A vigilant grandmother noticed a white cat’s eye in her 15-day-old granddaughter Sampada and brought her to Delhi from Nepal for treatment.
Sampada, whose mother had eye cancer which was detected late, leading to loss of vision, is now being treated at Dr Shroff’s Charity Eye Hospital and getting chemotherapy at Indraprastha Apollo Hospital with funding support from the National Society for Change for Childhood Cancer in India — Cankids Kidscan.
“The brave heart from Nepal is luckier than hundreds of others whose eye cancer is detected late or goes undetected, endangering their lives,” said Poonam Bagai, cancer survivor and founder Chairperson of Cankids.
Retinoblastoma (RB) — eye cancer — typically affects young children under the age of five. Its incidence is low with not more than 7,000-8,000 new cases each year worldwide.
Over 90 percent RB cases are reported in low- and middle-income countries. India alone accounts for 21 to 25 percent, with 1,500-1,800 new cases each year.
In the US, practically all children detected with eye cancer manage to survive. But in India, due to late detection and diagnosis, the survival rates are low. In most cases, the disease spreads in the eye, forcing the removal of the eyeball — which means loss of vision, said Bagai.
To spread awareness for timely diagnosis and proper treatment of eye cancer, Cankids has launched a stakeholder initiative — Fight RB India — linking RB Centres across the country, specialists in the field of ophthalmology/ocular oncology, paediatric oncology, pathology and radiology, RB survivors and parents.
“Twenty-five partnering RB Centres (ophthalmology and pediatric oncology) have come together with NGOs and civil society for observing the World RB Awareness Week from May 14,” said Bagai, who has served as a facilitator since the start of the initiative in 2014.
CanKids also unveiled a “Vision 2020” roadmap “to save lives, save vision and save eyes” and fight RB in young children, she said.
“The roadmap was authored by ocular oncologist Santosh Honavar, at our behest under our Sajeev-Cankids Awareness, Advocacy and Patient Support project for Retinoblastoma,” said Bagai.
Stressing on the need for early detection of RB, Bagai said a study by Bhavna Chawla and Rachna Seth of the All India Institute of Medical Sciences (AIIMS) pointed out that the successful management of the disease depends on the ability to detect it while it is still inter-ocular (within the eye).
The AIIMS treats 200-250 cases of retinoblastoma each year, she said.
Retinoblastoma education and public awareness campaigns have led to increased referrals, decreased rates of advanced-stage detection and improved survival in other low- and middle-income countries.
Honavar, Director of the National Retinoblastoma Foundation and Director of Medical Services at the Centre for Sight, said: “The lack of knowledge by the physician first contacted by an eye cancer patient’s parents is a key barrier.”
“We have to identify the primary health care provider — the paediatrician or the ophthalmologist — educate them for early detection and ensure they know where to refer the child for immediate diagnosis and quality treatment,” he said.
“The best treatment for RB is now available here in the country,” said Honavar, who claimed an international-level result of 94 percent survival in the 1,014 children he and his teams treated in the last five years, with 90 percent of eyes salvaged and 96 percent vision salvaged.
Cancer survivor and Cankids Awareness Officer Kapil Chawla said: “As part of the World RB Awareness week we have been sending out awareness material and posters to all Regional Institutes of Ophthalmology (RIOs) and Regional Cancer Centres.”
Abhishek Mishra, another childhood cancer survivor and part of the awareness team of Cankids, said: “This year we are also doing an online branding campaign on Google, Facebook and YouTube.”
Chawla said retinoblastoma cancer survivors and ambassadors Pankaj Yadav (22), Akanksha Gupta (20), Shivam Dubey (18) and Rahul Nagar (16), are also calling upon people to pledge support and join the Fight RB India campaign.
Yadav said the message is simple: “If you are an alert parent, a paediatrician, an ophthalmologist, a photographer, or just civil society — call Fight RB India Helpline 18001236272 or email firstname.lastname@example.org <mailto:email@example.com>– help us to Fight the White. Help us get our children with eye cancer to an RB cancer centre on time.”
Savari Desai at Mumbai’s Hinduja Hospital, a passionate crusader for the cause, said: “We are hoping to rope in a celebrity couple as ambassadors and launch a national TV awareness campaign to encourage parents and doctors to be vigilant about the white cat’s eye.”
Harsh Gupta, head of Cankids Medical Support Programme, said: “Anyone who calls the RB Helpline is given details and contacts of partnering RB Centres where a child’s family can go and seek help from our social support team member.”
“NGOs like ours also provide funding support for diagnostics, treatment, accommodation, travel and artificial eye prosthesis,” he said.
Stressing on the need to study eye cancer trends in the country, Bagai said the retinoblastoma working group of India Pediatric Oncology Group of the Indian Academy of Paediatrics is gearing up for multi-centre collaborative researches on retinoblastoma management and genetic counselling and testing.
The effort is being championed by Amita Mahajan, Senior Consultant Paediatric Oncologist, Indraprastha Apollo Hospital, Delhi, and Rajeev Sarin, head of the Cancer Genetics Unit at Mumbai’s Tata Memorial Hospital.