Monday, 23 Oct 2017

The Unequal Second Chance

201716Mar

The Apollo Group is one of the best known names among private hospitals in the country. So it was a bit of a shocker when the Delhi Police claimed on Friday that it had cracked a kidney racket operated by a group that included the personal staff of doctors at the Indraprastha Apollo Hospital. 

Reports said the racketeers identified patients in need of kidneys and then located donors who were typically poor and resided outside Delhi. 

The hospital issued a statement, distancing itself from the racket and clarifiying that the accused were not its employees. Reports also quoted the hospital authorities as saying they were victims of an organised racket aimed at cheating patients and the hospital.

Whatever may be the result of the police investigation, the shocking revelation has again underlined the uncomfortable fact that life-saving transplants can be an opportunity for profiteering in organs. 

The case also has a bearing on another critical aspect of transplants: organ donations. The government, healthcare experts and NGOs are all trying to get more people to donate organs on account of a massive demand for them.
But recently a few doctors have been ringing alarm bells about how the transplant ecosystem in India is skewed in favour of private hospitals. 

Now that a well-known hospital brand is under a cloud, the scandal could plant doubts in the minds of the most wellmeaning people who may want to pledge their organs.

As it is, troubling questions about the altruistic motives of private hospitals are raised by family members of brain-dead patients when they are approached with a request to donate organs.

 

Dr Muneet Kaur Sahi should know. She works as a counsellor with Mohan Foundation, a not-for-profit that promotes organ donation and transplantation. Sahi's work involves talking to families and encouraging them to donate organs of their loved ones who have just passed away in some of New Delhi's leading private hospitals. Needless to say, discussing organ donation with the family of a person who has been declared brain dead isn't for the faint of heart.

 

Will the Needy Get the Organ? 
Over the past five years, the doctor has counselled more than 50 families: she was able to convince 17 of them to agree to donate the organs of their family members. 

The counsellor admits that the job can take a toll. In every case, the family is in a state of grief when Sahi approaches them. According to the seasoned counsellor, the common questions asked by bereaved families are: What is the process? When will we get the body? What will the body look like after the organs are removed? Who will get the organs? Will the needy get it? The last question is a fascinating one, and perhaps one of the most difficult for Sahi to answer. 

The families may want to know whether the organs will go to a patient who is unable to afford a transplant. Sahi has a different take on the word "needy". "I tell the families that a person who is dying for want of a life-saving organ is, according to me, a needy person and that's just how it is." 

Sahi may be right, but the question captures a significant irony in the organ donation programme in India. Although campaigns are aimed at reaching out to the altruistic side of the common man, in reality such donations seldom benefit the poor as most transplants happen in private hospitals. 

India desperately needs organ donations as the country faces a huge shortfall of organs for transplants. According to the Union health ministry, there is a demand for 2 lakh kidneys against an availability of 6,000 (See The Need for Cadaver Donations). Similarly, while there is a demand for 30,000 livers, only 1,500 are available, and in the case of hearts, the demand is for 50,000 while the supply is 15. 

In December last year, Union minister of health and family welfare JP Nadda had highlighted the problem in Parliament. "There is a huge gap between the demand for and supply of human organs for transplantation.... The government accords a very high priority for increasing donation of cadaver organs to bridge the gap between the demand for and supply of organs and save the lives of a large number of persons suffering from end-stage organ failure," he said. This is where, medical experts say, cadaver donations can make a difference. They advocate that brain-dead patients need to be looked at as a source for the much required organs. 

According to Mohan Foundation, "guesstimates are that it (the number of brain deaths) is close to 1,00,000 a year and that at any given time every major 
city has 8 to 10 brain deaths in various ICUs." The foundation also says that 4-6% of deaths in a major hospital are brain deaths. 

"In India, road traffic accidents amount to approximately 1,40,000 deaths a year, of which almost 67% sustain severe head injury, resulting in brain death (as per a study published by the All India Institute of Medical Sciences, Delhi, in 2008). This means there are almost 93,000 persons who become brain dead and are, therefore, potential organ donors." 
Cadaver organ donors in India are only in the hundreds now although the number has doubled from 196 in 2012 to 411 in 2014. Sunayana Singh, CEO of Organ India, which promotes organ donations, says people need to be made aware of the dire need for organ donations. 

"They should know it is the right thing to do. Right now, when families are told about brain death (and organ donation), they view it suspiciously. Ideally, every family should know it is a question that could be posed to them." 

Organ donation should also be in the school curriculum, she says. According to Sunayana, several middle-class Indians are forced to go to racketeers due to the shortage of organs. "I know people who have gone to Sri Lanka and Singapore for transplants. If push comes to shove, people will go to racketeers. How long can they wait? What will they do if there is no healthy donor in their family?" 

Rich vs Poor 
It is in recognition of the grave shortage of organs that the government set up the National Organ and Tissue Transplantation Organisation (NOTTO) in 2014. NOTTO has been designated as the apex centre for the coordination of procurement and allocation of organs, according to priority, across hospitals. 

Significantly, the government is also expanding Non-Transplant Organ Retrieval Centres (NTORCs) across the country, which would enable hospitals that do not carry out transplants but have ICUs and other infrastructure to facilitate cadaver organ donations. Such centres are also staffed by counsellors who would broach the topic with families; they are being set up in both government and private hospitals. 

Even as the government has done much to help people in need of organ transplants, it overlooks a massive gap in the transplant ecosystem in India. The fact is that rural India and the poor are almost completely out of the picture as there are just a few government hospitals that conduct transplants. This is the reason why the NTORC project becomes troublesome. 

Kidney is the Most Donated Organ 
Note: Figures are of national deceased donor transplantation; Source: Mohan Foundation 

Several transplant specialists and counsellors ET Magazine spoke to affirmed that, in the current situation, even the organs donated at government hospitals would most likely go to private hospitals. The poor would hardly benefit from cadaver donations as transplants are done only in a handful of government hospitals, experts say. 

According to a paper co-authored by Dr Sanjay Nagral of Jaslok Hospital, Mumbai, and published in the Journal of Clinical and Experimental Hepatology last December, the most conspicuous imbalance in liver transplants in India is the difference in activity in public and private sectors. "We estimate that currently less than 2% of liver transplants take place in public institutions. There are some obvious consequences of such massive dominance by the private sector. 


Our survey indicates that except three, all other active centres offer packages in the range of Rs 20 30 lakh, which is beyond the reach of the common citizen, including the middle class." Speaking to ET Magazine, Nagral says the charitable argument in the context of the dominance of private hospitals "is that at least some people get saved; (or that) at least the rich or the middle-class patients can be saved. But this may not be socially acceptable". 

"To go to the people at large and ask them to donate organs and still have a situation wherein the same people may not be able to get transplants because of the cost is a disturbing situation," he says. Nagral adds that India needs to ensure that enough hospitals conduct transplants. This is well within capacity, if taken seriously, he says. "Why is it that only 2% of liver transplants in India happen in government hospitals?" he asks. 

According to the transplant specialist, there are a few peculiarities about organ donation in India. "First, there is no other country in the world where transplants are almost restricted to private hospitals. Second, in no other country do people pay out of their pockets. In Europe, the government pays for transplants whereas in the US the insurance takes care of the bills." 

Nagral reckons that the campaign for organ donation can be made more ethically and socially acceptable, with the state providing for transplants at government hospitals. "All that the government needs to do is identify 25 centres across India — at post-graduate medical teaching institutes or government hospitals — and make them centres of excellence in transplants." As of now, in the absence of any facility for transplants in rural areas, patients have to travel to cities for treatment. 

The West isn't the Best 
Doctors and public health activists in developed countries too have been raising concerns about the manner in which money is playing a role in getting wealthier people easier access to organ donations. Given that the West has a lead on organ donations, their systems have been in place for decades. In the US, for instance, the United Network for Organ Sharing, or UNOS, assigns organs based on medical urgency, time spent on the waiting list and other such. 

Of late, questions have been raised on whether the established organ-sharing protocols are skewed in favour of those with deep pockets. A study by Dr Raymond Givens at Columbia University Medical Center, New York, suggests that wealthier people have a better chance of getting a transplant done as they are better able to afford related tests and travel to get on more than one transplant centre's waiting list. 

A story published by Associated Press last year, based on Givens' study, explained that wealthier people were able to get their names on the waiting list at multiple centres. "Patients on multiple lists often must pay for a new set of tests, which can range from $23,000 for a kidney to $51,000 for a heart, one study estimated, plus be able to get local housing or travel on short notice if an organ becomes available," the article said. The study pointed out that multiple listing occurred only among 2% of those seeking a heart, 6% seeking a liver and 12% seeking a kidney. 


It also said that death rates while waiting for an organ were higher among those on a single list versus multiple ones. The US media had earlier questioned whether the late Steve 
Jobs of Apple took advantage of the organ allocation protocols in the country on account of his position to get his liver transplant done in 2009. In contrast, India has only recently set up an apex authority and has yet to deal with the complexities and ethical issues that invariably arise in the context of organ donation. 

Waiting at AIIMS 
A visit to a dilapidated dormitory maintained by AIIMS in Delhi for patients awaiting a donation is revelatory. Kiran Devi has been living at what she calls the dharamshala for the last six years. Initially, her husband Jai Prakash, a labourer, needed a transplant and was sent to AIIMS from Hajipur in Bihar. She gave him a kidney. That process took three years. But disaster struck again — within months. 

As Jai Prakash returned home after the transplant, his younger brother Suman Kumar, 33, was recommended for a kidney transplant. This time Suman's sister Basanti Devi — Kiran's sister-in-law — became the donor. Given that Basanti Devi was new to Delhi, it was decided that Kiran would continue to stay at the dormitory in order to help out her brother-inlaw. Now it is almost three years since Suman came to Delhi to get the transplant done. In all, Kiran has been staying at this dharamshala for over six years. Her daughter Vaishnavi is also forced to live in the dormitory and has yet to go to school. 

There are around 20 patients who have been living at the dormitory for extended periods, waiting for a transplant. The patients and families interviewed by ET Magazine said they have heard of cadaver organ donations but do not know the exact procedure. "When we ask, we are told that cadaver donations would happen as per priority and that since we are not from Delhi we would not figure in the cadaver register," says a patient, who did not wish to be identified. 

In the absence of clarity on when a kidney transplant would happen, patients have to be on dialysis — at times for years. In some cases, the patient dies waiting or is penniless by the time his treatment is over. Dr Saudan Singh, director of the recently set up NOTTO, says the main problem when it comes to patients from rural areas is that they are not readily present when they receive calls from hospitals that have donors. And in the case of transplants, the deadlines are always tight. "Whenever a donor is available, we get alerts from the hospitals concerned and we send them allocation preferences. The first preference is given to government hospitals. But if the patient is situated far away, he will not be able to benefit and so we give it to private hospitals," says Saudan Singh. "That's not a rare occurrence," agrees Dr Vimal Bhandari, who is set to take charge of NOTTO later this month. 

By way of example, Saudan says they recently got a call around midnight from a Chennai hospital that had heart and lung from a donor. The blood group was the rare AB positive. "We called AIIMS but they did not have the recipient on standby. The surgery has to happen within four to six hours and so the heart could not be used," says Saudan. Senior doctors at NOTTO agree that a large share of transplants is performed in the private sector. But they add that their duty is to save lives and that they do not go into the background of recipients. "We don't see rich or poor, we see the need to save lives. 

Organs should go to Indians. Organs should not be wasted," says Saudan. Bhandari adds that a patient would need Rs 10,000-15,000 per month for medication after transplant. "Can the poor afford this kind of expenditure?" he asks. The NOTTO doctors say there are no renal experts, gastroenterologists and other such in rural areas, making it that much more difficult to envision more transplants in rural areas in the coming years. 

They also point to the need to recruit specialists at government hospitals. Dr Avnish Seth, director of gastroenterology at Fortis Memorial Research Institute,     Gurgaon, says the government has begun to take into account the need for specialist facilities for the poor and that the proposed setting up of six AIIMS is a step in that direction. Seth says, "90% of all transplants are done at private hospitals." He argues that there is no getting around the fact that transplants are an expensive affair and that government hospitals as of now have little to offer to the poor who need treatment. 

Seth says, as per NOTTO's rotation system, whenever a government hospital finds a donor, government hospitals are given preference for those organs. Similarly, when a private hospital finds a donor, the first preference is for private hospitals. But if there is no recipient in the government pool, then it is used by private hospitals. When told about NOTTO administrators stating that often government hospitals do not have the recipient ready as they live far away, Seth says: "It shows their lack of preparedness — that's all." 

Seth agrees that, as of now, most organ donations would not benefit the poor, although he expects the process to become cheaper as the scale of donations and transplants increases. "Regardless of where the donation happens, it will come to private hospitals. That is an acceptable anomaly. You can't have everything perfect when you start out. This is trickle-down. As of now, at least those who can afford treatment can be saved."
 
By KP Narayana Kumar, ET Bureau
 

 

 

 

 

Organ Donation,

Current Blog