What is cadaver organ donation? Well, for many it is still an alien word but not for most of the Surtis. Almost a decade ago, an entrepreneur from Surat and an active member of various reputed industry associations operating in South Gujarat, envisioned to carry out noticeable work in the field of organ donation. Though it looked impossible at first instance, he brought it into reality by his leadership, conviction and perseverance.
Nilesh Mandlewala, renowned social worker and recipient of several awards for his noteworthy contribution in various social services and President of an NGO called ‘Donate Life’ in Surat is the man with the mission. With his passion and support from his family, Nilesh Mandlewala has taken Donate Life to new heights by saving many lives through cadaver organ donation.
Celebration of ‘World Organ Donation Day’ on 13th August, 2016, is indeed incomplete without taking a plunge into the journey of a person who has dedicated his life for making people aware of ‘Cadaveric Organ Donation’
In a tête-à-tête with Mira Anajwala from SOCONSE, Nilesh Mandlewala shares his candid views on Organ Donation.
Soconse: What is the reason behind your passion for this work of cadaver organ donation?
Nilesh Mandlewala: It is very important to have the valid reason to start work in any direction and accidentally I found that in 1998. In 1998, my father Vinodbhai Mandlewala was diagnosed with kidney failure. His angioplasty was done under the supervision of Dr.Bharat Shah at Hinduja Hospital, which lasted till 2004. After that my father had to take approx. 700 dialysis for 7 years till he passed away in 2011. Hence, I and my family had to go through the mental trauma, which the family of organ failure patients has to go through. Since we belong to well to do family, seeking advanced & treatment was not a problem for us, but in any case the patient has to deal with the physical pain. My encounter with other patients of kidney failure at a dialysis centre made me realize that some concrete step should be taken to give a quality life to the patients of organ failure. Temporary treatment like dialysis can give patient a quantity life but to have quality life, it is necessary to replace the failed organs from the patient’s body. My inner voice coupled with an opportunity to interact with the President of Gujarat Chamber during his visit to Surat in 2005 inspired me to move ahead in the direction of creating awareness for donating organs of brain dead since 2005.
Soconse: It is said that every NGO has hidden commercial purpose. What is your take on this?
Nilesh Mandlewala: It’s a general belief that any activity towards the service to society is carried out with a hidden commercial purpose, but the very purpose of carrying out this activity of counseling to encourage cadaver organ donation; and facilitating organ donation can never be fulfilled if it is attached with any commercial aspect. For a very simple reason that Donate Life only plays a role for cadaver the cadaver organ donation and no commercial aspect is involved. After receiving kidney, it is sent to the Institute of Kidney Disease and Research Centre (IKDRC), Ahmedabad; which decides as to who should be donated that kidney.
Besides that my father was a patient of kidney failure, who had to take dialysis for 7 years. Yet I as an activist of ‘Cadaver Organ Donation Drive’ did not register his name in the list of ‘Kidney Recipients’. Because I and my family believe that instead of my father, whose age was 70 years that time; someone with more responsibilities in younger age should be donated kidney that my father could have been donated. So, when you’re working for such noble cause, you have to think selflessly and be empathetic enough to take rational decisions.
We’ve come across the instances wherein Donate Life was approached by the beneficiaries of organ donation, who wanted to make a humble donation (in terms of cash or kind) towards the NGO Donate Life, as a gesture of showing their gratitude. However we have made a policy of strictly denying any kind of such donation, because acceptance of payment for organ donation is considered as a ‘Sale of Organ’; which is completely against the objective of Donate Life. Donate Life works with a motive to serve anyone who is suffering from Organ failure regardless of any discrimination of caste, economic status or any such biases.
Soconse: What kind of challenges do you have to face while carrying out this activity?
Nilesh Mandlewala: The journey of Donate Life began with the first Cadaver Donation from Surat’s Ashktashram Hospital in 2006. In this decade long journey, we have faced multifold challenges. Interacting with the strangers and convincing them that their relative (who is admitted in the hospital) is brain dead was easier said than done. On the Spot Counseling of people whom you have never met before and encourage them to donate the organs of a brain dead relative used to enrage people so much that they abused. At times, people whom we counsel get so agitated that we could have been thrashed by them.
But all these challenges could not hold us back in our endeavours. As I felt the pain of my father who was suffering from kidney failure and the suffering of my family who dealt with such tough times, I have neither lost my calm during such instances and nor have lost faith in Lord Dwarkadhish, who has blessed me to be instrumental in carrying out such a noble activity of cadaver organ donation.
Soconse: How do you manage to spare time for this activity along with your personal and professional life?
Nilesh Mandlewala: When you are working for such cause, you have to be ready to work for day & night no matter what the occasion/festival it is and it is impossible to succeed without the family support. My family has supported me right from the beginning and has been supporting till date. My wife, Reshma and sons have always been quite supportive while I had to deal with the day as long as 48 years. When we started in 2006, we didn’t have everything structured on our hand. The whole process of ensuring organ donation involves various steps starting from Counseling, Police inquest to PM and it took us several years to streamline everything.
While working for organ donation, I have missed many important family functions and could not even stay with parents during their sickness. But working for such noble cause has given me a satisfaction that I had a role to play for saving some lives. I can derive this satisfaction only with the constant support of my family members, who have always made it sure that I can actively and continuously work for organ donation.
If I talk about my Business, it may have gone below in my list of priorities as I had to share my focus between my business and the social services. But I would say that organ donation drive requires you to be on your toes around the clock because anytime you can get a call from the Doctors & Institutes and you have to effectively keep on coordinating with various parties.
Soconse: What is your vision for Donate Life?
Nilesh Mandlewala: ‘No Live Donation, Only Cadaveric Donation’. Looking at the striking facts, every year in India,
- Approximately 2 lakh patients of kidney failure require Kidney Transplantation, as against that only 4000 kidney transplants are done in India,
- 1 lakh people suffering from acute liver failure need Liver Transplantation, against which only 500 liver transplants can be carried out and
- merely 50 Heart Transplants are done as against the requirement of 50,000 cases of heart failure, who’re in a dire need of heart transplantation
- 1 lakh patients with damaged cornea need cornea transplant (often referred to as keratoplasty or a corneal graft) and against which 25,000 such patients can be cured with donated corneal tissue.
If we consider the Brain Dead people for donating their precious organs, it can save life of those who suffer from organ failure along with giving them a gift of Quality Life. Life of the patient suffering from kidney failure or liver failure can be saved if the patient’s relatives donate organs to them but live donation always involves a risk. However, in case of heart failure, transplantation can only be made possible by encouraging cadaveric donation. Hence, Donate Life counsels the relatives of a brain dead person for donating the organs of brain dead so as to give a quality life to the needy. Donate Life also looks forward to start a ‘Skin Bank’, ‘Tissue Bank’ and ‘Bone Bank’ in Surat. Skin bank can contribute immensely for treating the patients with Burn injuries as high as 80% to 90%. While the Tissue bank can be of great help to the children suffering from valve problems, Bone bank can be a boon to the patients with major bone fractures. Bones collected through ‘Bone Donation’ activity can be sent to the Tata Memorial for further processing, after which the processed bones are sterilized in the Bhabha Atomic Research Centre. Plus point here is that the donated bones can be saved till 4 years and unlike blood you don’t need to fulfill any matching blood group like criteria to transplant donated bones.
Whereas the long term vision of Donate Life is to serve the kidney failure patients by setting up a state of the art kidney hospital in Surat along with increasing awareness about ‘organ donation after brain dead’; our ultimate aim is to replace the Live Organ Donation completely with the Cadaver Organ Donation. Keeping this vision in mind, we strive to undertake transformative steps in the field of Organ Donation in India.
Soconse: What message would you like to give on the day of ‘Organ Donation Day’?
Nilesh Mandlewala: My message to everyone on the World Organ Donation Day is that if you find any case of Brain dead around you, come forward and join hands with Donate Life to regenerate another life that is fighting against organ failure. Donated organs of brain dead person can be the reason of someone’s revival. Your initiative in this direction will give new life to not only the person who is benefited through organ donation but it will also prove as a blessing for the beneficiary’s near & dear ones.
On this World Organ Donation Day, let us take a pledge donate blood while you are young and donate kidney, liver and heart after brain death. Visit website of Donate Life to register as a cadaver organ donor or for any other related need.