Perfect Vision: Care and Cure for Children with Eye Cancer in Developing Countries


Tuesday February 4, 2020


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.


A smiling African child - the pupil in one eye glows white while the other appears normal.

“Leukocoria” – this white-pupil glow is the most common early sign of retinoblastoma.


Meet Emma and Hannah, two children with unilateral retinoblastoma.

In North America, Kate frequently notices a strange white-eye glow in her daughter’s photographs. Concerned, she turns to Google and discovers this could be a sign of cancer. She asks her family doctor for an eye exam, and when an ophthalmologist sees Emma, retinoblastoma is confirmed.

Removing the eye is necessary to save Emma’s life and minimize trauma, and her family is counselled to help them understand and accept the surgery, which takes place several days after diagnosis.  One week later, pathology results confirm the cancer has not spread and Emma needs no further treatment.  Within a month, genetic testing results indicate the cancer was caused by sporadic RB1 mutation, eliminating risk to blood relatives, and reducing risk to the other eye. A beautiful prosthetic eye is made for Emma, who continues to thrive through her cancer experience with loving support.

In Africa, Rachel frequently notices a strange white glow in her daughter’s eye, most obvious at dawn and dusk, and in the dim light of her rural home. She is curious, but distracted by many challenges of providing for her family in extreme poverty.  She consults the local traditional healer, who gives her an herbal ointment to be applied on Hannah’s eye twice daily. It doesn’t help, and when the eye starts to bulge forward, Rachel goes to the city hospital. She walks nearly an entire day to get there, carrying Hannah on her back.

Doctors tell Rachel cancer is growing in Hannah’s eye and it must come out. When the eye is removed, mother and child return to their village, thinking the worst is behind them. A year later, the socket grows red and swollen. Back at the city hospital, a doctor tells Rachel her daughter’s cancer has recurred. When he finally tracks down Hannah’s pathology report from the enucleation a year before, it says only “retinoblastoma”. Treatment options are limited, and Hannah eventually dies from systemic spread of the cancer.

Two precious children with drastically different outcomes from the same diagnosis. Their stories are common reality for children with retinoblastoma in their respective parts of the world.  The difference becomes even more prominent when we consider that survival approaches 100% in developed countries, where only 10% of the world’s children with retinoblastoma live.  While 90% of affected children live in less-economically developed countries. Global survival is less than 30%.

Retinoblastoma is frequently not detected early enough for effective medical care.  Families experience a maze of inadequate or inappropriate diagnostic and treatment services, lack of support and rocketing financial demands. Overwhelmed parents and guardians are forced to abandon treatment or child, and thousands of children face a slow, agonising, isolated death.

Many countries already have the resources and skills to cure children, even save vision when both eyes are affected, if diagnosis comes early enough.  Yet survival, even at major hospitals, is dismal.

The burdens this cancer places on families and health systems are almost overwhelming. But a handful of organizations are working hard to build sustainable local capacity in retinoblastoma care to save more children and improve quality of life for their families.

Below, we explore the biggest challenges to care in developing countries, broad opportunities to overcome them, and the resources needed to transform those opportunities into reality.

A young girl and her father share a smile

Awareness

Challenges

Worldwide, parents are the first to see a squint or a strange white glow in the child’s eye in dim light, long before visiting a health worker.  However, a poverty-stricken family does not consider this painless sign justifies expensive medical investigation when the child appears well. Yet, if they knew their child’s life was possibly in grave danger, almost all parents say they would try to find the money to see a doctor.

Many countries have no nationally established system of regular child health checks, and swift access to doctors informed about retinoblastoma is extremely limited.  While the USA has 25 doctors per 10,000 people, nearly 50% of developing countries have fewer than five doctors per 10,000 people.  Most primary health care workers are unaware of childhood cancer, and do not appreciate that a white pupil in a child’s eye calls for urgent specialist referral.

So many children already have advanced disease at diagnosis, which potentially has already spread outside the eye. No data is currently available to show or estimate how many children globally present with disease already extended outside the eye.

Opportunities

Education on the importance of leukocoria and strabismus can dramatically improve early diagnosis and a child’s chance of cure. Concern is often raised about overwhelming fragile medical systems with an increase in non-retinoblastoma strabismus and leukocoria referrals that may arise.  But this should not become a barrier to educating about life-threatening cancer, especially as such referrals can lead to diagnosis and treatment of other vision-threatening conditions.

Health Workers: Retinoblastoma education is vital for traditional healers, rural health workers, Maternal and Child Health professionals and doctors at all levels, across public and private sectors, including opticians.  Knowledge and information can be shared through existing Continuing Medical Education programs, publications, workshops and seminars.

Posters and Leaflets: Posters can be displayed in ophthalmic, paediatric, maternal and child health clinics.  They may be more effective in conjunction with take-away awareness materials in waiting areas for families, and in staff areas for physicians and nurses – helping also to spread knowledge to the wider community.

Adapting Materials: Excellent awareness materials are produced by organizations around the world, with key information for families and medical professionals.  Adaptation is vital to ensure local relevance and affinity.  For example, several posters describe good practice in ophthalmoscope examination of eyes for normal red reflex, with photos of a doctor demonstrating the technique, but many primary health centres have no ophthalmoscope and are operated by a single nurse.

Child Health Book: At least 163 countries produce home-based health records. Guiding and recording health care interactions during the first years of life, the book is usually handed out during pregnancy, at birth or at first vaccination. This is an ideal vehicle for systematic health education.  Including text and photographic information about retinoblastoma can provide a clearly understood message in a format that is accessible to all.

Focused Annual Campaigns: Raising awareness in conjunction with established international campaigns can be very valuable, especially when engaging the media. International Childhood Cancer Day (15 February), World Retinoblastoma Awareness Week (starts second Sunday in May), and Childhood Cancer Month (September) all offer great opportunities.  National health campaigns encouraging parents to bring children under five years to routine health checks or vaccination often attract significant media support, and potential for combined awareness raising.

Media Stories: Human interest stories and personal knowledge of little-known medical conditions like retinoblastoma appeal to the media.  Medical professionals, parents and survivors have unique and powerful stories to tell, and sharing them can become a powerful life-saving force and building block of hope.

Awareness and Education: Campaigns targeting community and health worker education, stigma prevention and media mobilisation are also opportunities to rally support.  Community members and medical professionals who care about children with retinoblastoma will be more likely to help mobilize resources for the cause when they understand about the cancer, and feel emotionally connected to its impacts.

These three videos show how a single creative idea can be adapted for different communities.  Video #1 was created by TUCCA (Brazil), and later translated into multiple languages (here Arabic) by the International Network of Cancer Treatment and Research.  We Are TLM (Ireland/Tanzania) adapted the original content to create a PSA for use in sub-Saharan Africa – the PSA is available in both English and Swahili.


Referral and Diagnosis

Challenges

In the absence of affordable, accessible medical advice, many impoverished families first seek assistance from traditional healers. Children may also be first seen at rural health centres, where over-worked, under-trained staff frequently misdiagnose retinoblastoma as a more common ailment, like infection or cataract.

Some children receive therapy for an incorrect diagnosis, causing families to spend precious funds on inappropriate medication.  Referral to eye doctors may then be further delayed while families gather more money to pay for travel and the medical bill.

Most countries have no protocol to guide physicians who become suspicious that a child has retinoblastoma.  Children who could be treated closer to home with simple surgery to remove the cancer-filled eye, are often referred far away for expensive diagnostic scans or care.  Many more children experience delays as they are sent from one centre to the next until they reach a hospital equipped to treat them.

Referral to a major hospital may not mean referral to an ophthalmologist.  The child may first be seen be a general physician or paediatrician – if that doctor is not familiar with retinoblastoma, significant barriers to diagnosis continue.

Impoverished parents commonly hesitate to ask their doctors questions. When they are told nothing is seriously wrong, they rarely seek a second opinion.  This may be due to trust of the doctor’s word, a feeling of intimidation, or inability to pay for another medical consultation – even if they have doubts and concern for their child’s welfare.  Conversely, when told their child has eye cancer, many parents seek multiple opinions from different hospitals, especially if surgery to remove the eye is advised. This also significantly delays lifesaving care.

Examination under anaesthesia (EUA) is required to carefully assess the eye with symptoms, and the other eye – even if it appears normal on awake exam.  At the first EUA, a dangerous eye can be removed in a step towards cure.  However, many children experience these steps over two or even three EUAs, wasting precious time and resources, and causing unnecessary distress.

Ophthalmologists often don’t see children until their cancer is so advanced that the eye protrudes forward, or ruptures. Advanced orbital Burkitt’s lymphoma is much more common than retinoblastoma in malarial regions of Africa and causes a similar appearance.  So many doctors rely on pathology results for diagnosis, which further delays the start of treatment for whichever cancer the child has.

With a goal of establishing a diagnosis without removing the child’s eye, some doctors may consider a needle biopsy of the tumour.  But this poses extremely high risk for spread of the cancer and is strongly discouraged.

Lumbar puncture and bone marrow aspirate, required in cases of advanced retinoblastoma, are not routinely done during EUA.  These procedures can be very traumatic for the conscious child, in the absence of specialist psychological supports.

Over-stretched medical personnel have little time or depth of retinoblastoma-specific knowledge to adequately counsel families during the referral process and at diagnosis. Complete history is often difficult to obtain when parents fear they will be blamed for delaying medical care.  Genetic counselling is rarely offered, and surveillance of siblings and children of adult survivors for small retinoblastoma tumours is limited or non-existent for most families.

Staging the child and each eye is vital to develop an individual evidence-based care plan, and supports research that can shape relevant medical care. Lack of clear staging in many countries undermines life-saving care and progress.  It also prevents parents from making fully informed decisions about their child’s care.

Opportunities

Identify Rb Centres: An important first step for each country is knowing which health care centres can treat simple unilateral disease with enucleation, and those with capacity to treat more complex disease.  This will aid appropriate referral when health workers – and parents themselves – suspect retinoblastoma.

Visit the One Retinoblastoma World Map – a global registry of retinoblastoma treatment facilities, with details of their resources, patient numbers and capacity.  A free tool that parents and professionals can use to guide effective referral.

Retinoblastoma Guidelines: Complete management guidelines for all stages of retinoblastoma care will include a referral and diagnosis protocol.  A simple “it this then that” guideline can create a clear route for each individual child to appropriate care. Such guidelines will avoid or cut unnecessary delays and costs, and reduce the number of traumatic, costly anaesthetics they experience. Read the Canadian Retinoblastoma Care Guidelines, which were adapted over five years for use in Kenya, and adopted for implementation by the Kenyan Ministry of Health.

Arrow diagram showing referral process for children with simple and complex retinoblastoma

Summary of a simple referral guideline developed by the Kenya National Retinoblastoma Strategy Group. Children with uncomplicated unilateral retinoblastoma can managed with enucleation by a competent ophthalmologist clost to home, followed by detailed pathology. Children with complex retinoblastoma should be referred directly to a specific hospital identified as having capacity to provide care.  Communication between the team at that hospital and local doctors can support the child’s care during and beyond treatment.


Treatment and Follow Up Care

The most important treatment for retinoblastoma, removal of the eye(s) containing life-threatening cancer, is widely available around the world. After surgery, children require a combination of the following:

  • accurate, timely pathology on the removed eye,
  • follow-up care to monitor the healthy eye and assess for recurrence,
  • treatment in case of threat, or reality, of cancer spread beyond the eye,
  • vision-saving therapies to treat retinoblastoma and avoid loss of the second eye.

These services are very hard for most families to access.

Challenges

Surgery

Eye removal is a simple surgery that is well done by most ophthalmologists. However, over-worked doctors have little time to talk extensively with family members, to counsel them on vital need for this radical treatment, its implications and recovery.  Parents have scant opportunity to ask questions that enable understanding or encouragement about the child’s future.  Stigma and fear cause many families to delay or refuse surgery at a time when the child may be curable by surgery alone.

In many countries, orbital implants to replace the volume of the eye are not routinely inserted at the time of eye removal. This is due to cost or poor supply, and belief that their use will mask orbital recurrence of retinoblastoma.

Extensive retinoblastoma is common in developing countries.  With the best intention to help, difficult major surgery may be attempted, removing the eye and tissues around the eye (orbital exenteration).  Such surgery is unlikely to achieve long term cure, and causes disfigurement and complications that further burden the family and health care system.  Chemotherapy offers better palliation and some small prospect of cure.

Pathology

Accurate pathological examination of removed eyes is required to define risk that retinoblastoma has spread outside the eye, and guide post-operative care. Removed eyes are frequently sent to the local general pathology lab, rather than to a specialist ophthalmic pathologist. Often, an entire hospital is served by just one pathologist who has no opportunity to study retinoblastoma pathology.  This commonly results in reports confirming only the diagnosis, with no information that can help guide care.

Turn-around-times for pathology reports are frequently longer than one month, which delays appropriate care.  The cost is also prohibitive for many families, further hindering a rapid turn-around.

In the absence of a swift, detailed report to identify high risk of orbital recurrence, children may be treated with chemotherapy following surgery, with the intention to treat potential residual cancer before it causes illness. Doctors must weigh the financial and psychological impacts of over-treating a child cured by surgery alone, against the life-threatening risk of under-treating cancer that may already have spread.

Post-Operative Therapy

Chemotherapy drugs that are standard retinoblastoma therapy worldwide are expensive and frequently difficult to obtain in resource-limited countries.  Children often receive modified chemotherapy treatment using available drugs, even if they have no documented impact on retinoblastoma.  For example, children in East Africa often receive chemotherapy developed for equatorial Burkitt’s lymphoma, a protocol given every 2 or 4 weeks for up to several years.  Doses are sometimes reduced in young children to minimise side effects.

Due to the costs and risks of infection, children do not commonly have a central venous catheter inserted to aid frequent intravenous access.  They experience repeated traumatic puncture of peripheral veins to administer chemotherapy, medications and blood product transfusions, and to obtain blood for routine tests.

Radiotherapy is only available in major centres, where it may be used for the treatment of children with extensive orbital retinoblastoma or invasion of the brain.  Due to their young age, children are usually anaesthetised for each treatment.  Costs of treatment, travel and housing put this option beyond the reach of most families.

Vision Salvage Therapy

Smaller tumours within the eye can be cured by combinations of chemotherapy, laser and cryotherapy.  Although these technologies are available in reginal centres around the world, they require an intense coordinated multidisciplinary team effort and family support that is difficult to accomplish in the resource limited environment. Laser and cryotherapy alone need examinations and treatment every 3 to 6 weeks over at least several years. If the opportunity for such meticulous care does not exist, tumours will grow, destroy vision and ultimately require removal of the eye to save the child’s life.

Follow-Up

Families who live a great distance from the treating hospital may not have funds to return for post-operative follow-up.  In addition, poor sanitation and lack of access to safe water, experienced by more than 30% of the world’s population, dramatically undermines the survival of immune-compromised children receiving chemotherapy.

As a result, children often remain in hospital for months, to monitor recovery, manage their care between treatments, and ensure attendance at follow-up assessments.

Following surgery to remove an eye, many children do not receive prosthetic eyes or facial prosthetics. Local expertise in making prosthetics is often minimal, and the cost of private sector service is prohibitive.  Affordable artificial eyes are rarely custom made, and children who do receive eyes may not have access to adjustments or replacements as they grow.

Without supportive information, many parents cannot understand the nature of retinoblastoma and the need for close monitoring beyond treatment.  Logistics and costs challenge the family’s ability to attend routine follow-up visits far from home, while limited information provided to primary and referring doctors inhibits their ability to provide local follow-up.

When follow-up is incomplete, it is impossible to know how many children are cured (defined as at least 5 years of disease-free survival).  Follow-up of retinoblastoma survivors into adulthood is virtually non-existent, and many survivors remain unaware of the risks they and their children may face throughout life.  As a result, examination of at risk children from birth to detect cancer before symptoms arise is extremely rare.

People sit at individual study tables in rows, listening to a speaker off camera, and taking notes.

Pathologists and pathology technicians from across Kenya and several neighbouring countries attend a training course on ophthalmic pathology, including retinoblastoma. Training organised by WE C Hope and our partners in Nairobi has included theory sessions and practical lab work.


Opportunities

Protocols and Guidelines: Team effort across disciplines and between hospitals can develop realistic treatment protocols, and agreed standards of care based on clear evidence. These tools guide patient care, increase opportunity for cure, relieve much suffering when the child cannot be cured, and raise quality of life for the whole family.  They also help target the work of partnerships building local capacity in retinoblastoma care, to areas that will have highest impact on patient care.

Pathology: Standard request and reporting forms for retinoblastoma will guide pathologists in the examination of enucleated eyes and the key information needed to plan effective therapy.  Training pathologists and pathology technicians in the accurate assessment of eyes for retinoblastoma will also aid the process, and can reduce final report turn-around-times.

Rehabilitation: Facilitating routine use of implants, shell conformers, and prosthetic eyes will reduce the stigma of eye removal surgery, support parent acceptance of enucleation, and promote children’s recovery.  Sustainable provision of affordable prosthetic eyes can be achieved by training technicians locally to fit and adjust mass-produced stock eyes.

Supplies: Co-ordinated effort between hospitals and agencies can help secure a reliable supply of retinoblastoma specific chemotherapy drugs, orbital implants, stock prosthetic eyes and other resources at an affordable cost.

Child Life: interventions that care for the child’s psychosocial needs can improve coping and co-operation during procedures, treatment and hospitalization, and reduce the costs of care.  Well-prepared and supported children require less sedation or pain medication, and fewer medical professionals are needed to complete procedures.  Healthy spirits heal faster, and children leave hospital sooner.

Family Support: Building structures that provide information, emotional and practical support will improve parent coping, understanding, acceptance of and compliance with treatment, rehabilitation and follow-up care.

A child plays with a bright meteor shower distraction toy while the nurse takes a blood sample.

A visually stimulating toy helps distract a Kenyan child during a routine blood draw.

A man holds a tray of prosthetic eyes while handing one to a young girl as her mother holds her close and looks on.

A Kenyan child and her mother learn about prosthetic eyes in preparation for her fitting and adjustment of a stock eye.

Family Support

1. Accessing Medical Care

Challenges

Transport and accommodation

In remote areas, reliable, affordable travel is frequently unavailable.  Referral may be delayed while the family secures funds for transport, or awaits a means of travel. During chemotherapy, immune compromised children often travel to and from hospital on dusty, overcrowded public transport, increasing their risk of infections.

There is frequently no communication between the peripheral and referral centre prior to admission at the referral centre.  Often, admission is not immediately possible, sometimes leading to an indefinite state of homelessness.  This may eventually lead the family to abandon the referral.

Many hospitals offer a bed and daily meals on the ward to parents of babies and toddlers.  However, families often cannot afford the extra costs, and accommodation is rarely offered for parents of older children.  When parents return home, the unaccompanied child is at greater risk of being abandoned.  Parents who stay in town may sleep on the streets in order to remain close to their hospitalised child, sometimes with their other children in tow – all exposed to serious risk of ill health and violence.

Medical Bills

The costs of hospitalisation, investigations, surgery, chemotherapy and other drugs mount up fast.  They exceed the means of most families, who also lack capacity to source financial support.  Sponsorship is rare and ad hoc. Delaying care while seeking funding allows the cancer to grow, requiring more intensive, costly therapy.

Medical bills accumulate when the child is hospitalised between treatments because the family cannot afford to travel for each admission.  In countries throughout Africa, Asia, Latin America and Eastern Europe, children who could be discharged are routinely held at the hospital until payment is received. The impossible bill increases daily, forcing some families to abandon their child.  A disastrous outcome for child, family and the institutions involved.

Opportunities

Practical Support

Clear, transparent guidelines, and assistance to access statutory funds, could secure some financial support for families in financial difficulty as a result of retinoblastoma.  Small grants to meet transport costs, and advocacy for appropriate transport could ensure treatment is not delayed, refused or abandoned for financial reasons.

Facilitating links between family members at the hospital and those remaining at home, can encourage follow-through with a difficult treatment path.  Especially so when there are other children in the family to be cared for.

Family Accommodation

An alternative to hospital admission that enables the family to remain together may reduce costs for families and institutions, and dramatically reduce the risk of children abandoning therapy. Parents can care for their children, close to appropriate childhood cancer care.

A purpose-built family house can also provide space for play, education, relaxation and spiritual healing, for practical support and rehabilitation services.  Small innovative adult learning and income generation opportunities on site could help parents develop skills and resources to support their children when returning home.

2. Information

Challenges

Parents often describe feeling threatened by the experience of rushed information, rather than supported by it.  Limited consultation time means they have no opportunity to ask questions at critical times about the diagnosis, treatment and prognosis. The sense of overwhelm is often compounded by a lack of information sources relevant to the local setting.  As a result, consent is rarely informed, and parents may refuse treatment based on a limited understanding of the situation.

Information for the children themselves, before, during and after procedures and treatment is rarely considered.  This means children are often frightened and unable to co-operate with their care, further escalating the financial and psychological costs.

Opportunities

Thorough explanations empower parents to be strong advocates and informed decision makers for their child. Explanations of what retinoblastoma is, what causes it (especially allaying fears of it being “my fault”), the diagnostic process, recommended medical care and its reasoning, and prognosis with and without prompt treatment. Information is most effective when provided in appropriate language for caregivers, extended family, the child patient and siblings.

Counselling parents and adult survivors about the genetic implications of this cancer empowers them to seek appropriate screening for their young children at risk. These children have the best opportunity for vision saving therapy as tumours can be found before they grow large enough to cause symptoms.

Repeated information will gradually become easier to understand, remember and explain to other family members.  Photographs of children before and after treatment may help parents to understand that prompt medical care can save the child’s life, and the child will still be beautiful after removal of an eye.

Information can be shared across the extended family, and ultimately the wider community. General public awareness about retinoblastoma, its treatment and consequences will grow.

Jayne and Martha sit with a circle of parents, deep in conversation.

Kenyan Child Life staff Jayne and Martha lead a parent support group session at the 2013 Kenya National Rb Strategy Meeting.


3. Psychosocial Care

Challenges

Busy doctors and nurses have limited time to address the needs of the whole person.  As a result, parents often feel their child is viewed as “a cancer to be cured” rather than “a child who needs care”.  Many parents fear mutilation of their child by eye removal surgery, and the stigma associated with an empty eye socket.  They have little opportunity to express these fears in a safe environment, to discuss them with the medical team or parents who have been through the same experience.

Lack of private consultation space increases the difficulty parents feel in asking questions, and poses concerns about confidentiality.  Language can often be a major barrier, both in relation to mother-tongue and unfamiliar medical terms.

Families arriving in the city from rural communities rarely receive orientation or support to adjust.  Parents often have no friends or contacts, no knowledge of the city’s geography or culture, and nowhere safe and welcoming to stay.  This reduces their ability to cope effectively with the experience of their child’s cancer, and increases risk that the child will abandon therapy, or be abandoned by their parent.

Parents often feel children are ‘forced’ through procedures, and uncooperative children are threatened into submission.  Fear increases, leading to even less cooperation at subsequent procedures, and increased risk of poor mental health.

Long hospitalisation, necessary for many impoverished children, deprives the child of a loving, family environment at a crucial stage in their personal development.  Few hospitals have existing spaces, material resources or facilitators to support playful activities that stimulate a child’s development and promote their wellbeing during medical care. Supervised hospital playrooms and education programs are rare, usually established and maintained through international partnerships or independent charities.

Where they are present in hospitals, social workers, psychiatrists and psychologists typically have extremely heavy caseloads. They rarely have time to invest in paediatric oncology support as the many critical patients take priority, usually in adult care.

Opportunities

Medical Professionals: When medical personnel providing retinoblastoma care understand and respect the needs of affected families, parents and children cope better and feel more engaged in the experience.  Listening with empathy and patience, and helping the family understand the medical situation and required procedures, empowers caregivers to be positive advocates for the child.  Private consultations protect confidentiality and give the family freedom to discuss their child’s care openly.

Family Group

Families need opportunities to communicate with others who have been through a similar experience.  The contact encourages families awaiting enucleation surgery, while emphasising that retinoblastoma can be cured, and that a good quality of life is possible beyond treatment.

Family to family support can be initiated through a register of families willing to share their experiences.  Regular group meetings can provide emotional support and education for parents at the hospital.   Social media platforms such as Facebook or WhatsApp can link smartphone-owning families outside hospital.

Child Life

All members of the medical team need to remember that cancer experience slows child development and reduces the child’s ability to cope with challenging situations. Supporting a child’s coping has a positive impact on their ability to engage in their care, response to treatment, resistance to infection, and overall physical and mental health.

Staff training in child friendly approaches can facilitate effective support of the child and other family members.  Training can encompass infant massage, non-pharmacological pain management, child friendly language, medical play for procedure preparation and distraction, positions for comfort and family education.  Training individuals to become child life leaders, trainers and advocates within the local medical community can extend the benefits to children beyond retinoblastoma and childhood cancer care.

Transforming Opportunities into Reality

Material and human resources to address the needs of children and families with retinoblastoma are not available in most countries. The core components of care (removal of eyes with retinoblastoma and pathological examination to support rational treatment plans) may be available. But lack of data, focus, coordination and collaboration within the over-stretched medical community severely impacts survival of affected children.

Valid data can clearly demonstrate a country’s retinoblastoma burden and is necessary to rally resources to improve care.  Important data include the most accurate numbers of diagnosed children, hospital admissions, costs of medical care, financial impact of delayed diagnosis/treatment, social impact of retinoblastoma and implications for quality of life. Such research can be achieved through collaboration with institutions such as national research institutes, universities, and hospitals.

While many solutions to the challenges of awareness, medical care and family support seem simple, major support is needed to make them happen.  Sustainable programs require effective local and international human commitment, skills, seed funding and ongoing income generation.

Partnerships include all local stakeholders who care about retinoblastoma, including medical professionals, social workers, parents and survivors, and Ministry of Health personnel.  Most partnerships developing retinoblastoma care today include an international partner – usually a retinoblastoma care team from a hospital in a developed country, linked with a childhood cancer or eye care charity.

Community, media, corporate and grant funding support, both locally and internationally, is vital to develop lifesaving care.  Collaborations large and small turn opportunity into reality for families affected by retinoblastoma – and ultimately other types of childhood cancer too.

A diagram in WE C Hope branded colours shows an equilateral triangle pointing upwards. Along the left side is the word “awareness”. Along the right side are the words “medical care”. Along the bottom line are the words “Family Support”. Overlaying the triangle, at the top is a gold ribbon with a red love heart in the ribbon’s loop. Below, in the centre of the triangle is a circle with a title and 5 lines creating an acrostic that forms the phrase “THE CHILD FIRST”. Text reads: The Child; Family centred care; International community; Research for evidence; Survivorship care; Throughout life”.

The Retinoblastoma Triangle

Awareness, medical care and family support are all vital ingredients to achieve effective cure of retinoblastoma. If any one of these elements is absent, the chance of cure radically decreases.

Some casual observers question the wisdom of investing in care for children with eye cancer, when challenges are great and so many die.  Yet the child’s life is no less valuable than that of a child with malaria or HIV, their suffering is no more acceptable, and the opportunities to care for them are just as real.

The challenges, and opportunities and needs identified above illustrate how the future can be recast for children and families in resource limited areas of the world.

Some solutions are monumental in their simplicity and can be quickly achieved when people work together.  Others are large projects commanding great human and financial commitment, patience, determination and teamwork over many years, and significant partnerships to sustain them long-term.

All interlink to create a sturdy response to retinoblastoma that supports the medical team and cares for the individual child and family.  Creating hope from the darkness of childhood eye cancer, and a vision that effective care and cure is possible for all children in the world.

About the Author

Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.

Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries.  After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.

Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.

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