NEW DELHI, January 28: Muhammad Adil has heard about the Gurgaon organ racket. He has heard about a group of doctors who supplied kidneys on demand. He knows that’s not an option as he stares at the whitewashed walls of Gangaram Hospital, a long needle in his arm pumping blood to the dialysis machine for four hours, three times a week. His wait for a kidney is an agonising one.

His life turned upside down when a doctor in Muzaffarpur first told him his kidneys were no longer working. After several rounds of quacks and a fast-deteriorating condition, his family rented a room in Delhi and began his dialysis at Gangaram Hospital. The only way out of this painful weekly procedure is a kidney transplant.

“I had plans of coming to Delhi for a computer course after my graduation. I had no idea I would be here so soon,” says 20-year-old Adil. He hopes a match is found within his extended family in West Champaran. His relatives have pitched in, financially: Rs 5 lakh has already been spent as hospital expenses. The chance of finding a kidney outside the family is remote.

As the Gurgaon racket turns the spotlight on the thriving organ bazaar in the country, doctors believe that what fuels this is the yawning gap between demand and supply.

There are no official figures — in the absence of a national registry — but experts and medical associations estimate that each year, there are 1.5 lakh patients waiting for a kidney transplant. Of these, barely 3,500 get kidney transplants. There are an estimated 400,000 waiting for heart, liver and cornea transplants.

Plus the cost for dialysis is prohibitive at Rs 20,000 a month. Many patients go through a few rounds of dialysis only to never return. Doctors presume they are dead. Those who can afford it continue with the painful procedure for as long as seven to eight years.

So it’s not surprising that Adil’s brother Sarfe Alam says that if approached, he would have knocked on the doors of the illegal clinic in Gurgaon. “Anything, I would do anything. If I knew about the Gurgaon doctor, I would have certainly asked him for a kidney for my brother,” he says.

Experts say this is what the Human Organ Transplantation Act does not do.

“While it prohibits donors, it has no honourable alternatives for recipients,” says Harsh Jauhari, a leading nephrologist with Gangaram Hospital who is on the government panel reviewing the provisions of the existing Act.

The Act, passed in 1994, had two objectives: to curtail the kidney racket by introducing a rule that only a blood relative can be a living donor and to legalise the definition of “brain death”, hence encouraging “cadaveric organ transplants” — transplants from “brain-dead” bodies (where heart and lungs are active as distinguished from “cardiac death.”)

Once a person is dead, barring the eye, no other organ can be harvested. But as many as 37 organs, bone and tissue, can be harvested from a brain-dead body. According to one estimate, there are at least a dozen “brain-death” cases in each city each day.

The Act recognises only two categories of live donors: near relatives and those who donate “by reason of affection or attachment towards the recipient or for any other such special reason”. Even for these categories, the approval for the donation has to come from an Authorisation Committee established under the Act. The “affection and attachment” part is the grey area and hence has seen no convictions so far.

The Act’s other purpose, of encouraging cadaver donation has not taken off at all — there have been only 500-odd such donations in the country. When a patient is brain dead, relatives have to be convinced to let the organ be harvested, doctors have to be in a state of readiness and the match has to take place in hours, the kidney transplanted in 48 hours.

There are glaring lacunae in both attitude and infrastructure. “It is because the programme is individual-based and not government-based,” said Jauhari calling for an “Indian solution.”

There are some international examples that are often referred to as models. Spain has one of the most efficient organ-transplant programmes. It allows “presumed consent” as each person is given a health card that will ensure that organs are harvested in case of brain death. It is not done only if relatives register their objections. Spanish hospitals have highly skilled and organized organ coordinators who counsel patients’ families, Result: 85% of families agree to such donations.

In India, in the absence of a government campaign, fighting the mindset of families is the biggest hurdle. “I try and talk to 10 families a month but have only managed six to seven cadaver transplants in 10 years,” admits S C Sharma, consultant with Gangaram Hospital.

For the “Indian solution,” the government committee is planning a National Organ Transplant Programme that will try and address drawbacks in the national law as well as incentivise cadaver and live transplants. “I hope someone in the family agrees and then Adil will be fine in two months and we will go back to our village in Champaran,” says his brother bravely.

The tears in his eyes betray his despair.

(Tomorrow: Why cadaver kidney transplant hasn’t taken off)