It is ironical that people in the land of Ganesha – the world’s only God with transplanted body part – are not only mostly unaware of organ transplantation but prefer to stay away from cadaver organ donation apprehending “disfigurement” of the body that may prevent a departed soul from finding a place in heaven.

But is it surprising that Indians lack awareness? The fault, say doctors, is of the state, which barely spends anything to promote organ donation despite creating a law 12 years ago? Since the Transplantation of Human Organ Act was passed in 1994, India has not made much headway with the programme.

With the uncovering of Gurgaon kidney racket, issues surrounding organ transplantation have once into the limelight, though the lure of money propels the poor to donate their kidneys. As a result the trade thrives in the states.

After the storm...
“Whenever there is a kidney scandal there is a knee jerk reaction from various quarters. There is a media outcry and if the allegations seem somewhat serious a few small-time brokers are rounded up and life carries on till another such episode comes to light and the same sequence of events are reenacted,” says Chennai-based transplant surgeon Dr Sunil Shroff, who heads Multi-organ Harvesting Aid Network (MOHAN) Foundation – a non governmental organisation that promotes organ donation. 

India has witnessed roughly 1,200 cadaver transplants so far in which organs from a brain dead patient are harvested and used. “A bulk of the successful cadaver transplants has taken place in southern India possibly because people are more educated,” feels Dr S K Agarwal, Additional Professor of Nephrology at the All India Institute of Medical Sciences (AIIMS), Delhi.

Approximately 3,000 kidneys, 150 livers and a few heart transplants are carried out in a year. Of the 3,000 kidney transplants, roughly 50 per cent are from donors who are blood relatives. The remaining 50 per cent are from unrelated donors who pose ethical problems.

Little but big...
Even If one person in every million decided to donate his or her organ, India approximately will have 1,100 organ donors who can provide 2,200 kidneys, 1,000 hearts, 1,100 livers, 2200 eyes. The numbers are good enough to take care of current shortages, says Dr Shroff, an urologist at the Sri Ramachandra Medical College and Research Institute in Chennai and a member of the Indian Society of Organ Transplantations. 

Even after 12 years of having a law that recognises brain death, a large number of doctors actually do not know how to distinguish between brain death and heart death, says Dr Samiran Nundy, a former AIIMS professor who is now associated with Sir Gangaram Hospital in Delhi.

While majority of the deaths occur when the heart stops beating, in one per cent of all deaths, the brain cells die first even though heart and lung can be kept functional for two to five days using a machine. These brain dead patients cannot come back to life and they are potential organ donors.

But think of a scenario when a loved one has just been declared brain dead by doctors and you are requested to donate his or her organs. “The patient’s family will not even listen to us. They want to cremate the body as quickly as possible,” says Dr Agarwal.

The healing touch...
“There are good chances that those who approach the relatives with this rather unusual request may even be beaten up,” says a Health ministry official who is a part of a team framing a national programme on organ donation. The programme envisages having “grief counsellors” for this job in at least 200 hospitals which will have facilities for harvesting the organs. Spain (donation rate is 32 per million) and the USA (22 per million) that have successful organ transplant programmes have many such counsellors in all hospitals.

The ministry plans to amend the 1994 Act making registration mandatory for hospitals before organ harvest.  A massive public awareness campaign encouraging cadaver donation will be a part of the programme. The doctors should also be educated and ICUs must be given authority to certify brain dead patients, says Dr Nundy, who played a pivotal role in drafting the Act. 

Awareness is required to do away with myths like disfigurement. “There is only one suture line for heart and lung and another one for kidney and liver,” points out Dr Nundy. Accident victims, who can be potential donors, will have wounds and scars in any case.

“Since only the cornea is taken in eye donation, there is no need to scoop out the eye socket. There are various ways to look at disfigurement and ICU counsellors are needed to talk to the family and attending doctors,” says Dr Shroff. “Doctors cannot play the role of a trained counsellor,” points out Dr Agarwal.

The proposed national programme – for which a token approval has been obtained from the Planning Commission – envisages giving incentives like lifetime second class railway pass, health insurance and a medal or certificate to the next of kin of donors. But the provisions are being fine-tuned to plug all loopholes to ensure that the weaker sections are not exploited and incidents like “kidney-marriage” do not recur.

While laws are welcome to regulate the illegal trade, legislation alone cannot stop the crime as long as the demand and supply chain thrives. “The trade will become more secretive. People understand that they can survive even with one kidney and since poverty is abject, they need money. The surgery is relatively easy compared to heart and liver transplant. Even foreigners come here due to easy availability,” says Dr Agarwal.
Doctors are unanimous that societal awareness is the answer which can begin with a public campaign.