India's organ deficiency: How struggle for second chance at life gets extremely difficult

Anita Singh, a 40­year­old from Noida with both her kidneys failed, sold her house earlier this year so that she could continue to pay for her dialysis.
Singh has been waiting for a transplant for nearly eight months and needs dialysis twice a week. Her husband Virendra Kumar's kidney isn't a match and relatives couldn't provide her any respite either. Her husband and she have approached five hospitals in the National Capital Region for an O+ donor.

Like around 170,000 others who live with failed kidneys, she is still waiting.

While statistics show donations are not nearly enough to meet the requirements, the issue is not just about getting more people to donate organs. The country needs to gear up its infrastructure to address shortages and also prevent wastage of organs that do get donated, said transplant specialists as well as government and non­government organisations. Cost is prohibitive in private hospitals and government hospitals often don't have the facilities or trained manpower.

The struggle for a second chance at life in India can get extremely difficult for patients in need of a vital organ, especially for those who are poor.

But, there are encouraging signs as well.

Amendments to the Transplantation of Human Organs Act (THOA) and the launch of the National Organ and Tissue Transplant Organisation (NOTTO) have created a streamlined organ transplantation system, said experts.

The country's organ transplant programme has also gained momentum over the past five years through repeated government and media campaigns that have raised awareness about organ donation.

These efforts have helped increase the rate of organ donation in India to one in 2 million people in 2015 from one in 20 million five years earlier, said Avnish Seth, director of Fortis Organ Retrieval & Transplant (FORT) at Fortis Memorial Research Institute. "Two decades ago, nobody thought that organ donation was possible in India," he said.

The utilisation rate of these organs, too, has improved, said Sunil Shroff, managing trustee of not­for­profit organ donation and transplantation organisation MOHAN Foundation.

Utilization — harvesting of the organ from a donor and successfully implanting it on the recipient — of kidneys is almost 95% and liver, about 85%, he said. "This is in line or better than international standards."

The proportion of families allowing hospitals to transplant the organs of a brain­dead patient has also increased, according to some.

For instance, the Organ Retrieval Banking Organisation (ORBO) of Delhi's All India Institute of Medical Sciences recorded a 42% consent rate for donation in 2015 compared with 10% in 2010, said Aarti Vij, faculty incharge of ORBO.

"People are warming up to organ donation as an option in case of brain deaths," said Vij. "But this is still not enough."

As awareness and donations improve, the infrastructure to handle the organ transplant programme still has problems.

For instance, the number of transplant centres and licensed hospitals for vital organs, though increased since 2011, is still insufficient, said Vij. There are 50­60 licensed hospitals for liver transplant, 220 for kidney, 30­35 for heart transplant and around 10 heart and lung centres, according to statistics from FORT and ORBO. MOHAN Foundation's website pegs the number of approved transplant centres and hospitals with valid licences at 32 for heart, 153 for kidneys, 41 for liver and nine for lungs . Centres or hospitals which facilities to transplant the pancreas are abysmal ly low at three, according to the organisation.

The number of heart and lung transplants performed in India is far lower compared to other vital organs, according to available data — 110 hearts and 37 lungs in 2015 when 50,000 hearts and 20,000 lungs were required, according to FORT.

Another issue is that, at present, most transplant facilities are in metropolitan cities. "Bihar, with its population (of about 100 million), doesn't have a single fully functional kidney transplant centre," said Jatinder Kumar, group medical director of Paras Healthcare, which recently got a kidney transplant licence for its hospital in Patna. "Cases where patients had to travel to Delhi, Mumbai and Kolkata for kidney transplants are common."

Experts said at least 90% of India's transplant activity is carried out in private hospitals, while most of those who need organs are dependent on government hospitals, where the cost of treatment is a fraction of that in private facilities.

Naveen Kumar, a 36­year­old from Hyderabad who got a new heart earlier this year, said he spent `30 lakh on the procedure, including on the medicines and the tests that were conducted post operation. Most patients in India, where very few have insurance cover, cannot afford that.

There is also a need for more trained manpower, said experts.

For instance, very few government hospitals have the ability to perform the somewhat "complex" procedures for heart and lung transplants because, apart from not having the facilities and technology, they don't have enough trained surgeons, said MOHAN Foundation's Shroff. "The number of hospitals in the government sector is in single digits for (heart and liver transplantation)." At the same time, a majority of donors for organs like hearts, lungs and livers are located in government hospitals, he added.

Lack of facilities and trained staff reduces accessibility and results in patients travelling long distances — often to cities like Delhi, Mumbai and Bengaluru — for a new organ. Longer distances could potentially lead to an organ being wasted due to the increased transportation time, according to Prathap C Reddy, chairman of Apollo Hospitals Group.

The distance also means the patient may not be able to make it to the hospital when the organ is available. "It is difficult to approach the recipient in such cases. The transplantation window for vital organs like the heart is also very small," said Saudan Singh, director at NOTTO.

Ensuring successful transplants without wastage becomes difficult when accurate and current data are not provided by hospitals, Singh said. "If the waiting list is not maintained at the hospital level, it is very difficult for NOTTO to allocate an organ when a cadaver donor is available."

Among its duties, NOTTO is also in charge of maintaining all registry data from states and regions in order to coordinate transplant procedures for organs and tissues outside a region.

"Health is a state matter," said NOTTO's Singh, adding that all states needed to be proactive in promotion of organ donation.

According to him, schools, institutions, universities, hospitals and NGOs needed to actively contribute to increasing awareness of the programme.

Several states, including Punjab and West Bengal, have not adopted the Transplantation of Human Organs Act, Fortis' Seth said.

According to ORBO's Vij, there is a need to expand the facilities. "To begin with, a kidney transplant facility should be started at every medical college," she said. "This can be achieved by training at least 15% of existing faculty or consultants of the surgical departments of state medical colleges of the country."

Public­private­partnerships are crucial to maximise the existing transplant infrastructure to cater to a greater segment of the population, said MOHAN Foundation's Shroff. "(This) would mean that the government hospital patients will be helped in private hospitals where the transplants take place...to ensure equitable distribution of organs to both rich and poor."