Spring 2008
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Over one thousand children develop retinoblastoma annually in India. However, myths prevail in our country that the growth (‘puvvu’ in the local language Telugu, meaning ‘flower’) in
The eye cancer control team at LV Prasad Eye Institute (LVPEI) in Hyderabad, is aware of its enormous responsibility as a tertiary eye care center, to prevent and mitigate the devastation of late diagnosis. Many families who made it to the Children’s Eye Cancer Center at LVPEI had paid attention to the sibling or parent who had identified a white glint in the child’s eye. None of them had heard of the symptom or eye cancer in children.
We must create widespread awareness about the cat’s eye glint (‘leukocoria’) as the typical early manifestation of retinoblastoma. But what does it take to create awareness in a land of varied cultures and languages, amidst multitudes besieged by myths? How do we reach out to a population of a billion?
Diverse radio, television, print and folk media offer a good network. Advocacy groups, including specialist doctors in major health centers, collaborate with the media to convey the importance of early detection, through health news-sheets and airtime. The task would also be streamlined by targeting nodal experts – local, specialized resource of primary care physicians and pediatricians who are the public’s first point of contact; followed by a media blitz to educate people of all ages and backgrounds.
In 2005, we were Inspired by the UK Childhood Eye Cancer Trust (CHECT) SeeRed poster. Our Central Audio-Visual Unit sought permission to translate the poster into three local languages (Hindi, Telugu and Urdu), to educate general physicians and pediatricians about procedures of early detection, across the southern state of Andhra Pradesh. The translations were refined over several drafts, and a grant from SightSavers International funded A3 printing.
In March 2005, a presentation at the Concept Meeting of the
We modified the poster with close up pictures of the cat’s eye glint, and translated the text into Urdu and Telugu. Mailing lists of physicians and pediatricians were obtained, and both the SEERED and LVPEI poster were mailed out during March – June 2006 to approximately four hundred physicians / pediatricians, for display in clinics and health care centers across Andhra Pradesh.
While no scientific pre- and post-intervention research was done to ascertain impact, Dr Santosh Honavar, Director, Oculoplasty, Orbital Diseases and Ocular Oncology Service at LVPEI, received correspondence
Two years later Dr Honavar commented “In 1997 there used to be 30 cases of retinoblastoma seen in one year. Now every year at the LV Prasad Eye Institute, we see about 150 retinoblastoma cases. The number of referrals has clearly increased as a result of educating pediatricians through this poster campaign.”
Dr Honavar established the comprehensive Ocular Oncology Center at LVPEI in 2000, the only such service in India. Together with Dr Vijay Anand P Reddy, Director of Hyderabad’s Apollo Cancer Hospital, and LVPEI Consultant Radiation Oncologist, he has relentlessly given media interviews to extend awareness.
Inspiration for video presentation came from TUCCA in Brazil, which produced the International Network for Cancer Treatment and Research (INCTR) public service announcement on detecting photoleukocoria as an early sign of retinoblastoma. Although the LVPEI Central Audio-Visual Unit (CAVU) re-created the video with an Indian child and Indian accent voice over, we did not receive permission to release it.
In 2007, the CAVU produced a Public Service Announcement on early detection of retinoblastoma in Telugu, Hindi, English and French, for radio broadcast. Efforts are on to publicize these in local radio/FM channels, by soliciting free airtime.
The poster campaign is a good beginning in public awareness. We now plan to launch a multimedia campaign, led by a short video titled ‘Retinoblastoma: Catch the Disease Early, Save a Child’s Life’ produced by Dr Savari Desai and Dr Suryasnata Rath, both of whom have specialized in ocular oncology under Dr Honavar’s tutelage. This short film will serve well as an advocacy tool for a mass media campaign. We are now sourcing support from television channels to provide prime airtime free of charge.
Dr Desai, an award-winner at the prestigious 2006 world video competition of the American Academy of Ophthalmology, says “Imagine how many children would survive if we could inform each and every parent that getting the eyes checked could actually save the child’s life! We have proof from the results of a case series study of 466 children who were diagnosed, treated and followed up over a three year period at LV Prasad Eye Institute from January 1990 to December 2004, that just as in developed countries, a developing country like India too can achieve 95% survival rate if the cancer is diagnosed early and the children receive appropriate treatment.”
The agony of the family when a child loses sight, eye or life to retinoblastoma compels us to overcome the communication obstacles that prevent early detection and access of available curative treatment. We aim to imprint on as many minds as possible that retinoblastoma is a curable cancer, to say “watch out for the cat’s eye glint in a child’s eye, take the child to an eye doctor even if you think you cannot afford treatment”.
Standard treatment options of chemotherapy, focal therapy, external beam radiation and enucleation are available in India, and palliative care services are offered at some centers. A considerable number of families come to LVPEI from the four states of South India, and we can cautiously say that in Andhra Pradesh, Tamil Nadu, Kerala and Karnataka, there is greater public awareness of available sight-restoring treatment.
However, late diagnosis continues to be a limitation to successful therapy. Perhaps the solution for India lies in producing a squadron of journalists sensitive to childhood cancer issues, who would join hands with the medical community to generate public awareness of retinoblastoma - the curable childhood eye cancer. Media advocacy, here we come!
Awareness
L.V. Prasad Eye Institute, Hyderabad, India.
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