A few weeks ago, an article in the papers spoke of a State where some organisations had created a database of those willing to donate organs and had enrolled 13,000 people within a month of their commencing the initiative. With the country facing an acute scarcity of organs for transplant, this must surely have been welcome news. Or was it? Look beyond the headlines and it becomes apparent that the entire exercise is little more than a PR job carried out by the organisations that are setting up the database. By pretending to help, it makes a mockery of the desperate situation that patients needing organs find themselves in and does very little to enhance the availability of organs. Surely, an Organ Donor Database will help make available more organs for donation. Right? In this case, wrong.
Organ donation has become a good cause that organisations and individual celebrities feel can be leveraged for publicity. So every now and then you will see the odd film star pledging to donate his or her organs. His/her photo with the donor card will dutifully be flashed in the newspapers and on television and this is supposed to help increase awareness of organ donation. In effect, this has achieved very little. How many cadaver donors have materialised because the family found the donor card in the wallet?
Organ Donor Databases (as distinct from Registries that maintain a list of those who are in need of organs) are worthless when there is no mechanism in place to follow up and ensure that if anyone on the list is unfortunately near death, their pledge is acted upon. In most of the cases these amount to little more than gathering a set of names, addresses and contact numbers, dumping them on a website and issuing donor cards. Many of those who have pledged their organs are often youngsters, some even in their twenties. In the normal course of events, it may well be more than 50 years before most of them reach a stage where their organs could potentially become available for donation. So, who is following up?
If these organisations or individuals truly want to help those who are in need of organs, the logical approach would be to set up help desks or post grief counsellors in hospitals with Intensive Care Units for early identification of potential donors. The next target are homes for senior citizens where volunteers could visit regularly to propagate the benefits of organ donation. These are the two places where organs could potentially become available in the near term. But the challenge in both these centres is in ensuring that these help desks are run by voluntary agencies that are not in any way connected to the hospital. The last thing one would want is for the relatives to feel that the hospital was overly keen on harvesting the patient's organs. Such a targeted approach would have a much greater effect in making organs available than enrolling thousands of twenty somethings in what is a meaningless exercise.
There is a limited good that comes from getting the movie star to endorse organ donation for creating awareness. . But without a mechanism in place to capitalise on the increasing awareness, the benefit of such awareness will be lost. Doctors often find it delicate to broach the topic with the relatives without sounding like vultures out to prey on the patient's body parts. So a standard mechanism for medical and paramedical staff to handle this situation should be created as part of the ICU protocol. Why not have the DIL (Dangerously Ill) form given to the relatives for being signed (as a confirmation of having informed them that the patient is dangerously ill) contain a question asking about their willingness for organ donation?
Waiting for a donor
There are believed to be over 200,000 patients in India waiting for a kidney donor and an equal number who require corneas to get the gift of sight. The percentage of cadaver donors is still small in proportion to the overall transplants done. According to the Indian Society of Organ Transplantation, the total number of kidney transplants performed in 48 of the leading hospitals in India from 1971 until 2011 was 20,952 and the number of liver transplants since 1995 was 329. These small numbers serve to remind us of the magnitude of the problem. More worryingly, the numbers are not increasing as much as they should year on year to meet the demand. According to a 2009 study, India ranked second in the world in live related kidney transplants but only 40 in the total number of transplants. This again draws attention to the need for a well-run cadaver transplant programme.
While an active cadaver donor programme is a necessity, there have also been calls for reviewing the Transplantation of Human Organs Act of 1994 (with its subsequent amendments) to revisit the entire issue of non-related donors. The current system where an Authorisation Committee can permit non-related donors after assessing that “affection and attachment” are the only reason for donation is riddled with holes and leaves plenty of room for corruption.
In an unregulated environment, opening up non-related donation may lead to exploitation of the poor but a supervised programme on the lines of the Iranian model could be thought of. Iran permits non-related organ donors but the transplants are done under government supervision. The donors receive free health insurance for life as well as other state-supervised benefits. I would say a programme where the government screens and approves non-related donors and provides them free insurance cover for life and a sizable advertised fee is a good idea. This would help thousands of patients waiting for a transplant across the country, while still keeping the transaction non-commercial between the donor and the recipient.
However, this idea is likely to find few takers in our country where our politicians and middle class will take the moral high ground and claim to be the protectors of the poor against exploitation. while condemning hundreds of thousands of desperate patients to a slow, painful death. It's time to relook at some of the provisions of the Act and many of the issues around organ donation. Thousands of lives depend on this.
(The writer is a Consultant in Internal Medicine with a significant interest in healthcare IT, besides being a television anchor person. He can be reached at firstname.lastname@example.org)