The Gift of Life Adventure - Part II
Anil Srivatsa is an Indian-American journalist from New Jersey. Five years ago, he donated a kidney to his brother. Anil now lives in India, where he conceptualized the idea for the Gift of Life Adventure, a 50,000-mile road trip through 41 countries to spread living organ donation awareness and register more people as organ donors worldwide. Last month, we published Part I of Anil’s Donor Story. This is the second part of his story.
“Not many Indian people do long-distance, cross-country road trips like I was doing,” Anil said. “It quickly caught the attention of the media in India. This media spotlight gave me the opportunity to talk about organ donation and reach more people to spread awareness. I decided to call this journey my ‘Gift of Life Adventure.’”Indian LawAnil ultimately had two goals in embarking on this trip. First, he wanted to inform others about the laws surrounding organ donation in India.
“The majority of people aren’t aware that, according to Indian law, a person’s right to be an organ donor (living or deceased) rests in the hands of their spouse and children. In India, people fill out a short organ donor registration form and think they’re good to go. However, in reality, if they want to donate their organs after they die, they don’t actually have the final say in the matter—their family does. Nobody knows that.”#StartAConversationAnil’s second goal was to encourage the conversation of organ donation and being an organ donor into the homes of others.“In India, it’s a cultural taboo to talk about death because it is believed that, if you do talk about it, it could become a reality. Therefore, no one talks about it. Because organ donation is so closely tied to death and dying, it’s rarely ever brought up between family members at home. There’s this giant elephant in the room that needs to be addressed, so I started addressing it.”
To do this, Anil created the hashtag “#StartAConversation” and developed an app called “The Million Donor Project.” The app anonymously takes your personal information, opens up a virtual form for you to designate your choice to be an organ donor, and sends the completed form to any family member of your choosing. That family member then receives a text message that says, “I have just decided to become an organ donor. I want you to know my decision. Please consult with me when I see you next. Here is a link to receive more information.” This is done in the hopes that it will start a conversation between you and your family members about your decision and what that decision really means.“Even outside of India, in countries like the U.S., your closest family members have the final say in donating your organs after you pass.”Anil is embarking on his next cross-country trek in September and the drive will span across both North and South America. Leading up to his departure, he is working to revamp his app to make it more globally accessible in order to facilitate more of those conversations worldwide. However, even with the convenience of this app, Anil is doing this all on his own.
“When I go on these drives, I try to visit and speak at schools, colleges, big groups—whatever I can organize. However, at this point, it’s entirely a one-man show. I really want to continue fundraising and, eventually, be able to hire a staff that would run an actual nonprofit organization that does what I do. I can only do so much, but if I had an organization of people working towards the same goal, I could do so much more. On my own, I’ve spoken to more than 45,000 people over the last three years. If I can accomplish that by myself, who knows how many people I could reach with a larger team behind me?”The Fear
One of the other messages that Anil encourages through the Gift of Life Adventure is the fear surrounding both living and deceased organ donation. In Anil’s opinion, the biggest problem for many people is their personal trepidation about giving up an integral part of themselves. Anil believes this is the biggest hindrance to living organ donation.“If there are so many people who are currently on dialysis, they must have family members or friends who could donate a kidney to them—but they don’t. Why? Because they are afraid. Fear is what’s holding them back. Trust me, I had the same fears and trepidation about donating my kidney. Is my body going to be the same afterward? Am I going to be healthy if I give up one of my kidneys? Will I experience any kidney problems in the future without my second kidney? In my opinion, that fear comes from ignorance. The majority of people are unaffected after donating. For most people, everything remains the same.”“Because I’ve donated my kidney and actually gone through the whole experience, my mission is to get that message out and show people that there is nothing to be afraid of. Let me take away their reasons for saying no, give them the facts, share my own story, encourage them to reflect on their selflessness and love towards others, and, hopefully, influence them to reexamine their decision.”Helping OthersThrough Anil’s travels, he has also met people in complicated situations that make living donation difficult or impossible. He strives to help each person he meets and, many times, he is successful. Sometimes, he uses these individual cases to influence the laws in India that make organ donation—specifically, living donation—difficult.
Several years ago, Anil was introduced to a serving officer in the Indian army who needed a kidney transplant from a living donor. At the time, he was going up against the army’s healthcare system to get approved for a kidney transplant from a living donor. The army wouldn’t allow it. He was stuck in the army hospital without any means of receiving a transplant. He then turned to the Indian military’s judicial system and received an official order from the court that allowed him to be discharged from the hospital in order to receive his transplant elsewhere.“It was so upsetting to me. We talk about how wonderful and courageous our soldiers in India are all the time—how they would take a bullet for their country—and now here’s this soldier who is fighting for his life and the system isn’t helping him out.”When the soldier initially reached out to Anil for help, he was still looking for a kidney donor. He also couldn’t find a hospital in his hometown of Mumbai that was willing to perform the transplant out of fear and backlash from the government. He traveled to Bangalore, where Anil lives, to work with him to locate a living donor. Eventually, they found one: the soldier’s former classmate who had heard his story. Additionally, because the woman was not related to the soldier by blood, it would be harder to receive approval from the Indian government due to the law regarding living donation.At first, when the woman stepped forward and agreed to donate, she was overweight, which made her unfit for living donation. However, she was determined to help the soldier and dedicated six months to losing weight. After six months, she met the weight requirement and passed all of the medical tests that made her a viable match.Everything seemed to be going well. However, during this process, the woman’s sister had gotten word of what she was intending to do. Her sister also happened to be a powerful government official and she used her official clout to prohibit the transplant approval committee from giving the go-ahead on her case. The Secretary of Health then forbade all Bangalore-area transplant surgeons from performing the surgery at the risk of losing their medical licenses. However, the approval was entirely up to the transplant approval committee and this overstepped the government’s jurisdiction.Together, the kidney donor and I filed a lawsuit against the Karnataka state government that argued they had overstepped their legal rights and their coercion of Bangalore medical staff was hindering an individual’s right to life. The state government argued that the woman was receiving financial compensation from the soldier in exchange for her kidney. In response, the woman penned her last will and testament and legally bequeathed everything she owned to the Army Wives Welfare Association to prove she wasn’t donating her kidney for any financial gain.The court finally gave her permission to donate her kidney, which she did shortly after. The soldier returned to the army and is currently serving his country with his new kidney.This created a precedent for living organ donation. The law doesn’t explicitly state that a living donor must be related by blood to the recipient—it just says “related.”“By that definition, friendship could be considered a relationship—being a colleague, belonging to the same religious parish, playing on the same sports team. That was what I wanted to establish as precedent through this lawsuit. If more people understood this nuance of the law, more people would be stepping up to donate.”Anil is currently preparing to file a class-action lawsuit to better define the law so that there isn’t any ambiguity surrounding it.“The law itself doesn’t need to change—the interpretation of the law makes it difficult for everyday citizens and court officials to understand. It’s case-by-case and it shouldn’t be. One law should apply to everybody.”World Transplant Games
Anil also strives to demonstrate how great his quality of life is today, after donating his kidney. At 51 years of age, Anil signed up as an athlete in this year’s World Transplant Games (WTG) in England as a short-distance runner for Team India, also known as the All India Transplant Games Federation.“As a dual overseas citizen of the United States, I had the opportunity to represent Team USA, called Transplant America, but the American team has over 150 athletes, while India only has 13. I also chose to represent India as a way of highlighting the WTG there and, hopefully, gaining some media attention during my time competing.Arjun, Anil's brother who received his kidney, participated in the Games as well. He played golf for Team India and came in first, winning gold—one of the two gold medals that Team India won.Anil registered for the 100-meter sprint and cricket ball throw events. Leading up to the Games, he had a world-class sprinter in India help train him completely free-of-charge. She is also an Indian celebrity.“I’m hoping her celebrity status will help catch the Indian media’s attention and they’ll be more inclined to highlight the work we’re doing and how it relates to organ donation.”
In fact, during Anil’s training, two Bollywood movie producers contacted him and told him that they are interested in making a movie about his story if he did well at the Games.“It was a lot of pressure, but if a movie does get made, organ donation wins. Indians are averse to the idea of organ donation because of our country’s cultural background, but Bollywood is extremely popular. If they address this cultural taboo in a positive light, people will sit back and accept the idea, which would, hopefully, lead to more organ donors across the country.”Anil competed in both of his events on August 22nd. Although he did not place in the 100-meter event, he beat his personal best time ever. He did win gold in the cricket ball throw, securing the second gold medal for Team India.The Gift of Life Adventure ContinuesAnil sets off on his 55,000-kilometer, cross-country road trip across the two American continents soon, on September 2nd. He will set off from New Jersey and plans to be on the road for 150 days. He has set up talks and speaking opportunities along the way and has a wide network of people across the U.S. who have introduced him to different communities to help get the word out. Anil will be living in his car for the duration of the trip.“I’m giving up a lot of ‘urban comforts’ to show people that life is an adventure—and it’s also a gift you can give to those in need—hence, the Gift of Life Adventure.”
Read about Anil's adventures from his most recent trip traveling from India to England for the World Transplant Games on the Gift of Life Adventure blog and follow along on the adventures to come!Original interview transcribed, edited, and rewritten by CC Cunningham, CKF Program Manager.