Organ Transplants: Medical Fraternity, Not General Public, Needs To Step Up
The potential of organ transplantation in saving and/or prolonging lives is immense. Yet, it’s been struggling to pick up in a significant way in India.
How can states across India provide the much-needed impetus to organ transplantation? Mohan Foundation’s Lalitha Raghuram tells us from experience.
Organ transplants prolong the lives of millions of people around the world. Yet, organ supply is an issue, and in India particularly, organ donation statistics at 0.08 per cent per million indicate a critical shortage.
The potential, however, is immense. Doctors A Srivastava and A Mani of the Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow, in a paper early this year had surmised using 2013 numbers that if the total number of road accident fatalities in India was 137,572 – with head injury being the cause of death in 40-50 per cent cases – the total organ donation shortage of the country could be met if even 5-10 per cent of these persons served as organ donors.
Certain states have managed to step up action in this area, with the government’s efforts aided by private organisations. Tamil Nadu is one such leading state in the country, whose efforts Swarajya covered in November. Reportedly, after a kidney scandal came to light, where an entire colony had its women selling one kidney for paltry sums (the colony came to be known as “kidney bazaar”), M Karunanidhi took it upon himself and started the “Cadaver Transplant Program” in 2008.
Mohan Foundation (“Mohan” is an acronym for “Multi Organ Harvesting Aid Network”) was started in Chennai in 1997 by transplant surgeon Sunil Shroff, who has been at the forefront of deceased organ donation and transplantation in India.
Lalitha Raghuram, the country director at Mohan Foundation, is based in Hyderabad. She emphasised to Swarajya, in an interview, the need for hospital sensitisation in order for these programmes to succeed: “Contrary to what is commonly believed, the most difficult task is not counselling the families; the difficult part is to sensitise the medical fraternity about this cause and the need for being part of this organ donation movement.”
Excerpts:
Ms Raghuram, we know that Tamil Nadu is the leader in organ transplants, but recently we have heard about Telangana making good strides in this area. Any significant trends that you have noticed?
Without going too much into the statistics, I would say that all southern states are doing well. After Tamil Nadu, Telangana and Andhra Pradesh are seeing an upward trend, and now Karnataka has picked up. Of course, Kerala has seen a dip.
The positive effect, especially in Telangana and Tamil Nadu, is that organ donation is happening even in the smaller districts. We are witnessing hospitals in Warangal and Karimnagar showing more interest, and couple of organ donations have happened. So, I would put this as a significant trend – that it is not restricted to the state capitals.
Since when has this change been happening, and how has it become possible?
In the last one year. There has been greater awareness and greater networking between hospitals. For instance, Apollo in Hyderabad. Let’s say they have a tie-up with a hospital in Karimnagar; there is a brain death there, and they are able to convince the family, and the donation happens. So it is no longer restricted to only certain hospitals. There is greater hospital sensitisation.
I have always maintained that the public is very willing to give. I never had any issues with the public saying ‘yes’ to organ donation of their near and dear ones. It’s just that we had to have our own house in order, our infrastructure in place.
We’ve seen that even in government hospitals where poor patients come, they are very interested in organ donation, and when they are motivated and counselled that it is going to benefit five to six people, they see that there is a lot of good to it. Only that they want transparency in organ distribution. If you can convince them that there is no malpractice here and the ethics is in place, they are most willing to give. So the issue lies mostly in the hospital domain, not in the public domain.
With such great benefits involved, it’s a win-win for all, so why don’t hospitals do more of these?
Let’s go to the root of the problem. In medical school, doctors are not taught how to declare patients brain dead. Also, since the Transplantation of Human Organs Act, 1994, talks about brain death as well as about organ transplantation. So the impression is that you have to declare brain death only for the sake of organ donation. Whereas, in the Western world, brain death is declared irrespective of whether the organ donation will happen or not.
But that perception is slowly changing among Indian doctors – particularly among the southern states. As a result of which, young doctors especially are declaring brain death and more organ donations are happening.
There is definitely a positive change, and I’m very confident that we’re going to see a large number of organ donations in the next five years.
The need is so great. One would expect many more donations to be happening…
If you see my inbox, there are more than 25 emails every day asking for organs for family members. How desperate people become when their loved ones need an organ!
What exactly is going for Telangana in this area?
When the state government takes it up, naturally, there is more machinery, and more rules and controls are in place, and more cooperation from everyone. Mohan Foundation was there in Tamil Nadu since 1997, but things picked up after the government became proactive.
Similarly, in Hyderabad also, we started in 2001 and worked on our own till 2013, when we helped start “Jeevandan”, the government’s Cadaver Transplant Program. We have to work very hard to put in place a government body so that everything happens in a streamlined manner.
Like Jeevandan in Telangana and also in Andhra Pradesh, we have initiatives all over the country – we have Navjeevan in Rajasthan, Mrithasanjeevani in Kerala, Jeevandsrthakathe in Karnataka, and similar bodies in Mumbai, Pune, and Nagpur. It started with Tamil Nadu, and we are now part of the advisory committee of several state governments.
As an NGO (non-governmental organisation), you’d made efforts in these two states and they are successful. How can this be scaled up in other states?
I think the most important thing is good public-private partnership – the government and the NGOs working together. Like we have our transplant coordinators, who work with Jeevandan in Telangana, they are posted in Osmania and Gandhi hospitals.
They are trained social workers from institutes like the TISS (Tata Institute of Social Sciences), all colleges of social work and nursing – trained in counselling and coordination. We have trained more than 2,500 transplant coordinators across the country – we have a presence in Chennai, Hyderabad, Bangalore, Delhi, Jaipur, Nagpur, and also Trivandrum.
Why not in other states or cities?
We go to places where we have strong resource people. Money is not the only issue.
We need to have passionate people – we are not selling Pepsi or Coke here. That is our USP – passionate people. Many of those heading our centres in Mumbai, Nagpur, Jaipur, and Bangalore, for instance, are themselves recipients of transplants or donors.
I, too, was the first employee of L V Prasad Eye Institute and then executive director of Eye Bank Association of India, and was looking to get into multi-organ donation work. I met with Dr Shroff and leading doctors in Hyderabad, but the major turning point came when my teenage son met with an accident and was declared brain dead. We donated all his organs and from then on got fully involved in this.
An underlying passion is very important for a cause like this. We need to have partnerships with such people. This is what takes us to those places. State governments could also help us connect with such people.
What are some other ingredients for success?
Good public-private partnership, good media participation, and also religious leaders to talk about organ donation – these would all help. In fact, I call it the Panchasutra: public-private partnership, media participation, trained transplant coordinators, excellent support from the hospitals, and good legislation and organ donation network.
Legislation is in the hand of the state, health being a state subject; so, are there varying legislation across states?
Not much. Most states have adopted the Central Act. Only Telangana has its own Act – the AP Transplantation of Human Organs Act, but it’s a copy of the Central Act.
When you say you need excellent support from hospitals, what are you referring to? Is it storage facilities?
You don’t need storage because the organ has to be saved and transplanted immediately, because there are so many patients waiting.
Just that when there is a brain death, there are several departments that need to be involved in this; for example, in the ICU (intensive care unit), the patient has to be maintained well on the ventilator, and the nurses and doctors have to work in tandem to ensure that the organs are perfusing properly even after brain death, so that the quality of organs is maintained.
Then comes good counselling and good coordination because most donations are from road-transport accident victims, and when the person is declared brain dead, it automatically becomes a case of post-mortem, so forensic doctors and police have to be involved. So you need to have the wherewithal to undertake all these things on time. The hospital has to be geared up. You can’t run helter-skelter at that time; the hospital has to have a good rapport with all these departments so that it happens like a well-oiled system.
Sometimes, the organ-donating families may ask for help to take the body back to their city in an ambulance, for instance. And you should be able to accommodate such requests because for their acts of generosity, small little things need to be taken care of. At that time, you cannot go running to look for agencies to arrange all this; you should know how to take care of it. They need the body back within a time frame, to conduct the rituals; otherwise, they tend to get angry at such a sensitive time. So you have to ensure the family’s interests are primary.
Once a couple of donations happen in a hospital, all these things will be put in place; it takes experience to do this. So, as an NGO in this area, we have the wherewithal and experience; we work closely with the hospitals.
So, it has to begin with having enough doctors in place to declare brain death. According to our laws, four doctors have to declare brain death – form No 8 of the Indian Organ Transplantation Act – and all the tests have to be done. All this is necessary. After that, the things I have mentioned – good ventilators, coordination with different departments, police, etc.
Is transplantation a high-cost procedure?
Yes, it is a very high-end surgery.
Is that why the number is small?
No, but donations can happen anywhere. That does not require any costs. Just that the hospital has to be geared up to do that.
What is NOT in place?
Some hospitals don’t know how to do it. It is in the medium-sized and small hospitals that the problem arises. Awareness among the hospitals is needed. And also, greater awareness among the public. Some people tend to think that it is against their religion to donate organs. But we’ve had religious leaders’ conferences and all have endorsed donations unanimously.
Do transplants come under Ayushman Bharat?
Yes, they are covered. In fact, Arogyasri of Telangana also covers heart, kidney, and liver transplants.
From Telangana, is there a takeaway for other states for organ donation?
Yes, good public-private partnership. Because you need an NGO that will fuel this whole programme. Government cannot do everything. You may have legislation, you can have good hospitals, you may have doctors and a good organ-distribution network, but if you don’t have an NGO that will ensure that this whole thing is put in place, which includes public awareness, hospital sensitisation, training of transplant coordinators, etc – all that infrastructure still wouldn’t produce organs. Someone to handhold all agencies is needed.