David Sarna’s problem began a little more than 20 years ago with an ear infection. While they were examining him, doctors discovered he had high blood pressure and a small amount of kidney damage. For Sarna, who was in his early 40s, it was the first inkling of kidney disease.
Sarna did everything he could to protect his kidneys. He switched to a strict vegetarian diet and submitted to regular monitoring, delaying the inevitable need for a transplant for more than 15 years.
Kidneys act like a filter. They remove waste materials from the blood and maintain the balance of fluids in the body. As kidney function slows down, other organs struggle. People with kidney disease may have a suppressed appetite, headaches, nausea and fatigue.
About three years ago, Sarna gave up his 35-year career as a management consultant and technologist. Since then, he has been mostly bedridden. During energetic hours he takes to his laptop, reading news about Israel, posting on Twitter and writing books.
When I met him at his home in Teaneck, New Jersey, in January, he told me, “I believe that as long as I’m fighting, I’m likely to persevere, and if I give up, I just won’t make it.”
In July, after Sarna’s kidney function became dangerously low, he registered with a regional transplantation center and was placed on the national registry for a kidney. The average wait time in New Jersey is about four-and-a-half years.
When kidneys can no longer sustain life, dialysis is the only option. Sarna was faced with the prospect of sitting for four hours at a time, three times a week, while a machine cleansed his blood.
Dialysis is mentally and physically draining. It can exacerbate diabetes and cause brittle bones. It also raises the level of antibodies in a person’s blood, making the process of finding a suitable kidney for transplantation more difficult. The average lifespan of a person on dialysis is five to 10 years.
Sarna’s nephrologist tried to keep him off dialysis, but time was running out. At any moment, his kidney function could drop so low that dialysis was the only option.
Sarna’s only other option was to find a live donor.
Although most people are born with two healthy kidneys, you need only one kidney to live. Sarna knew that his chances of finding a live donor were slim.
That’s when people started urging Sarna to sign up with Renewal, an ultra-Orthodox charity that specializes in live kidney donation. Although 90% of Renewal’s donors are ultra-Orthodox, about half their recipients are people like Sarna, who come from the broader Jewish community.
The average wait time for a kidney through Renewal is six to nine months.
Because many ultra-Orthodox rabbis believe that organ donation from dead bodies is against Jewish law, Renewal focuses solely on live donors. That puts Renewal’s donors in an extremely rare group of several hundred Americans who, each year, donate their kidney altruistically to a stranger.
Organs from live donors are particularly sought after by kidney patients because they last twice as long as kidneys from deceased donors.
Renewal’s ultra-Orthodox donors are willing to give a kidney to the young and the old, to men and women. In most cases, the only criterion is that the recipient be Jewish.
It may seem unfair that kidney patients can jump the line simply because they are Jewish. But if an affiliation — whether by faith or by race — persuades more people to become living donors, then doctors and advocates believe it could reduce the broader transplant waiting list and save lives.
Researchers are studying Renewal’s model to see whether it can be replicated in other race- and faith-based communities. Meanwhile, one African-American transplant surgeon is setting up a group modeled on Renewal in a prominent Harlem church.
Anthony Watkins, an assistant professor of surgery at Weill Cornell Medical College, has witnessed Renewal’s work firsthand, ever since he began his transplant fellowship six years ago. “I’ve always thought that what Renewal does is spectacular and fantastic and [that] maybe this could be duplicated in other communities,” he said.
Watkins thinks that by using Renewal’s model — appealing to African Americans to help fellow African Americans — he can persuade people to donate in greater numbers. “I think once you establish a good rapport and knowledge and education… you can get altruistic donors to step forward,” Watkins said. But how many people are willing to donate a live organ to a stranger?
Each year, almost 5,000 Americans die waiting for a kidney. The number of people in need of a kidney transplant is rising at a much faster rate than the number of transplants being performed.
Because demand far outstrips supply, between 2001 and 2014, the kidney wait list doubled from 50,000 people to 100,000. In the time it takes you to read this article, three more people will have joined the line.
Michael Rees has spent his career trying to find a solution to the national kidney shortage. Rees grew up in Flint, Michigan, and went to Hope College, a small Christian liberal arts school in the state. As a medical student, Rees focused on xenotransplantation, the field of transplanting organs from animals into humans.
Rees, who is 52, acknowledges that many experts believe xenotransplantation to be a pipe dream. He likes to quote Norman Shumway, a pioneer of heart transplantation, who said that “xenotransplantation is the future of transplantation and always will be.”
Rees is still a believer, but he acknowledges that the future remains a long way off.
Soon after joining The University of Toledo, in Ohio, as a kidney transplant surgeon in 1999, he shifted his efforts toward living donation.
Rees was a pioneer in paired donation, in which two donors whose desired recipients are not compatible with them swap recipients in order to save the life of their respective loved ones. In 2006 Rees founded the Alliance for Paired Donation, which matches donors and recipients using an algorithm co-developed by the Nobel Prize-winning economist Alvin Roth.
Rees also helped create the concept of extended altruistic donor chains. Such chains involve one altruistic donor giving his or her kidney to a stranger who has a willing but incompatible donor. That stymied donor then pays the kidney forward to another patient with a willing but incompatible donor.
This sets in motion a succession of transplants involving similar pairs. In 2009, one such donor started a chain that resulted in 30 kidney transplants.
Although Rees is in awe of Renewal’s success, his one criticism is that Renewal’s donors are not willing to give outside the community.
Rees was invited to speak at a Renewal event in the Williamsburg section of Brooklyn last year. He told me that he tried to impress upon the audience that if an Orthodox person donated outside his or her faith — in effect, offering the donor’s kidney to any transplant center that needed it — that person could start a chain that would multiply the mitzvah, or good deed, many times over. “They saw the mathematical beauty of that, but they have yet to apply it,” Rees said.
Rees’s criticism of Renewal is dwarfed by his admiration for what the group has achieved.
Renewal facilitates an average of about 50 kidney transplants a year. About three-quarters of those transplants are ultra-Orthodox donors giving to a Jewish stranger.
Ultra-Orthodox Jews account for just 0.2% of America’s population. Yet last year, by the Forward’s estimates, they accounted for up to 17% of the people who donated a kidney to strangers.
Rees realized that if Renewal’s model of communally focused organ donation could be extrapolated to the general population, it could create tens of thousands of additional kidney donors. The waiting list could be reduced to zero. “That’s what Renewal has achieved,” Rees said, “and that is nothing short of amazing.”
Rees contacted Duke University to see if researchers there could investigate whether Renewal’s model could be replicated in Christian communities.
Last year, two Duke professors, David Toole and Kim Krawiec, put together an interdisciplinary team of faculty and students, including lawyers, physicians, sociologists and theologians, to examine new methods of increasing living kidney donation. So far they have secured $70,000 in funding.
The Duke panel was particularly interested to see whether Renewal’s model could be replicated in African-American churches. Toole, an associate professor of the practice of divinity, ethics and global health, said, “African-American communities lose, lose and lose when it comes to kidney disease.”
African Americans have a higherthan-average incidence of kidney disease, but they don’t respond as well as other groups to treatment. They are among the demographics with the lowest kidney donation rates, and they also have a lower-than-average success rate with transplants.
Last November, Toole invited Renewal’s founder and chairman, Mendy Reiner, to a roundtable discussion at Duke to speak about Renewal. Reiner is 38 and grew up in the heavily Orthodox enclave of Borough Park in Brooklyn. He has small black eyes, a neat black beard and a gentle voice.
Reiner founded Renewal after an experience he had helping secure a kidney for a stranger. Reiner met the man by chance in a doctor’s office. At first, Reiner thought the man, who had swollen eyes and limbs, was looking for a handout. Reiner offered him money, but the man refused. He told Reiner that what he needed was a kidney.
Reiner placed an advertisement in an ultra-Orthodox newspaper — “Father of 5, blood type O, needs a kidney” — and included his own cell phone number. He said he received dozens of responses, both from people offering to help and from people asking for help locating a kidney for their own relatives.
Reiner founded Renewal in 2006. In its first year, Renewal facilitated two transplants. The next year it facilitated eight transplants. Soon it was facilitating 20 transplants, then 30, then 40. During the past three years, according to the group’s figures, which cannot be independently verified, Renewal facilitated an average of 50 transplants per year.
Reiner says that Renewal is open to all recipients, including non-Jews. But it is best known as an ultra-Orthodox charity for Orthodox Jews. When asked, Reiner said he had not himself donated a kidney after undergoing tests and being told he was not medically capable.
Renewal leads donors and recipients through every stage of the transplant process. It is particularly important for kidney donors, who receive very little financial support from insurance companies and the state. Renewal covers lost wages, transportation and any necessary hotel costs. It also offers domestic support such as house cleaning, laundry services and catering. Reiner said that the average cost of a transplant, including the group’s administrative overhead, is about $20,000.
According to Renewal’s most recent publicly filed tax return, the group raised $800,000 in 2013. Major donors include the Gindi family, who own the Century 21 department stores in New York City, and the Herzog family, who own Royal Wine Corp. and Kedem Foods, in New Jersey.
Mordy Herzog, executive vice president of Royal Wine and Kedem, has known Reiner since the two attended school together in Boro Park. Herzog has contributed to Renewal since its earliest years, but his view of the group changed substantially when one of his employees needed a kidney several years ago.
“I said, ‘Let me put Mendy’s dream to the test,’” Herzog said.
Three to six months later, Herzog’s employee received a kidney.
“I thought, ‘This is real. This is not a joke,’” Herzog said.
What struck Herzog most was the ability to save a person’s life. “To me, that’s like partnering with God,” Herzog said. “God creates humans, and we have the opportunity to extend people’s life. It’s giving people 10, 20, 30 years.”
Typically, a person who comes to Renewal in need of a kidney is assigned an identification code and a special email address. The person is encouraged to send out a donation request via his or her own social network, such as a synagogue, yeshiva or workplace. Renewal also organizes awareness events in local synagogues and community centers, and it places ads in ultra-Orthodox and Modern Orthodox newspapers.
Such ads are ubiquitous today. Past ads include, “A young man from Israel who volunteered in the [Israeli army] is suffering on dialysis”; and, “Heimishe woman in desperate need of a kidney.” People who are interested in donating their kidney contact Renewal, quoting the identification code for the person to whom they wish to donate. Often they will find they are not compatible with their desired recipient, but Renewal can offer an alternative recipient if the person still wishes to help a kidney patient.
Every Renewal donor has a different reason for wanting to give his or her kidney to a stranger. Some are so moved by the emotional pull of a particular person’s story that they feel compelled to help. Others speak of having a long-held desire to donate their kidney to anyone who needs it.
Blimi Brull donated her kidney last year. Brull is a 32-year-old mother of three from the ultra-Orthodox enclave of New Square, New York, about 30 miles north of New York City. She told me that she first got the urge to donate her kidney more than 10 years ago, when her mother told her about a neighbor who had kidney disease. Brull thought, “Maybe I can donate my kidney.”
Brull was newly married at the time. She put off her desire to donate while she concentrated on starting a family. But she always noticed the ads in ultra-Orthodox newspapers seeking kidney donors. For Brull, every ad represented “people who are going to lose their lives because there’s something we can do to help them and we are not doing it.”
Last year, Brull noticed a Renewal ad asking for general volunteers. Brull is a phlebotomist — a person trained to draw blood. She offered to help draw blood at a drive in Monsey, a heavily Orthodox village close to New Square. Renewal was testing people to see if they were compatible with the charity’s growing list of more than 200 people in need of a kidney. While Brull was there, she had someone draw her own blood. A few days later she got a call from Renewal, asking if she wanted to be a donor.
Brull’s husband was wary. The couple’s main concern was who would look after their children during and after the operation. Because most donations are done using keyhole surgery, the recovery time is fast. Even so, Brull knew that she would not be back to full strength for several weeks.
Renewal told Brull they would take care of everything. During Brull’s hospital stay and her recuperation at home, the charity would pay for a baby sitter to look after her children and would have meals delivered to her home. Renewal staff would also accompany her on all her visits to New York Presbyterian/Weill Cornell Medical Center.
Renewal’s kidney donors learn only vague details about their recipient, such as their age, gender and family status. Brull said she knew that she could never choose between a child with a full life ahead and a parent or grandparent with children of his or her own. She told Renewal to give her kidney to the first person who was a good match. Because she was dealing with Renewal, she said that the fact that the recipient was Jewish “was a given.”
When I asked Brull why it was important to her that the recipient was Jewish, she paused. It seemed to be the first time she had pondered the question and it troubled her. “I feel bad,” Brull said. “because a person is a person.” She thought about it for a moment. “I think I would donate to anyone,” she said, “I really would.”
The first recipient Renewal found for Brull, a man, fell ill during the early stages of the pre-transplant testing process. Brull was told it would take four months for him to recuperate and that the process would have to start over. Did she want to wait or move on to someone else?
Brull agonized over the decision. Then she called Renewal back. “I guess he’s going to get his kidney when his time comes,” Brull said, “but I guess we can go ahead to the next person on the list.”
Brull had to wait several months before Renewal found a match for her. During that time, she turned down the option of donating to a young single man whom Renewal described as having mental or emotional problems. Brull felt dubious about his prospects for getting married and having children — something that was important for her.
Eventually, Renewal matched her with a 60-year-old pediatrician who was a father of three and a grandfather of one. Brull thought: “Okay, he has three kids and he even has a grandchild. I’m not only saving a man’s life, I’m saving a husband’s life, I’m saving a father’s life and I’m saving a grandfather’s life. That made it so much more special, actually.”
Renewal claims to facilitate about 30% of altruistic donations in the United States. But that is not strictly true.
The United Network for Organ Sharing, which tracks donations nationally, counts a kidney donation as “altruistic” only if the donor does not specify to whom the kidney is given. Last year it tracked 180 such altruistic donations.
Because Renewal’s donors choose the recipient of their kidney — even though they have no personal relationship with them — UNOS categorizes them in a larger pool of 1,273 living donors who directed their kidney to a “non-relative.”
Based on this method, Renewal’s donors account for about 2% or 3% of living donations to non-family members.
But Duke University’s Toole says that it is unfair to compare Renewal’s donors to most other donors in this larger pool because most of those donors know the recipient of their kidney. Renewal’s donors give to strangers. “What makes the model so interesting,” Toole said, is that “it’s some in-between space” between directed donations and altruistic donations.
At the Duke roundtable meeting last November, Toole’s panel members were impressed by Reiner’s description of Renewal’s work. But two representatives of large churches, who were also invited to the panel, were less optimistic, Toole recalled.
Toole said that Ben Snyder, regional campus director of the nondenominational CedarCreek Church, in Ohio, felt that his congregants had so many other desperate concerns that live kidney donation would likely be pushed well down the list.
The Rev. Kenneth Robinson, pastor of a 1,700-strong African-American congregation in Memphis, Tennessee, had even greater misgivings.
Robinson, 60, is a medical doctor and a former commissioner of health for Tennessee. He said that as lofty as Renewal’s achievements were, he would struggle to achieve anything approaching a similar level of success among his congregants.
Robinson pointed out that the African-American community has a deep mistrust of the medical system that would make people very cautious about live donation. Historically, the medical community has treated African Americans badly, and at times abusively. One of the most egregious cases was the Tuskegee Study, a 40-year Public Health Service project that ended in 1972, in which hundreds of unwitting African-American men were monitored to see what would happen if their syphilis went untreated. Recentstudies have shown that because of racial bias, African Americans today suffer from substandard medical care.
Robinson said that in the African-American community, he would have more success increasing donation after death than he would have persuading people to become live donors. He pointed out that because so many African Americans die abruptly while their organs are still healthy, in suicides, car accidents and shootings, many of them would make viable donors.
Toole recalled: “Of all the moments of the day, that was the moment I think where everybody’s jaw dropped. It really changed the conversation from, ‘How do we get more living donors?’ to ‘What are we missing here?’”
Despite Robinson’s pessimism, the Duke team has not given up on the Renewal template. The team will launch several research projects this year, one of which will focus on Renewal “as an innovative model of living kidney donation.”
Cornell’s Watkins is also upbeat.
Watkins is well aware of the mistrust in the African-American community toward doctors. But he believes that if his church in the Harlem section of New York can educate people about living donation in a “culturally sensitive way,” more people will be persuaded to become donors.
Watkins believes the greater challenge lies not in mistrust, but in the fact that the African-American community is more diverse than the Orthodox Jewish community. “Even more importantly than religious diversity are the challenges that exist in our community,” Watkins sighs. “I don’t know how to word it, but the community is not as tight-knit.”
Many outsiders look down on the ultra-Orthodox community. They mistrust its insularity, its rejection of modernity, its adherence to rules and laws that seem at odds with secular society. But it may very well be the strong sense of community and the veneration of Jewish law that drive ultra-Orthodox donors to give in such numbers.
Most ultra-Orthodox rabbis opposed live donation in the decades after it was pioneered in the 1950s. But as the procedure became safer and more routine, rabbinic opinion changed. During the 1980s, the Sephardic chief rabbi of Israel, Ovadia Yosef, said the risk was not significant enough to prohibit donation. Today, although rabbis do not believe that living donation is obligatory, many
Renewal has facilitated a transplant to just one non-Jew so far.
rabbis view it as “an extraordinary mitzvah,” according to an article in the Orthodox Union’s magazine, Jewish Action. Renewal’s literature and its website tout “the great mitzvah of saving the life of a fellow Jew.”
Berish Korn, an ultra-Orthodox father of seven who donated his kidney to a 14-year-old girl through Renewal last year, told me: “It’s the highest, highest thing someone could do in his life. Even if you give someone a million dollars, it’s not like giving a kidney.”
As with any successful organization, Renewal has a growth problem. Its recipient list is growing, but its donor pool remains heavily concentrated in the ultra-Orthodox community. Now it is expanding into more liberal streams of Judaism.
Reiner said his early appeals for Modern Orthodox donors failed. He told me that ultra-Orthodox donors decide quicker and trust medical literature faster, while Modern Orthodox donors are more cautious and probing.
Reiner realized that he needed someone who better understood the Modern Orthodox world. Last fall he hired Josh Sturm, a Modern Orthodox rabbi, as an outreach director.
Sturm’s job is to broaden Renewal’s donor base within the Modern Orthodox community and beyond into the Conservative and Reform movements. In recent months, Renewal has asked synagogues in Teaneck, home to a large Modern Orthodox community, to host awareness events at which rabbis deliver a sermon about the need for live organ donation.
One of those rabbis, Larry Rothwachs, wondered how he could preach about donation without making a donation himself. So in February he donated his kidney through Renewal to a Teaneck resident who was on dialysis. He’s one of several Modern Orthodox Jews to donate via Renewal in recent months.
Sarna is also from the Modern Orthodox community. He signed up with Renewal in September. Rather than posting an ad for Sarna, Renewal asked a prominent Modern Orthodox rabbi, Haskel Lookstein, to send an email to his congregants and the broader community, asking for help.
At least four potential donors tested for Sarna. When I spoke to Sarna by phone at the end of February, he sounded beleaguered. He’d been suffering from attacks of nausea and pain, and the cold weather had aggravated his arthritis. “Every step is difficult,” Sarna said. “It’s hard for me to focus. It’s very hard for me to have an intelligent conversation.” By the end of March, Sarna’s match had been found and a transplant date was set for April 7.
Live kidney donors have to go through a battery of tests, including from a social worker and a psychiatrist, before they are cleared for transplantation. Hospitals want to ensure not only that donors are physically and psychologically fit, but also that they have not been coerced or paid to donate their kidney.
Jews have a bad reputation when it comes to organ trafficking. Israel plays a disproportionate role in the global black market organ trade. In America, the only person ever to be convicted of brokering organs is an ultra-Orthodox Jew from New Jersey.
New York area hospitals have become used to donors coming through Renewal. Staff members understand what it means when donors cite a “mitzvah” as a motivating force behind their desire to donate. Marian Charlton, chief transplant coordinator at Weill Cornell Medical College, said many Renewal donors have been motivated by hearing the stories of, or knowing, other donors. “Most of them will say: ‘It’s a mitzvah and why should I not help another individual? I would want someone to help me if it was reversed.’”
Charlton, who has worked at Cornell for 27 years, said Renewal donors are more educated about the living donor process than most other live kidney donors who come to Cornell. “I do wish other communities would follow suit and take note of what they’re doing and take the lead in their communities,” she said. “But there are no other organizations that compare.”
Reiner was nervous that this story would portray Renewal as purely for the ultra-Orthodox or purely for Jews. He stressed that Renewal is growing into a much broader organization. “If tomorrow an African-American recipient walks through the door, we will create a marketing package for that recipient,” he said.
Reiner concedes that out of more than 260 transplants so far, Renewal has transplanted just one non-Jewish recipient.
In that case, an ultra-Orthodox woman had only a limited time to donate her kidney. She did not match the person on Renewal’s list so she asked that Saint Barnabas Medical Center give her kidney to the first good match on its list.
But Reiner also recognizes that as an ultra-Orthodox Jew, he would struggle to bring his message to a secular audience.
Reiner said he has met with Watkins to discuss the Harlem church initiative. He has offered the Harlem group advice, administrative support and, if necessary, help with startup costs. “But we can’t be the foot soldiers,” Reiner said.
He explained that African Americans won’t listen to him preach about live kidney donation, in much the same way that Reform Jews would not listen to him. “I can’t get up in a Reform temple and talk about kidney donation,” Reiner said. “We look and speak differently and are totally worlds apart. The same thing goes for the non-Jewish world.”
In essence, Reiner is arguing that people will go to extraordinary lengths to help their fellow man or woman. They will donate a piece of their body to save a life; they just need to feel a connection and be given a reason to do it.
When I visited Sarna at Weill Cornell Medical Center the day after his transplant, he looked healthier than he looked in February. His face had more color. He was upbeat and smiling.
I asked Sarna whether he had considered what it takes to be a donor and whether he had thought about being a donor himself. Sarna replied that he would like to think he is the type of person who would donate, but he can’t say for sure. He added, “It’s a level of selflessness which is mind-boggling, really.”