New lives out of deaths
If your liver has failed and you need a functioning organ to be transplanted for you to survive, and you do not have a close relative who matches your blood group and can give you a part of her liver, then go to Chennai: this is the buzz among liver-failure patients across India. In Chennai a patient stands a much better chance than anywhere else in the country of getting a liver offer from a brain-dead person, donated altruistically.
It is not as if brain-deaths do not occur elsewhere, or relatives there are not willing to donate. When the brain of a person irreversibly dies before the heart does, the heart function can be maintained for some hours through artificial breathing support; this gives a time window to obtain family consent for organ donation, decide on whom the organ should go to and get that person ready for urgent surgery. Major organs such as heart, liver and kidney have to be transplanted within a few hours of removal. Worldwide, such deaths account for roughly five per cent of all Intensive Care Unit (ICU) deaths in hospitals. Such brain-deaths occur all over India every day. Meanwhile organ failure patients too die every day, with the former's organs not reaching the latter.
But some of them are not lost in Tamil Nadu, where the myriad and complex issues involved in converting a brain-death situation into an organ donation and transplantation situation have been addressed to a considerable extent, thanks to a combination of circumstances. The State has done 110 deceased donor liver transplantations in a period of less than two years. All other States put together have not done even half this number. Apart from liver, close to 240 kidneys and 25 hearts were transplanted from more than 120 donors. This is a donor rate of one per million population a year, which exceeds by 10 times the national average.
Tamil Nadu's Cadaver Transplant Programme completed two years by the end of September 2010. It was started as a State-wide programme in October 2008. The second year saw a near doubling of donors, to 82, compared to the first year. There was a peak of 14 donors during July 2010.
How did this come about? Is there a lesson from this that other States can learn from? Is this the most that can be achieved? These are questions that need answers in a country where medical skills for organ transplantation are fully available, but the potential for deceased donor organ donation remains untapped. In India, the demand for such organs, especially kidneys, far exceeds availability and consequently spurs illegal organ trade — the sale of a spare kidney from desperately poor live-donors.
It is primarily to prevent those from the economically weaker sections getting trapped into selling their kidneys as live ‘donations' and to comply with the World Health Organisation guidelines, that India passed the Transplantation of Human Organs Act in 1994. The law was also meant to pave the way for deceased donor (or cadaveric) organ donation from brain-dead persons. Such deaths result largely from road accident head injuries or internal bleeding in the head. However, this law provided only an enabling provision for this purpose and needed to be supplemented with a comprehensive regulatory framework to make organ distribution possible in a fair manner. Countries that have a vibrant deceased-donor programme have a well-laid-out hospital coordination arrangement that makes possible the transfer of organs among hospitals — because a deceased organ donation may occur in one hospital and a patient in need of that organ may be in another.
Plagued as it was by repeated “kidney scandals”, Tamil Nadu took a decisive step some three years ago to set up such a coordination arrangement and to remove glitches in the way of a successful deceased-donor programme. A crucial element of this was a wide consultation process involving transplant hospitals at a workshop and rounds of discussion with smaller groups of medical professionals and voluntary organisations. This active involvement of stakeholders made possible the release of a series of government orders over a period of six months. These culminated in the appointment of a convener for the State's Cadaver Transplant Programme and the setting up of an advisory committee to oversee and support him.
In establishing such a framework, Tamil Nadu had advanced-country models as reference points. But it had to evolve its own model to suit the infrastructure, the social system and the learning curve differences. When a brain-dead person's organs get donated out of humanitarian concern, the issue of who among those waiting to get transplants should be given the organs raises ethical and practical questions that have been debated in many countries. There is always a balance that needs to be established between different considerations such as how long a person has been waiting, how sick and in what dire need he/she is, and how long that organ will survive in that person if transplanted. There are also questions of how to motivate hospitals to sustain brain-dead donors, and logistics issues like the time involved in transporting the organ. Through a process of wide consultation, Tamil Nadu has been able to set up an acceptable framework that is still evolving as more experience is gained.
Organs donated altruistically by the family of the deceased really belong to society as a whole. These need to be distributed based on values that are generally acceptable to society at large if the framework established has to have long-term traction. One important result of this exercise is that despite the many complex and unforeseen issues that arise in the matter of actual coordination between hospitals, a basic trust now exists that the operation of the programme is authentic and fair and hospitals can participate freely without having to worry about the decisions taken. A contributing feature is the high level of transparency in the operation of the programme, with a website providing data to hospitals and members of the public (www.dmrhs.org).
Healthcare availability in India is skewed because of the substantial level of privatisation that has occurred over the years, and the skew is even more in the field of organ transplantation, as only a small segment of the population can afford the cost of transplant procedures in private hospitals. Tamil Nadu has taken some steps to restore the balance, with a framework that favours organ allocation to public hospitals. A third of all kidney transplantations done under the programme were by two government hospitals, out of a total of 26 hospitals that did them.
A total of 27 hospitals participated in cadaver transplantation during the last two years, 26 of them in kidney, six in liver, four in heart and one in lung transplantation. The percentage utilisation of organs is 95 per cent for kidneys, 85 per cent for liver and 19 per cent for heart. The underutilisation of kidney and liver is due to medical unsuitability of the organ, while heart is largely unutilised for want of recipients. This is in spite of the fact that the number of hospitals doing heart transplantation increased from one to four during the two years.
The second year's performance shows the donor numbers by hospital to be skewed. Out of a total of 48 approved transplant centres in the State, just three accounted for more than three-quarters of the donors and five accounted for almost 90 per cent. Of the 48 hospitals, 38 did not have a single donor. The sex ratio among the donors too has been skewed. Only 18 per cent were female, while 82 per cent were male. This probably reflects the fact that most brain-dead donors in the State were road traffic accident victims, and it is mostly men of working age that get involved in such accidents. Donor age distribution shows that most were in the active age group of 21-50.
Tamil Nadu is unique in another respect as well. This is the only State where government hospitals do liver and heart transplants free of cost, and immunosuppressant medication — a costly burden for transplant receivers — is provided free for life.
But, the State has to go a long way still. Experience shows that Tamil Nadu currently taps only 10 to 20 per cent of the realisable potential that exists for such organ donations. More than two-thirds of donors have come from just four hospitals, including a government hospital. A key limiting factor appears to be lack of awareness and motivation within the hospital itself — among the management and staff. Added to it is the lack of soft infrastructure in hospitals — adequate skills and training in certifying brain-death according to procedure, maintaining the cadaver without medical complications until the time of organ retrieval and following regulatory procedures. Some hospitals in the State need help to tackle the dilemmas relating to allocation of scarce resources — ICU beds and costly equipment such as ventilators. Public and charitable hospitals face the dilemma on what to prioritise — whether a critically ill person whose immediate life-saving demands these resources, or whether a brain-dead cadaver should be preserved so that two to three organ-failed persons can be saved from future mortality.
All over India brain-deaths occur on the one side and organ failure patients die on the other. It is in the hands of governments and civil society to make the connection. Tamil Nadu has begun making that connection.
(V.K. Subburaj is Principal Secretary, Health and Family Welfare, and P.W.C. Davidar is Principal Secretary, Information Technology, with the Tamil Nadu government. J. Amalorpavanathan is the convener of Tamil Nadu's Cadaver Transplant Programme. C.E. Karunakaran is the trustee of the National Network for Organ Sharing, based in Chennai.)