Lakhs of organ–failure patients across India need a transplant to stay alive. The only way to meet the galloping demand is donation after death. But for most of us, the idea is still alien and unbearable. It needn’t be so

Kidney transplants started in India in the early seventies. The infamous Indian kidney bazaar emerged soon thereafter; unscrupulous middlemen flourished as they manipulated the poor to sell their kidneys to rich patients.

The Transplantation of Hu– man Organs Act was passed in 1994 to stop this illegal and unethical ‘trade’. It introduced the concept of brain death, an irreversible condition in which the brain stops functioning but the heart lingers on for a few days. Persons caught in such a limbo are the only ones who can donate organs such as heart, lungs, kidneys, liver, etc for transplantation into patients suffering from organ failure. Brain–dead patients can thus become deceased donors and cut the dependency on live donations, or so felt experts who were drafting TOHA.

But 19 years after this Act, India has little to show in terms of cadaveric organ donation. Kidney scams were unearthed in a major police crackdown some years ago. But the organ donation story has been a virtual nonstarter. Statistically speaking, 232 Indians per million population need a kidney transplant every year. Many others suffer from failure of the heart, lungs, liver and other vital organs. But India doesn’t even manage to get 232 cadaveric donations in a year (see box). Deceased donors account for barely 4% of the donor pool, with live donations by relatives accounting for most transplants. The organ–failure patient is still as helpless as ever.

First, the concept of brain death and deceased donation is still an alien idea in most states, barring Tamil Nadu, Maharashtra, Andhra Pradesh, Gujarat and a few others. "The government clearly needs to do much more to educate people on organ donation," says surgeon Sandeep Guleria from Indraprastha Apollo Hospital in Delhi.

The Union government is in the midst of setting up a national organ–sharing body; a draft of the changes in the law has been put up online for feedback.

Second, even medical professionals shy away from brain death. The paperwork and responsibility associated with such declarations are time–consuming. Before the Tamil Nadu government came up with the country’s only thriving deceased donor programme in 2008, an administrative survey in the state showed reluctance among neurosurgeons to take on the responsibility to certify brain death. Immediately, a government resolution was passed to make reporting of brain death mandatory.

Urologist Sunil Shroff from Chennai estimates that over one lakh brain deaths occur every year in India. "At any given time, every major city would have 8–10 brain deaths in various ICUs," he adds. He recommends that existing law be simplified to facilitate brain death certification and donation.

There’s also the matter of trust. A study among doctors, nurses and patients in AIIMS, Delhi, in the nineties showed that transparency in distribution of organs was important. "We found that the system has to be whiter than white. It has to be transparent if people have to believe in it," recalls Dr Guleria, who conducted the study in AIIMS then.

Dr Vatsala Trivedi, who was the founder–secretary of Mumbai’s Zonal Transplant Coordination Centre, feels the trust problem can be solved if public hospitals became active about cadaver donation. "A programme gets standardized only when it’s implemented in public hospitals. Private institutions will be looked at with suspicion of profiteering when they introduce systems," she says.

Dr Mahesh Desai from Nadiad in Gujarat feels the government should provide financial support to transplantation programmes. "It is an expensive process. It would help patients to have government support." He says the Chennai model in which patients are provided medicines by the government should be replicated throughout the country.

In 2008, Tamil Nadu appointed an administrator to chart out its deceased donor programme; issued a diktat to hospitals to identify brain death compulsorily, and floated a novel organ–sharing formula between public and private hospitals. It works well; in 2012, it managed to get 78 cadaver donations.

Jeevandan scheme has streamlined procedures and deceased donor numbers have doubled – from 13 in 2012 to 24 in the first half of 2013. It has helped 100 patients in 7 months.

Karnataka last year introduced the option of organ donor on driving license cards. "Over 40,000 people have been made aware about organ donation and over 19,000 have pledged organs in the last 10 months,” says Priyanka Shylendra of Gift Your Organ Foundation in Bangalore.

After the death of a former CM – Vilasrao Deshmukh – due to organ failure, Maharashtra managed its highest donation ever of 26 donors in 2012. Taking a leaf out of the Tamil Nadu model, it has started issuing general notifications to smoothen the cadaver donation process.

ANGUISHED EYES Bangalore’s M Murugan, 31, says he wants to live so he can see his four–year–old daughter grow into a young woman. The security guard used to work as a driver until his liver and kidneys started failing because of a genetic disorder. He needs a liver and kidney transplant and is waiting for a donor. He also needs Rs 30 lakh for the operation. His wife Geetha M says, "I can’t bear to see him suffering the pain of dialysis thrice a week. Doctors say the solution is organ transplantation and we need help to get it done.” Last year, according to an estimate, India had less than 200 deceased organ donations. The demand for vital organs runs into lakhs. For many Murugans across the country, time is fast running out.