a handbook for parents whose children are diagnosed in Hawaii.
As the clinical nurse consultant for solid tumors at the Royal Children’s Hospital, Melbourne, Australia, and nursing chair for the International Society of Pediatric Oncology (SIOP) Oceania, Jayne Harrison shared an engaging presentation on Rb in Papua New Guinea. In Oceania’s smallest countries, treatment can be difficult to obtain, and families are physically and financially uprooted in the process of seeking their child’s care and cure.
A site visit in 2018 to Dili, the capital of Timor-Leste brought nursing and medical training workshops modified for local resources and staff needs. This inspired the establishment of the multidisciplinary Oceania Advisory Board within SIOP. Fourteen Pacific countries now collaborate, and two working groups focus on nursing and medical care.
Through ongoing collaborations, the Melbourne team was invited to visit Port Moresby General Hospital (PMGH) in Papua New Guinea (PNG). In 2023, they toured the new 12-bed pediatric oncology unit where three children with advanced Rb were being treated, and joined ward rounds. They delivered training on various aspects of Rb care, including early warning signs, safe chemotherapy treatment, palliative care, and family support.
The PNG and Melbourne team identified many challenges to care, including early detection, education, training, access to treatment, transportation, financial constraints, language barriers, and access to quality care. All of this led PNG to establish the Papua New Guinea Oncology Nursing Association, with regular tumor-specific Zoom tutorials and group chats held to learn, ask questions, and stay up to date and supported.
In the past year, through the partnership, PNG has introduced a childhood cancer registry, treatments tailored to local resources and for rarer cancers; and the WHO Lived Experience Study to assess the impact of cancer on patients, survivors, and families.
As Jayne said, “building the village in PNG has begun”.
Jayne Harrison, Clinical Nurse Consultant from the Royal Children’s Hospital, Melbourne, reflects on the impact of the One Retinoblastoma World conference and how it fosters hope in the Rb community.
Sandra Staffieri, Ph.D., is a retinoblastoma care co-coordinator/senior clinical orthoptist for the Royal Children’s Hospital, Melbourne, and scientific program co-chair for One Rb World 2024. She described the retinoblastoma experience in Australia and New Zealand (ANZ), and their collaborative approach to care while considering the wider context of Rb in Oceania.
From 2014-2023, 226 children were newly diagnosed with Rb in the two countries, with an average of 23 diagnoses per year, most with no family history. Early presentation is mostly a result of seeing leukocoria or strabismus, or found because of a family history.
The major challenge is a very small population spread across a vast geography, which dilutes the expertise of Rb care. So in 2017, six retinoblastoma programs united to form the Retinoblastoma Australia New Zealand Alliance (RbANZA), and support one another to improve service delivery. The team includes oncologists, ophthalmologists, radiologists, and hopes to include pathologists, child life therapists, and more in the near future.
RbANZA has set standards for post-enucleation pathology reporting to support patient care, introduced a monthly tumor board to review patient care, and successfully added a new Rb Care Coordinator role in Queensland and New South Wales. Advocacy for child life provision at all points of patient care continues.
Sandra briefly described the complexities of Rb care across Oceania’s small island nations, and the problems facing families and medical teams when children from these countries arrive at an ANZ center hoping for treatment. She described the “cure more, care for all” mindset where awareness programs, referral pathways, improving local community education, and in-country treatment can all help improve survival of both the child and their entire family.
Watch the Session, Rb In the Pacific Rim.
Can We Cure Rb Worldwide? A Global Conversation
We had the pleasure of welcoming the President of the International Society of Paediatric Oncology (SIOP), Guillermo Chantada, M.D. for our keynote address. He epitomizes global collaboration as Head of the Outreach Program at the Hospital Sant Joan de Deu’s Pediatric Cancer Center in Barcelona and Scientific and Academic Director at the Fundación de Perez Scremini in Montevideo, Uruguay.
Guillermo presented the challenges in low socio-economic areas, including no centralized treatment guidelines and abandonment of treatment. Causes for death related to Rb mostly occur from:
- High-Income Countries: second primary cancers.
- Middle-Income Countries: extraocular relapse.
- Low-Income Countries: abandonment of treatment.
He identified the top two barriers to curing retinoblastoma worldwide:
- Advanced disease at presentation.
- Poor ability to begin or complete treatment.
Screening remains a vital key to early diagnosis.
Guillermo introduced the World Health Organization’s 2030 Global Initiative for Childhood Cancer, with the goal to achieve at least 60% survival for all children with cancer, and reduce suffering around the world by 2030. The initiative focuses on six “index cancers”, including retinoblastoma, that represent most children with cancer worldwide, and allow the WHO to monitor progress. This means Rb has become a barometer of global effort to save the lives of all children with cancer.
To further discuss this topic, we welcomed Luke Thomas, CEO of World Child Cancer; Jesse L. Berry, M.D., Director of Ocular Oncology and the Retinoblastoma Program at Children’s Hospital Los Angeles (CHLA), and Vice President of the International Society of Ocular Oncology; Michael Sullivan, M.D., pediatric oncologist at the Royal Children’s Hospital, Melbourne, Australia and Co-Director at St. Jude Global’s Adapted Resource and Implementation Application (ARIA) Guide. The session was moderated by Pamela Paul, Opinion columnist for The New York Times.
Global Conversation panelists Pamela Paul, Jesse L. Berry, Michael Sullivan, Luke Thomas, and Guillermo Chantada pose together after their conversation.
Michael recounted the WHO criteria for selecting the six index cancers in 2019:
“We were aware of a number of things. Firstly that the global burden of childhood cancer is around 475,000 children per year (in 2019). We know that less than 50% of those ever see a pediatric oncologist. Most of those children live in countries where there are very few pediatric oncologists; they are managed by general pediatricians or family physicians.
“The other point in selecting the index cancers is they’re curable, and knowledge about treatments can overlap. If you have the skills to treat a Wilms tumor, as a bystander effect, you’ll develop the skills to treat other abdominal tumors.”
Pamela asked each panelist to talk about how their respective organizations contribute to the success of the WHO 2030 initiative.
Jesse began by highlighting One Retinoblastoma World’s ability to destigmatize enucleation and blindness as a key to saving life first:
“The focus has moved from saving a child’s life to saving their eye and vision. I’m an eye surgeon and I love to see the retina and I love saving a child’s eye. I heard not that long ago ‘Well you can take an eye out of a kid, but you can’t put it back in.’ Well what you really can’t do is take a kid out of a coffin. We have to prioritize life – there’s such a rush to get on planes and go here and there and forget that this is a child with cancer, and we have to save their life.”
Luke Thomas said:
“One of the things we are doing at World Child Cancer is something Guillermo talked about in his presentation – addressing the challenge of treatment abandonment. One of the things we focus on is funding psychosocial support which provides care and support as well as financial and emotional support, not just for the children but for the parents and for the healthcare staff as well.
“It’s one of the biggest things we do which actually helps to overcome treatment abandonment, because for a lot of the families I meet when I go to the countries World Child Cancer supports, the cost of getting and staying in treatment is significant.”
Michael Sullivan posed the question: should we adopt treatments developed in high income countries and use them in LMIC’s, or should we modify treatments to use lower resources and meet local needs. That’s an ethical dilemma.
Parents want something safe, trusted, and based on the best evidence, adapted to their context. Because if you use a very intense protocol out of context, treatment related death goes up.
This stirring and thought-provoking panel could have lasted for hours, with many interactive questions from the audience.
Watch Guillermo Chantada’s keynote address and the full Global Conversation.
Read on for More from Day Two
Day Two of the 7th One Rb World Conference gave us powerful insights into the present and future of retinoblastoma care around the world. From groundbreaking use of precision medicine, and the growth of AI in patient care, to the tech breakthroughs supporting early detection, and hope-filled play and talking story in the child life program. There’s much more to explore that made this day unforgettable.
Read the second half of our day two review to find out more.
Guillermo Chantada, President of the International Society of Paediatric Oncology, shares his experience of the Global Conversation panel discussion, “Can We Cure Retinoblastoma Worldwide?”, and the vital role of the One Rb World forum in achieving this goal.
Luke Thomas, CEO of World Child Cancer, reflects on his valuable learning experience at the One Rb World conference, his participation in the Global Conversation panel discussion, and the importance of collaboration to improve care and cure worldwide.
WE C Hope USA secretary and Rb survivor Clay, and her grandson Maddox.
WE C Hope Child Life Specialist, Morgan Livingstone, and Director of communications, Kristen Small, with medical play doll Kamau.
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.
Also From Our Blog:
Living With Vision Loss: Challenges and Changing Perspectives
A Milestone Anniversary: Celebrating 30 Years Being Cancer Free
You May Also Like…
Perfect Vision: Care and Cure for Children with Eye Cancer in Developing Countries
Retinoblastoma is highly curable with early diagnosis and modern therapies. But 90% of affected children live in developing countries, and globally, less than 3 in 10 children survive. Rb survivor and volunteer CEO, Abby White, explores the biggest challenges to care in developing countries, and some ways to overcome them.
International Care: Challenges and Opportunities
Families and medical professionals worldwide seek retinoblastoma care at centres offering treatments that are unavailable in their home country. Many families contact WE C Hope for assistance before, during or after such treatment. Abby White explores the challenges they experience and what can be done to help improve outcomes for their children.
United Against Retinoblastoma: The Importance of Global Data and Collaboration
Understanding how retinoblastoma affects children is critical to improve diagnosis, treatment, support and outcomes for all. Mattan Arazi, M.D and Ido Didi Fabian, M.D., MPH, world-focused ophthalmologists from Sheba Medical Centre, Israel, explore why global data and collaboration are so important in Rb research, and the knowledge, progress, and hope they are building for families and professional teams worldwide.
Between Shadow and Light: Young Lives in Jeopardy from Retinoblastoma
Worldwide, children and their families grapple with life-threatening eye cancer due to delayed diagnosis and care. Unchecked, retinoblastoma has far-reaching consequences. Through two family stories, WE C Hope CEO Abby White explores the impacts of low awareness, slow referral, and delayed care, and the life-saving, sight-saving opportunities they reveal.
Early Diagnosis is the Bedrock of Retinoblastoma Care
Despite advances in retinoblastoma treatment, effective care is challenged globally by delayed diagnosis. Early diagnosis saves lives and improves sight-saving options. Rb survivor and WE C Hope CEO, Abby White, explores common reasons for delayed diagnosis, four pillars needed to achieve routine early diagnosis, and how our One Rb World community is united in this goal.
Leave a Reply
Want to join the discussion?Feel free to contribute!