Dr. Bharat Shah

Dr. Bharat Shah

Dr. Bharat Shah
Dr. Bharat Shah is a renowned nephrologist practicing in Mumbai and is also the founder of Narmada Kidney Foundation. Dr. Shah shares with us the story of Narmada Kidney Foundation, his opinions about the present status of cadaver organ donation in India and his hopes of improving the situation of COD in the country.
What does Narmada Kidney Foundation do?
The main objective of Narmada Kidney Foundation is to create awareness about kidney disease. Since chronic kidney disease often progresses to kidney failure and the treatment options are limited, the prime objective of the foundation is to prevent kidney diseases, which can happen in more than 50% of the cases if proper care is taken at an early stage. But, yes, many people do progress to kidney failure and the organization strives hard to make it possible to get the best possible treatment for the patients. The best possible treatment here is kidney transplantation and therefore NKF has been trying to create awareness about organ donation, not only during life but even after death, what is called deceased donor transplantation or cadaver transplantation.
When was it founded?
The foundation was founded in 1993, when it was realized that kidney diseases were increasing in incidence and prevalence, largely because of increase in incidence of diabetes and high blood pressure. At this stage, it was realized that a large population of Indian people suffering from kidney failure could not get treatment either because they lived in areas where specialized treatments like dialysis and transplantation were not available or because of the cost of the treatments, which very few could afford.
Who were the founders?
The founders of Narmada Kidney Foundation are me and my family along with some of the kidney patients and their family members.
Why was it founded?
We sat together several times discussing the problems that kidney patients have to go through, and we decided that there should be a foundation which would help people and the society to prevent kidney diseases, and how to take care of oneself if one has a kidney problem.
How big is your organization and what does your team comprise of?
Our foundation has a membership base of about 2000 people. The foundation comprises of the chairperson, the secretary, and committee members who include doctors, and some patients and their family members.
Where are your offices?
Our office is located at Chakala, Andheri East. It is the only office we have at present.
What are the activities that your organization does? (Growing awareness, grief counseling, transplant coordination, training, public interest litigation and more)
As we said earlier, our main activity is to try and create awareness about kidney disease with the hope that that we may be able to prevent many kidney diseases. So, a large part of our activity is to educate people in residential societies, corporate offices, etc. about what causes kidney diseases and how they can be prevented. For people with kidney failure, we have regular workshops both at the foundation as well as Global Hospital to educate them about taking care of the kidneys that have failed, with the help of dialysis and transplantation.
In order to create awareness about organ donation and transplantation, the foundation organizes Organ Donors’ Day every year on 30th November, since 1997. The organization also organizes National Transplant Games, where people from all over the country participate to show that after transplant, a person can return to near normal quality of life. We also want to show that by donating a kidney, there is no compromise on the quality of life, and people continue to live a normal life.
In addition to these two main programs that are conducted annually, Narmada Kidney Foundation has a big program on the occasion of World Kidney Day, again to create awareness about a particular aspect of kidney disease. The foundation also conducts several screening camps in order to identify people who are at risk of having kidney diseases and guide them.
As for the matter of grief counseling, we do not have a grief counselor in particular because every hospital which is registered for organ transplant has to have a grief counselor. So the grief counseling is essentially done by transplant coordinators of the hospitals which are registered for transplantation. However, we do coordinate with ZTCC in educational activities.
What type of partnerships do you have locally, regionally and globally?
We do not have any specific partnerships, although now Global Hospital and Narmada Kidney Foundation conduct many activities jointly.
What have been the achievements since inception?
We have been able to create a lot of awareness about the risk factors of kidney diseases and people have started taking care of those risk factors. For example, people with diabetes and high blood pressure now come to us at an early stage, and we think that it has helped them in preventing kidney diseases. We have helped various residential societies in conducting screening camps in which we have been able to identify people who did not know that they have diabetes and high blood pressure, and thereby helped them take care of these problems, which in future could have lead to kidney problems.
We have been able to create awareness by coordinating in various festivals about organ donation. During every Ganesh festival, we coordinate with some Mandals, which try and create skits to provide messages to the society about organ donation. By the way of transplant games, we have created a lot of awareness at the national level. We are also helping people who have won at the state level or zonal level to participate in World Transplant Games. This year we are sponsoring one member for World Transplant Games.
How many donations has your organization been involved with? Can you give us details?
It would be difficult for us to say how many have been motivated about cadaver organ donation due to the activities of Narmada Kidney Foundation. There is no way of finding whether they could make the decision due to the influence of the activities done by us. But we have been able to motivate many people who have attended our Organ Donors’ Day Program and Transplant Games to go for live donations. Today, many people are scared of live donations; they have several myths and misunderstandings about it. But when they see how healthy the people who have donated their organs are, they become ready to donate their organs to their near and dear ones.
What has been the response to the campaigns done by the foundation?
There has been excellent response from the public when we had campaigns at residential societies, certain organizations like Lion’s and Rotary, and some gymkhanas. Many people have come forward to show their interest in participating in all our activities.
Are there any interesting stories related to either donors or recipients that you would like to share?
Actually, there are several donation stories, especially of the donors, but the time is limited to speak about all of them. I could write to you about some of the stories of donors who have been motivated by our programs and have gone to donate and have been very happy with the act that they have done because it has helped their near and dear one.
What are the plans for your organization moving forward?
Our main mission is to try and create awareness as to how kidney diseases can be prevented. While it would be our prime objective to cut down the incidence and prevalence of kidney diseases in our country, at the same time since our message would not go to everyone and kidney failures do occur, we are trying our best to create awareness about organ donation, particularly organ donation after death, because there is no cost to this and a lot many lives could be saved and lot many people could lead an improved life.
Causes, Issues and Challenges
What is your point of view on COD in India?
Unfortunately, awareness about cadaver organ donation has not reached the masses in India and therefore the awareness still remains very poor and therefore, cadaver organ donation activity in India is very poor. I think even the Government of India needs to take some interest in trying to create the awareness about COD and simplify the laws to make COD more practical and widely applicable in this country. There is apathy on the part of the government and if the government officials were to take it seriously and work jointly with various organizations and NGOs in trying to make cadaver organ donation applicable, it can go a long way in saving many lives.
What type of changes have you seen recently in your location, region and across India respectively?
I find that people have become more and more acceptable about organ donation after death. While we were educating the masses about COD during the early stages, the acceptance of the idea was a little difficult. But now, I find that when we talk, people are ready to sign the organ donor card immediately after listening to our talk. Earlier, there was certain kind of reluctance among people, and they would say we would think about it or talk about it. But today people come up immediately to ask for a donor card and register then and there itself.
What according to you is the reason for this change?
This is the impact of the efforts from all over the world trying to create awareness about pledging organs after death. It is happening in all corners of the world and so it is happening in our country. Several NGOs are working towards it. Several other organizations are joining with these NGOs, and the spread of the message has had a tremendous impact in making people realize the importance of pledging organs after death.
What is the need of the hour for COD in India?
The biggest need of the hour, as I see is, the Government trying to take some more efforts to create awareness and simplifying the laws. For example, in Chennai, the Government has gone ahead and made several state regulations to simplify the system. Due to this, the transplant program has really gone up very well. If a similar system were to be followed in other cities of India, I am sure cadaver organ donation will really pick up well in our country.
What has been the reaction of the donor families towards your cause?
The young generation seems to be very open in accepting the idea of cadaver organ donation, while a little reluctance comes from the senior members of the family. Since for COD, consent from all family members is necessary, at times, it becomes a little lengthy process to get consent for organ donation. But the young generation seems to be accepting it quickly.
How can the various stakeholders – Govt, NGOs, Medical fraternity, Social Workers, Masses work together to improve the situation for COD in India?
Certainly! First of all, the government should simplify the system. Today, retrieving an organ from a brain dead donor requires no special infrastructure. Any center that has a basic ICU, which can support a brain dead person on ventilator, could become an organ retrieval center. If the requirement of registering with the government is taken off and if the government was to be supportive by setting up a good infrastructure in moving accident victims from center of trauma to a center where a person can be treated in a speedy manner, the whole system can get a significant boost.
What are the main issues at the level of private hospitals?
In the private hospital setup, it again is a matter of attitude and how active that center is in transplantation and how active the management is in promoting transplantation. There are some private hospitals that are doing very well in cadaver organ donation and there are some private centers that hardly do any cadaver organ donation. I think there are two main factors here; one is lack of support or initiative on the part of the management and at the same time, lack of initiative on the part of the neurologists and neurosurgeons of that intensive care unit. They have to come forward and declare brain death in cases where brain death has occurred. Not declaring brain death is also responsible for many potential donors being lost.
Which areas does your organization need help with?
I think the Government organizations as well as the private and public hospitals should all get together with NGOs like ours and work jointly towards creating awareness and at the same time making it implementable. The most important thing is implementing a lot of things that can be done. For example, today in Maharashtra, when it comes to cadaver organ transplantation, it is mainly kidney and to a very small extent to liver transplantation; there is hardly any heart and lung transplantations. How is that going to happen unless all of us get together? Today, even if as a part of an NGO I tell people that your heart can be donated to help a person with heart failure survive, there is no center to do this heart transplantation. That is where government organizations, public and private hospitals, and NGOs have to come together.