Living legacy: Rotarian encourages world to donate kidneys

     It has been my privilege to write for Rotary Magazine for two years now, and I'm proud to see my story on the cover of the August issue. I've long been interested in kidney disease, because of my cousin Harry as well as having written about an altruistic kidney donation at the University of Chicago Hospitals.  So this story was a good match — it was great to get to know Anil Srivatsa, and I only wish Rotary had taken me up on my idea of sending me to India to hang out with him. You can read the shorter version of this story in the magazine here. Or you can slog through the original that I turned in below. On Tuesday I will share the sidebar, about going to dialysis with my cousin.

      India is big: 1.4 billion people over 1.2 million square miles. And dense — four times the population of the United States in a country covering less than a third of the area. 

     Meanwhile Anil Srivatsa is just one man, driving a robin's egg blue Land Rover across the enormous Indian subcontinent on a quixotic mission: to teach his fellow citizens, many of whom have only rudimentary education and embrace traditional folk beliefs, about the importance of organ donation.    

     "There is a deep cultural bias against it," he said. "There is much work to be done in this space, to counter misinformation and fear." 

     Of course he has help. The Mumbai-born life coach and entrepreneur is a Rotarian. Three months out of the year, he drives from town to town, speaking to a Rotary if there is one — there are more than 3,000 Rotary clubs in India — and assembling what villagers he can gather when there's not. He has done this in Africa, Europe and North America, and circles the globe to address business groups — in December he went to Bali to talk to Pepsi executives. 

     Srivatsa has spoken to more than 125,000 people on 550 occasions in 44 countries, 100 of those at Rotaries.

     To coordinate international support for his efforts, Srivatsa founded the Gift of Life Adventure Foundation, and on March 11, 2022 — World Kidney Day — he started the Rotary Action Group for Blood & Organ Donation, its goal to combat ignorance with information.

     "Love gets thwarted by fear, and I believe fear comes from an unanswered questions," said Srivatsa. "What I'm trying to do is answer those questions. I don't go out and tell people to become organ donors. That's a decision they can make once they learn that the fear is misplaced."

     Nor is he the only Rotarian spreading the word. Countless others have joined the effort, around the world. The Rotary of Norfolk, Virginia, to take one example, welcomed Wallace Green, named Virginia's Outstanding Senior Volunteer, who received a kidney transplant in 2015 and was moved to educate people about their importance. He told members that there are 120,000 people on the waiting list for organ transplants, and that you can be a donor at any age, and even if you have a range of serious medical conditions, such as HIV. 

     Despite this, every day 17 people on the kidney waiting list in the United States die for lack of a donated organ.

     Internationally, the need is even greater: as many as two million people around the world have kidney disease so severe they are eligible for a new kidney. They survive only through a debilitating process called dialysis where their blood is cycled through a machine and washed of the toxins that healthy kidneys usually remove. (See story below). 

     Rotaries not only invite speakers to relate their personal experience, but also bring in experts such as Lana Stevens, community educator at the Louisiana Organ Procurement Agency, who praised the work Rotary does to spread knowledge and banish fear.

     "I've spoken to many, many Rotaries over the years," said Stevens. "The Rotary really offers us a great, well-rounded way to educate a group of people, and led us to a lot of partnerships and contacts — particularly corporate contacts, who want to get their organizations involved." 

     Kidney disease touches so many lives, and Stevens has noticed how close many Rotary members are to the problem. 

     "At every Rotary I go to, there is some type of personal connection," she said. "Someone received a kidney or their spouse has. Someone in their family, or in the club. It's always nice to have those personal connections. Then everybody in that room can understand that this is happening in our backyard. Not just to somebody unconnected to us far away." 

     For Srivatsa, transplantation is certainly not an abstract or far off issue, but an intensely personal mission. Ten years ago his brother Arjun, a prominent neurosurgeon, was diagnosed with chronic renal failure, and needed a new kidney. Srivatsa donated his left kidney in September, 2014.

     "When people say I sacrificed a lot to give kidney to my brother, I don't believe that was sacrifice," Srivatsa said, pointing out that kidney donors lead "healthy, normal lives." 

     To show just how active post-transplant life can be, both brothers took a grueling mountain bicycle tour in 2015, six months after their operation. They also competed in the World Transplant Games in Britain in 2019. 

    Some organs — hearts, obviously— can only be donated after death; say after a fatal car accident. But human beings have two kidneys while needing only one to live a healthy life. So there are both deceased and living kidney donors — in equal number, actually, which poses something of a riddle that shows the complexities of the issue. Far, far more people commit to donating their kidneys after death than agree to serve as a living donor. Yet the ratio of post-mortem kidney donors to living donors is about 50-50. The reason being that living donors give their kidneys under planned, ideal circumstances. They're in the bed next to the recipient. While 95 percent of those who sign up to donate their kidneys, after death, are never able to do so, because circumstances aren't right – their kidneys cannot be harvested in time, or they become so sick that their kidneys are no longer viable. 

     While donating blood is not typically considered alongside organ donation, blood donation played a crucial role in ramping up Rotary's efforts to promote organ donation awareness.

     "Rotary has something called action groups — 21 of them, commissioned by Rotary International, attached to certain causes like environmental action or menstrual health," said Srivatsa. "When I petitioned the Rotary board for an organ donation action group, they declined … But I had a Plan B. There was an action group for blood donation. I went to the blood guys and said, 'Listen, blood and organ donation are the same thing. It's tissue, and you're donating that. We can merge this thing, into a blood and organ donation group.' They went and deliberated for some time, and came back and said, 'Yeah.'" 

     Organ transplant is not only a social and medical issue but a legal one. Great Britain changed its laws in 2020 from an opt-in system — citizens need to take the trouble to sign up to donate an organ after death — to an "opt-out" system, meaning that Britons must drop out if they don't want to participate. Rotaries around Britain held events to help explain the new law. 

     Earlier this year, the Biden administration announced that it is going to break up the United States' national donation system, the United Network for Organ Sharing, claiming that its monopoly on organs has made it inefficient.

     The law in India poses its own obstacles. The vast nation is divided into 28 states, and until recently citizens could only donate within their home state. As a trustee in the Gift of Life Adventure Foundation, Srivatsa helped change that law.

     "He is dedicated to it," said Prashant Ajmera, a fellow Rotarian. "He's the motive to bring Rotary together under one roof for organ donation. Organ donation is a worldwide cause, but it was never taken seriously. We would not be having this conversation if Anil wasn't there."

      Before 2023, in order to give or receive a kidney in India, you first had to establish residency in a particular state. Ajmera, an attorney in Ahmedabad in Western India, learned this when he tried to give his kidney to his wife Hemali two years ago and ran into a brick wall. He turned to Srivatsa for help.

     "She was going through dialysis, and the doctor recommended I register in the state of Gujarat," said Ajmerja. "I went to the hospital to register, and they said you have to bring in a domicile certificate from the state. I made the application and in four days I heard back from the police department — you are a Canadian citizen" — he has dual citizenship — "so are not entitled to register as a domicile in the state of Gujarat. So the hospital will not take you or your wife as a patient." 

     It's as if a resident of New Jersey couldn't donate a kidney that would be transplanted across the river at a hospital in New York City. 

     "As a lawyer, it didn't make sense to me," said Ajmera, who did his research and discovered that the domicile requirement was a significant drag on the transplant rate of organs nationwide. 

     "It was not only a problem for me, but it was affecting people across India," said Ajmera, who decided to take the matter to India's high court. To do that, however, he first he had to find an organization to press the suit. 

     "In taking the Supreme Court case, one of legal requirements was the need to have an NGO who would become a petitioner. We used Anil's Gift of Life Adventure Foundation to file a class action. It all happened because of the Rotary." 

     The law was changed in November 2022. Now "the law very clearly provides any citizen of India can go to any other state and register," Ajmera said. "Doctors came to me and told me this was the big hurdle, and it has been removed, making one less complication in the process." 

     In February 2023, his wife got her kidney transplant. Here too Rotary was essential. 

     "When I was facing this difficulty, one of the doctors was a member in this club. He said, 'Let's go to this hospital....'" said Ajmera, who has been a member for 20 years. "It's all Rotary connections — Rotary has helped me in all my life, connection after connection, doctor after doctor, all because of wonderful Rotary." 

     The social connections that Rotary offers take on life-or-death significance when the issue is organ donation. Take the story of a Meta program manager in Seattle, Sanketh Arvapally, whose brother needed a kidney.

     "My family needed me," remembered Arvapally. "My brother was suffering from kidney disease. I stepped forward because it was very painful to see my brother go through this."

     But Arvapally's wife had reservations.

     "While it was very natural to me, it was very difficult for my wife to absorb this," he said. "She worried about what could happen to me. Totally understandable. She was in a dilemma. She couldn't say no — it was my brother, my family. But she couldn't say yes, because she was selfishly looking out for herself, which is natural." 

     "In the back of his mind, he was nervous, he was anxious," said Krishna Arvapally, an advertising technology specialist suffering from renal failure. "His wife was even more nervous, anxious, scared." 

    Krishna knew Anil Srivatsa, and asked him to talk with his brother about being a donor. 

     "My brother knew him from his entrepreneurial network, and introduced me to him," said Sanketh. "He said, 'Why don't you go talk to Anil?' I called him and our conversation lasted two hours. He just ran me through all the challenges he'd faced; how it's no big deal. He made my anxiousness ease. He comforted me. Anil was truly an inspiration for my decision. In seeing him, being healthy post transplant, that definitely cemented my decision." 

     To help others in that situation, in late 2023 Srivatsa's foundation published a 200-page book of transplant data, "A Rotarian's Guide to Organ Donation: Celebrate Life by Giving Life," assembled by Hemali Ajmera.

     "It's designed to tell people what basic organ donation is, offering a lot of statistics and information about what different projects do, the need-to-know facts,"Srivatsa said. "Because wrong information can lead to wrong decisions. I would like to see every country have a book like this for Rotarians, specific to their situation." 

     Rotary is only beginning its organ donation push. No one expects progress here to be easy — Rotary spent almost half a century working to eradicate polio. But the organization is in it for the long haul.

     "Like polio, organ donation is a worldwide cause, and Rotary can play a wider role in this one, not only India but elsewhere," said Ajmera.

    "Rotary was enlisted to get polio out of the way," said Sirvatsa. "It took them 40 years, and they did so doggedly. There is a pandemic silently happening with organ failure that nobody is willing to recognize until it happens to them. It is growing and coming into your own neighborhood, including your family. Prevention is a big part of our push. Rotarians are on the ground. They work with their communities, have relationships with their communities. Me passing through, making one passionate speech then walking away is not optimum. You need someone on the ground always there pushing the agenda. Rotary understands that polio is almost out of the way. What's next?"