Key Policy Action Needed to Scale Sight Restoration in India
This year India celebrates the 35th year of the National Eye Donation Fortnight, an annual two-week event from August 25 to September 8 that encourages the community to pledge to donate their eyes after death to help the millions of men, women and children who are needlessly suffering from corneal blindness.
According to the National Blindness and Visual Impairment Survey India 2015-2019, while the overall prevalence of blindness nationally has reduced, corneal blindness has increased and it now the primary cause of blindness in individuals under 50 years old.
“As a country, we have come a long way since the launch of Fortnight in 1985,” said Lorraine Misquith, SightLife senior manager of Advocacy, Greater Asia. “Together, we have successfully increased the number of corneal transplants through professionalization and standardization of eye banks, which play a central role in the collection, processing and distribution of corneal tissue to those who are living in darkness due to corneal blindness.”
In 2019, there were approximately 27,000 corneal transplants performed in India – a 30 % increase from the past year. A critical factor in this success is the mainstreaming of the Hospital Cornea Retrieval Programme (HCRP), an extensively proven procurement model based on a partnership between eye banks, hospitals, mortuaries, and the community where the eye bank is provided all necessary access to facilitate cornea donation. A 2017 study by All India Institute of Medical Sciences (AIIMS) found that corneal tissue recovered through HCRP are better quality than those from voluntary donors, and thus more likely to be used for sight-restoring transplants.[1]
While India has been great strides in corneal transplants, the demand is vast in a country with the largest population of corneal blind in the world. In context, in the U.S. – with a quarter of the population of India and a small fraction of cases of corneal blindness worldwide – there were approximately 85,000 corneal transplants in 2019 alone. At current donation and utilization rates in India, to meet the country’s needs, it’s estimated that 270,000 donor tissue will be required to perform 100,000 corneal transplants per year in India, an approximately 4-fold increase from the present availability of donor tissue.[2]
Continued progress in India can be made through community level awareness and activities which strengthen a culture of eye donation in the country. Further, it’s even more critical to enact supportive government policies to support the donation process not just in the community, but also in hospitals and mortuaries where there is a higher rate of transplantable donor tissue due to quality control measures implemented within these entities and more.
If all high-mortality hospitals and mortuaries across India notify eye banks of patient deaths, there is the potential to significantly increase the number of eye donations to be used for sight-restoring, life-transforming transplants across the country.
At a hospital level, AIIMS, New Delhi, has already paved the way by enabling a powerful, new software-based notification system, the National Death Registry of India (NDRI), through which the National Eye Bank is notified of hospital deaths via email and SMS. At KGMU Hospital in Lucknow, e-hospital software is being used similarly to notify the KGMU UP Community Eye Bank. If extended to other high-mortality hospitals, software such as these can provide the platform required to standardize reporting of deaths to facilitate eye donation.
As a society, we cannot deny sight-restoring transplants to people living in darkness when it is within our power to alleviate their suffering. In addition to public awareness campaigns, on this 35th National Eye Donation Fortnight, we need to seize the opportunity to adopt policy measures to further increase access to donors.
The National Organ and Tissue Transplant Organisation (NOTTO) and the National Programme for Control of Blindness and Visual Impairment (NPCB & VI) must play a key role to play in adopting and implementing mandatory death notification, in partnership with eye banks and high-mortality hospitals.
The bottom line: We urge government leaders of India to enact proven policy that requires mandatory death notification – if we act together, we can help the millions who are needlessly waiting in the dark for a sight-restoring corneal transplant.
[1] Sharma, Namrata & Agrawal, Nikhil & Maharana, Drpraful & Agarwal, Tushar & Vanathi, Murugesan & Vajpayee, Rasik. (2017). Comparison of Hospital Cornea Retrieval and Voluntary Eye Donation Program in Eye Banking. Eye & Contact Lens: Science & Clinical Practice. 44 Suppl 1. 1. 10.1097/ICL.0000000000000320.
[2] Noopur Gupta et al, Eye Donation and Eye Banking in India, the National Medical Journal of India, 2018, Vol. 31, Issue No. 5, pgs 283-286.