As many as 2 million Indians are corneally blind. Every year, another 30,000 are added to this figure. Half of them can get their sight restored through corneal graft surgery. Against the annual demand for 100,000 corneas, only 16,000 are available. The only hope for the majority of victims lies in eye donations. But the tragedy of those waiting for eye donations is inexplicable. Points out G Ganesh, executive director, Eye Bank Association of India, Hyderabad: "The gap between the demand and supply is because there is such a low awareness about how easy and noble eye donations are."
Nothing can be nearer the truth. Ask Noorsaba, a grief counseller, who has been working for the last two years in Delhi to persuade families to let corneas be removed before funerals. When she first went about her job in April 2006, she backed out saying that this was not what she wanted to do as it was so emotionally wrenching. But slowly, she watched other grief counsellers persuade bereaved families on how they had a great opportunity of letting two people see if they agreed to the eye donation. Ever since, Noorsaba has been able to get 80 families to agree to the donation. But it is a very poor figure, she says repeatedly, stressing that most families just do not agree because of grief and also because of some myths.
One of the myths she has to contend with is that the person who donates his or her eyes would be born blind in the next birth. Another view, held widely, is that as God has given this body, it should be returned in the same way to Him. And a third issue is this: If God has decided not to give eyes to someone, why should we try to overrule this by helping the blind see!! As a result of such hurdles, even many of those who have pledged their eyes upon their death are nonetheless cremated without donating them, as the relatives do not consent to this in that emotionally charged moment.
Low awareness
Dr. Radhika Tandon, Professor of Ophthalmology and officer-in-charge of the National Eye Bank at the Rajendra Prasad Centre for Ophthalmic Science, All India Institute of Medical Sciences, New Delhi, says that as eye donations are not seen favorably in India, there has to be an awareness campaign stressing that it is wonderful to donate eyes as it would help two blind people to see what the world looks like.
His campaigns failed and he was insulted and ridiculed. But Mazumdar did not give up. When his mother died, he set an example by donating her eyes. That was the turning point.
Impressed by his dedication, a number of individuals and organisations helped him set up an eye-collection clinic. The Dholka Eye Hospital he then set up was his first stepping-stone. Mazumdar received invitations from all over Gujarat to open similar eye hospitals. Today, with nearly 70 eye-collection clinics, Gujarat has the largest eye-banking system in India. AT 70, he continues motivating people wanting to one day set up a modern eye-delivery system in India so that millions can get out of their dark world and see the beauty of life around them.
The cornea is the clear surface of the eye. Like a window, it allows light to enter the eye. Vision could be markedly reduced or lost if the cornea
becomes 'cloudy' or scarred. This condition is known as corneal blindness. It occurs due to injuries caused by accidents, malnutrition, infection, chemical burns and
congenital disorders. A majority of the cases of corneal blindness is in rural areas. This is mainly due to eye injuries caused during agricultural activity. Injuries also result from dangerous games like gulli-danda or from bursting firecrackers.
The sight of corneally blind can be restored through corneal transplantation. The only way to obtain this invaluable cornea is through donation. More than 90 per cent of corneal transplant operations successfully restore vision in people suffering from blindness due to corneal problems. Infants born with cloudy corneas can see clearly after transplantation.
Practically anyone can be an eye donor. Even poor eyesight and age don't rule out donors. One can bequeath one's eyes by taking a pledge to donate. However, it requires relatives and friends to ensure that this happens soon after death, usually within six hours. Spectacle users, persons who had cataract surgery, diabetics and hypertensives may also donate their eyes. The ultimate decision about usage for transplantation will be made after detailed evaluation. Next-of-kin can also consent to a donation if the deceased hasn't signed a pledge form.
Shortage of trained personnel
Making matters worse is a serious shortage of trained cornea surgeons, skilled eye bank managers, state-of-the-art cornea collection centres, slipshod transportation facilities, and more. Tragically, many corneas that are collected go unused, as there aren't sufficient numbers of corneal surgeons to transplant them. As against an estimated 500 cornea surgeons needed in India, there are only around a hundred, with an insufficient number of technicians to support them.
Many pledge their eyes, but after death, their families are reluctant in their moment of grief. They do not permit doctors to remove the eyes from the dead. That is why grief counselors are so important. They are trained to deal with the tender moment and persuade the families of those who have pledged their eyes to let it happen. Dr. Tandon points out that one way to overcome the shortage of counsellors is to motivate hospital staff themselves on the importance of eye donations, as these staff - and the necessary infrastructure - are easily available. Doctors and nurses can also motivate family members to agree to donations.
Corneas can be obtained either by a voluntary donation or through the Hospital Cornea Retrieval Programme. Under this programme, adopted by the eye banks, an eye donation counselor employed at a multi specialty hospital motivates the family of the deceased to donate the dead person's eyes. This method ensures that the quality of the cornea collected meets the standards of quality eye care. Even though this is an excellent strategy, the progamme is not sustainable, as it is a cost intensive exercise and calls for tremendous effort on the part of the eye banks. Adds Ganesh: "Only a focused approach where the community participates will help eye donations pick up."
1. The donor's family receives a certificate of appreciation from the eye bank.
2. The eyes are taken to the eye bank and evaluated by a trained eye bank staff.
3. Tests are carried out and the report is sent to the corneal surgeon.
4. The waiting list is referred and the recipient is called for corneal transplant. Corneal transplant is performed. Periodic follow-up of the recipient is done over time to ensure that the graft is successful
A survey of the Indian Council for Medical Research showed that cataract was majorly responsible for 55 per cent of total blindness. Another survey by the National Programme for Control of Blindness included cataract, refractive errors, corneal opacities, glaucoma, trachoma and vitamin A deficiency as the major causes for blindness. The solution, Dr. Tandon says, is to ensure that there is no Vitamin A deficiency - especially in young children - as it is one of the main causes of blindness.
Eye banks evaluate the donated corneas to certify if they are fit for transplantation. The corneas are then removed from the eyeball and preserved in special storage solutions that can keep them healthy for up to two weeks.
Poor collection
While there are several hundred eye banks throughout the country, it is estimated than only about a dozen of them account for one-half of the corneas collected. Indeed, some of the others are but collection centres with just a person trained to extract the whole eyeball and a refrigerator handy. However, these centres are registered as eye banks, which portrays an inflated picture of the eye banks in India. True eye banks call for high investments and as most lack the necessary infrastructure, they are unable to collect enough eyes.
Orbis, a non-profit, global development organisation dedicated to eliminate avoidable blindness by strengthening the capacity of local eye health partners, has been working in India for the last two decades. It augments collection of corneas and strengthens eye banks in India with training programmes for doctors, support staff and grief counsellers. Says Dr. G V Rao, its India Director, "Eye banking procedures are quality sensitive, and need adhering to international medical standards - careful assessment of donor tissue, quality cornea processing and storing, documentation, efficient cornea distribution and an effective network. ORBIS in India has been focusing on overall improvement in increase in cornea collection through regular awareness, quality eye banking management including human resource management."
If eye donations have to catch the public imagination, a lot has to be done in terms of creating better awareness. It's certainly do-able, feel experts, even in our developing context. As an example, right next door Sri Lanka has created awareness of doantions to the extent that giving one's eyes is widely seen as a noble activity. India is much further behind, and the efforts of the few organisations involved need to be supported and strengthened quite a bit.