Five-year-old Pranav was born with poor vision in both eyes. After many visits to different hospitals, he was diagnosed with bilateral congenital corneal blindness. One of the leading causes of blindness in India, especially among children, corneal blindness is caused by the cornea losing its transparency to a birth defect, infection or injury.
In Pranav’s case, doctors suggested corneal transplantation. His father, a driver, was initially hesitant, but agreed for the surgery after much persuasion. Today, Pranav is not dependent on anyone for his daily routine, and he attends school. He was lucky that he got a donor, as the parents of an accident victim donated their son’s eyes.
Not many people, though, are as fortunate as Pranav. Doctors say there is a long wait-list of patients awaiting corneal transplants. Dr J.S. Titiyal, head of Rajendra Prasad Eye Centre (AIIMS), Delhi, said there was no definite data on the exact number of patients suffering from corneal blindness in India and patients in need of keratoplasty (corneal transplantation). However, a 2015-2019 survey by the Union ministry of heath revealed that corneal opacity was the second biggest cause for blindness among people aged 50 and above and the biggest cause for blindness among people below 50.
“An ICMR-funded project to survey the disease burden and the cornea requirement will be completed by the end of this year,” said said Dr Titiyal. “The idea is to carry out registration of every patient and allot a unique identity number to avoid multiple registrations of the same patient at different centres. The next step is to allot a unique number to the corneal tissue that is retrieved (removed) from the donor and prioritising the corneal transplantation based on the central registry as not every corneal blindness patient needs a transplant.”
There is a huge disparity in tissue availability across India. While some states like Andhra Pradesh and Telangana have no wait list owing to the effective Hospital Cornea Retrieval Programme (HCRP), there is a huge demand-supply gap in the northern states.
“We have a wait list of 750 patients at AIIMS and it is not decreasing,” said said Dr Titiyal. “The requirement is 1,000 transplants a year. The challenge is not finding eye surgeons or the transplant centres but finding the corneal tissue. In 2022, only 45,000 corneal transplantations were performed though we needed to carry out at least one lakh surgeries to clear the backlog. Also, the utilisation of cornea is 50 per cent and the collection last year was 60,000. The annual retrievals should be around two lakh to avoid the backlog.”
Data collected by Sankara Eye Hospital in Bengaluru says at least 60 per cent of the recipients of the corneal transplants are children and people up to the age of 40. The hospital has a waiting list of 40 patients. “Greater awareness about eye donation can help us overcome the cornea shortage and significantly reduce blindness in the population,” said Dr Pallavi Joshi, consultant, cornea, ocular surface and refractive surgery, at Sankara. “Unlike other transplants, blood typing and tissue matching are not necessary. But we prioritise younger donors for better long term results.”
The cornea collection happens through voluntary donations and hospital retrievals. “The HCRP helped bridge the demand-supply gap,” said Dr Titiyal. “The quality of the tissue collected through HCRP is also superior as the donors are usually young. Any delay in retrieval and lapses in storage, the age of the donor, delayed consent of donor family, and medico-legal cases affect the quality of the tissue.”
Eye banks have a vital role to play in bridging this gap. To overcome the severe shortage of transplantable corneas, the LV Prasad Eye Institute in Coimbatore established the Ramayamma International Eye Bank (RIEB) in 1989. It is now the largest eye bank in Asia. It has implemented a hospital-based cornea retrieval programme (HCRP) and built a network of 300 hospitals in Andhra Pradesh, Telangana and Odisha. “We collected more than 10,000 corneas each year and suppled close to 7,500 corneas for surgeries to a vast network of surgeons across the country,” said Dr Prashant Garg, executive chair of LVPEI.
“In 1991, we set up a lab to manufacture cornea storage medium in collaboration with IFETB, in the US. The medium allows storage of excised corneal tissues for 96 hours. We produced and distributed 25,000 vials of this medium to various eye banks in and outside our country last year. We led efforts to establish the Eye Bank Association of India as a resource centre to support India’s eye donation movement and also played a key role in drafting medical standards for eye banking in India,” he said.
In India, corneal blindness occurs mostly because of infections, followed by injury and heredity. Earlier, trachoma (contagious bacterial infection of eye) and Vitamin A deficiency were the common factors causing blindness, but they are now negligible. Doctors say immunocompromised patients, diabetics, people who suffer from physical or chemical injuries and trauma, and those who take wrong medication often end up with cornea opacity.
“Not every patient needs a corneal transplantation,” said Dr Titiyal. “A child with bilateral corneal blindness gets priority over an adult, while a patient with progressive disease (fast deterioration) is preferred over an adult with one good eye. Some patients can do well with optical devices and need no transplants. The longevity and the quality of life determine the priority.”
After a corneal transplant, post-operative care is essential for a successful outcome. Dr Joshi said that patients were often prescribed topical medications like eye drops, steroids and antibiotics. In many cases, lamellar transplants that do not require stitches are performed, but patients still need to attend regular follow-up appointments. For children, receiving corrected glasses can be crucial for their visual development, especially in the early years.