BY - SURESH GUPTAN, MUMBAI

THE EYE BANKING EXPERIENCE

The Eye Bank Association of India (EBAI) set up in 1989 had an early start in efforts to create a seamless national movement to promote eye donation and quality eye banking. Unlike many NGOs tackling a national problem, it chose from the very beginning to build up an all-India membership of eye banks and offer official representation and expertise all over India. However, its self-imposed system of periodic renewal and rotation of office bearers has caused some lack of continuity and focus in its operations. While EBAI has not succeeded in blending individual initiatives of members into professional management, its experiences, successes, and shortcomings, could be usefully studied by the organ donation movement.

In its initial years, some key inputs like a container design for safe cornea transportation under Indian ambient temperatures, and financial support, came from the International Federation of Eye Banks (IFEB), USA. And the conventional wisdom of "spreading awareness" was EBAl's main operative policy. Soliciting and distributing pledge cards to citizens was a key program. The prevailing belief was that India lagged in eye donation mainly because its large multi lingual, low literacy, population suffered from:

(a) Lack of knowledge

(b) Negative religious beliefs

 (c) Fears of facial deformation

SPECIAL TELEPHONE NUMBER & TV CLIPS

However EBAl's founders, as far back as 1991, had got a special three-digit tel. no sanctioned by the Dept. of Telecommunications. The concept was that citizens, who dial the number 119 (later changed to 1919) anywhere in India, would be automatically connected to their nearest eye bank for the quickest response. It is another story that this facility is not being utilized in the manner envisaged, or to the extent possible, by the eye banking community.

The Human Organ Transplantation Act, 1994 passed without any consultation with the ophthalmic and eye banking community was perceived as a hasty fumbled step. But EBAI systematically pushed its national eye donation awareness effort to the maximum. Two multi-language TV ads featuring celebrity icons Aishwarya Rai and Amitabh and Jaya Bachchan started to be telecast all over India. The unique feature of these 50-sec clips was their near zero cost, neither the stars, nor producer.

CHANGING TRACKS

So EBAI switched tracks to experiment with a new concept in the late '90s. The steady growth in eye bank memberships from all over India that balanced falling support from IFEB, provided the necessary confidence. Drawing on the pioneering, intense, but low key efforts by Ramayamma Eye Bank in Hyderabad, and an experimental success at Shushrusha Hospital, Mumbai, EBAI decided to shift focus on to ICU, Trauma, Surgical and Medical Wards of large Metro hospitals on a national scale. Post-death counseling of relatives of deceased patients was held out as the key. And assured cornea collection, younger healthier eye donors, quicker enucleation, better tissue evaluation, and utility of electronic and static systems for effective localized awareness programs, were the perceived advantages.

HCRP

HCRP is the acronym for EBAl's Hospital Cornea Retrieval Program. Parallel to experiments by progressive member eye banks, EBAI conducted a series of Seminars over two years, with support from the Ministry of Health, New Delhi. to spread this concept, The first, at Delhi, was for Hospitals of the Defense Services, Railways, and ESIS network, followed by sessions in Mumbai, Hyderabad, Coimbatore, Bangalore, Kolkata, Trivandrum and Jaipur. Now, HCRP operated by Army, Private and Government Eye Bank - and - General Hospital partnerships, have spread to twelve hospitals over seven cities in five states. The various models available for study have social workers, nurses, doctors, college goers and Post Graduate, Ophthalmology. There students serving as counselors. A summary of results for year 2000 shows: -

(a) 1250 eyes collected from motivated donors (about 68% of national total)

(b) Recorded counseling success between 8% and over 30%

(c) Average donor age down to 53 years from 69 years

 (d) Cornea Utilization for surgeries raised to 62% from the 15% recorded for home collections.

(e) Retrieval of skin, (and heart valves), through counseling, as a distinct possibility.

(f) Success of counseling (barring Muslims) discovered to be independent of geographic location, languages spoken or economic status of donors' families.

Hindrances to spread of HCRP have been the old mind sets of eye banks which rely solely on voluntary eye donations, apathy of hospital administrators to the concept of counseling, lack of govt. / legal compulsions and a shortage of dedicated corneal surgeons to drive the movement.

VIRTUAL ORGANIZATION AND EXTRAPOLATION FOR MULTI ORGAN RETRIEVAL

EBAI has also been simultaneously creating a 'virtual organization' by networking with institutions like the Indian Nursing Council, Trained Nurses Association of India, Colleges of Social Work, the Police, NRI groups, Management Schools like the Indian Institute of Health Management and Research (IHMR), Jaipur, and the Govt. of India, to create excellence and build models for the future. The Authorities are also considering inclusion of 'Counseling for organ retrieval' as a topic in the syllabi of nurses and social workers.

The next step forward should be to recognize the essential symbiosis between the two variants of post death counseling in hospitals and to work towards their integration. Normal deaths and post-mortem cases could yield eyes, skin, heart valves etc. And brain stem deaths (less than 3% of hospital deaths), which offer limited counseling opportunities -albeit of longer durations - can access internal body organs. Organs retrieved in the first case are relatively cheaper to process, are needed in larger numbers, and are accessible to everyone. But in the latter case, the increased complexity and higher costs involved restrict the possible beneficiaries. So broad pointers to the way ahead are:-

(1) Effective networking and affiliations between organizations dealing with various human organs.

(2) National demands to be raised for motivated retrieval of organs from all hospitals.

(3) Necessity for serious debate on the issue of costs of counselors, transplant coordinators and  post-operative patient maintenance.