An ideal way to treat India’s corneal blindness problem

‘General hospitals are sites for motivating corneal donations’ 
| Photo Credit: Getty Images/iStockphoto

Despite strong support for eye donation in India, with millions, including popular film actors, pledging to donate, an acute shortage of corneas persists. There is a need to perform about 1,00,000 corneal transplants every year, but only 30% of this need is being met. On the demand side, many fellow citizens lead a lifetime of avoidable sight loss, waiting for sight-restoring tissue. The solution on the supply side are the millions dying in Indian hospitals every day who are eligible to donate their tissues — but do not. What if we ‘presume consent’ and treat them all as cornea donors? News reports note that, indeed, a ‘presumed consent’ amendment to the Transplantation of Human Organs and Tissues Act (THOTA), 1994, is in the works to allow cornea retrieval from all eligible deaths in hospitals.

The magnitude of the problem

Indian policymakers are seriously considering the ‘presumed consent’ approach to corneal donations because of the scale of the problem. The cornea is the thin, clear outer layer of the eye. Infection, accidents, or congenital conditions can turn it opaque. Corneal opacities are the second major cause of blindness in India among those who are 50 years and older, and the primary cause in those younger. An estimated 1.2 million people live with corneal opacities in India and about a third can be treated with a corneal transplant. These numbers make India one of the largest populations with corneal blindness in the world. However, most corneal blindness is preventable or treatable. For those eligible for treatment, corneal transplant surgery is an effective intervention. In fact, it is the most frequently performed transplant in the world. Critical to enabling corneal transplants is an ‘eye bank’, which handles ethically sourced corneas, processes them, and makes them available to eye surgeons. India does not have enough eye banks of the necessary standard, nor does it have enough corneal surgeons. Along with procuring corneas, it is estimated that there is a need for 50 high-functioning eye banks (there are about 12 to 14 today) and 500 active corneal surgeons performing 200 transplants on average every year. With appropriate legislation enabling this approach, the target of 1,00,000 corneal transplants a year can be reached.

Presumed consent versus required request

‘Presumed consent’ addresses the problem of cornea scarcity alone. At first glance, it eliminates a lot of red tape: the permissions, the wait for a post-mortem examination, even the effort of convincing the next-of-kin. Unless the deceased has left behind explicit instructions ‘not to donate’ it is presumed that they are a tissue donor. As corneas need to be retrieved within eight to 10 hours after death, reducing any delay increases the viability of the donated tissue. Universal ‘opt-in’ should boost the supply of corneas and bring us closer to eliminating corneal blindness in India.

The universal opt-in approach runs the risk of undermining a key enabler of corneal donations: consent. Corneal donation and transplantation are a sensitive partnership between the public, the corneal specialist community, and the policymakers. The public consists of cornea donors who voluntarily donate corneas, and recipients, who value the donation and comply with follow-up care. Corneal specialists facilitate this transaction with their skills. Policymakers support this healthy cycle with appropriate legislation.

Presumed consent distorts this partnership by negating the need for seeking consent from the next of kin. While it might speed up cornea retrieval, there is little evidence that such a law is necessary to solve the problem of corneal scarcity. The countries with the best organ donation rates in the world (Spain, the United States and Portugal) do not operate a ‘presumed consent’ system. They have a policy of ‘soft’ opt-in or a ‘Required Request’ policy and seek formal consent from families before acquiring corneas — even if all citizens may be deemed as donors. In addition to ‘required request’, the key to their success is public education and investments across the cornea transplantation pipeline.

A model that works

India too has a successful model of ‘required request’ corneal donation: a hospital cornea retrieval programme (HCRP). General hospitals handle a lot of mortality and are thus sites for motivating corneal donations. In an HCRP, a grief counsellor approaches the kin of the deceased and initiates a conversation, gently motivating them to consider a donation. The donation is processed only after receiving explicit consent from the kin. While it is a delicate task, grief counselling has had remarkable success in increasing the availability of corneas for transplantation.

Of the 1,40,000 corneas harvested by the Ramayamma International Eye Bank at the L.V. Prasad Eye Institute (LVPEI) in Hyderabad, in 35 years, over 70% have come from HCRP. This year, the LVPEI marked over 50,000 corneal transplants performed, thanks to this approach. In the States of Andhra Pradesh, Telangana and Odisha, there is no waiting list for corneal transplants, unlike other parts of the country with months-long waiting lists. It has also been found that the ‘Required Request’ approach encourages cornea donation. It offers some closure to grieving relatives. Donor families often mention the satisfaction in knowing that their loved ones’ eyes live on, letting others see.

It is therefore possible for India to eliminate avoidable corneal vision loss by investing in a consent-driven donation paradigm, 50 high-functioning eye banks, and by activating 500 corneal surgeons. Let us act now.

Tejah Balantrapu is Associate Director – Science, Health Data and Storytelling, L.V. Prasad Eye Institute and Gullapalli N. Rao is Founder Chair, L.V. Prasad Eye Institute