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Tireless in his advocacy, and on the dance floor, surgeon Dorry Segev is on a mission to make organs more widely available for those who desperately need them.
Photo by Howard Korn
The Brains Behind HOPE
What does it take to get a bill passed? Here’s how Dorry Segev and his mentee, Brian Boyarsky, successfully pushed to reverse the law banning use of HIV-positive organs for transplant—a campaign they described in a recent Annals of Surgery.
Anticipate questions, provide answers—and contact the press.
Congressional legislative assistants (LAs) advise their members on what proposed legislation they should support. LAs need to know how many lives the measure will save, how much it will cost taxpayers and the political benefit-to-risk ratio for their bosses’ constituents.
Segev’s research estimates that using HIV-positive organs will save about 1,000 lives annually and also produce savings for Medicare. And the humanistic benefits are priceless—as captured in a front-page New York Times article on April 11, 2011. This top-tier coverage generated considerable publicity and support for Segev’s cause.
Assemble a community of advocates.
Soon after this Johns Hopkins research was published, every major AIDS and transplant organization officially supported the campaign. The Johns Hopkins team also got the backing of the entire medical community, including general medical organizations like the American Medical Association. In his journal article, Segev lists 39 influential groups that supported the HOPE Act.
Obtain broad bipartisan support.
It was not surprising that Barbara Boxer, a Democratic senator from California, agreed to sponsor the bill in the Senate. However, so did Tom Coburn, a conservative Republican from Oklahoma who happens to be a physician. To help persuade Coburn, the Johns Hopkins team enlisted Alan Hawxby, a transplant surgeon at the University of Oklahoma who trained at Johns Hopkins.
“His [Coburn’s] support was a major victory for our effort,” Segev and Boyarsky write. “Once legislators saw two champions with such drastically different political ideologies, they were convinced that HIV to HIV transplantation was an issue that need not be argued along party lines.”
In the U.S. House, Democrat Lois Capps, a former school nurse, joined with Republican Andy Harris, a Johns Hopkins anesthesiologist, to sponsor the legislation.
Between 2011 and 2012, Segev and Boyarsky conducted marathon visits to Capitol Hill, covering up to 10 offices a day with 10- to 15-minute meetings.
Then they organized a Congressional briefing, moderated by an ABC News journalist, that attracted more than 100 legislative assistants, who heard evidence presented by physicians and a “particularly eloquent” HIV-positive kidney recipient.
By the time the HOPE Act was introduced in the Senate on Feb. 14, 2013, most health legislative aides and their bosses were ready to support it. Nine months later, it passed both committees and chambers unanimously.
Dorry Segev ’96 is in his element:
Facing a row of television cameras at a hastily assembled press conference, the Johns Hopkins transplant surgeon is telling the world about a historic milestone.
It is March 30, 2016: Johns Hopkins surgeons have transplanted the nation’s first HIV-positive organs—a liver and a kidney from a deceased donor—into two patients who are already living with HIV. The patients are doing well, Segev tells the journalists gathered in Turner Auditorium. These accomplishments were possible because of his leadership, research and advocacy.
It’s another step toward recovering more lifesaving organs for roughly 122,000 Americans on transplant waiting lists. On average, 22 people die every day as they wait for an organ that can take years to obtain. And for thousands of those with HIV, the clock is ticking faster.
“We were throwing away organs from donors infected with HIV simply because they were infected with HIV,” Segev says. “These were potentially perfectly good organs for these patients.”
Stopping such waste required reversing a 1988 federal law forbidding use of HIV-infected organs for transplant. At that time, the virus that causes AIDS was poorly understood and almost always fatal. Since then, thanks to antiretroviral therapy, HIV has become a chronic disease. Those infected are living long enough for their livers and kidneys to fail. And studies had shown that those with HIV fare about as well with transplanted (HIV-negative) organs as those without the virus.
Segev set out to change the antiquated rule by producing scientific evidence about the benefits of HIV-positive transplants. His research, published in the American Journal of Transplantation in 2011, demonstrated that if 300 to 500 people with HIV became organ donors, they could provide as many as 1,000 transplants for HIV-positive recipients.
The study rallied broad support from the medical establishment, the transplant community and HIV activists, like the HIV Medicine Association. After receiving coverage from The New York Times and other media, the initiative finally gained the attention, and approval, of Capitol Hill as well.
Segev spent three years helping to draft and push through the HIV Organ Policy Equity (HOPE) Act (see sidebar, p. 28) using skills he had begun developing as a young school of medicine faculty member, when he had a policy fellowship in Washington. “I learned how you can take an idea, concept or problem and move it from people griping about it clinically to a policy that’s actually being proposed and passed,” he says.
In 2013, HOPE became one of only 57 bills to survive the most unproductive Congress in the history of the United States. And in 2016, The Johns Hopkins Hospital became the first in the nation to perform the HIV-positive transplants. Surgeons Niraj Desai and Andrew Cameron led the teams on the kidney and the liver, respectively.
“This is only the beginning,” Segev tells those assembled for the press conference. “We’re teaching transplant centers across the country the protocol and safety measures so that HIV-positive to HIV-positive transplants can take place across the states.”
He underscores how HOPE also affects all who are living with HIV—1.2 million Americans, according to the Centers for Disease Control and Prevention—because they are now permitted to become organ donors.
“To be told that your organs will be as valuable after death as anyone else’s is huge. It’s not just destigmatizing but also allows people with HIV to leave a living legacy,” he says. “This is really a celebration of how far we’ve come in 30 years of dealing with this once devastating, now chronic, disease.”
As he and his Johns Hopkins colleagues answer questions about the transplants and their implications, the bank of cameras records them. Before long, the photos are all over the web, along with the scores of other images and videos of the 45-year-old Segev.
When you Google Dorry Segev, you discover a surprising gallery: He’s twirling his wife and research collaborator, Sommer Gentry, at a national Lindy Hop competition. He’s lifting Pamela Paulk, president of Johns Hopkins Medicine International, to win first place at Johns Hopkins’ Dancing with the Stars, a United Way fundraiser. He’s rapping “Baby Got Stats,” a YouTube parody with 42,000 hits made famous by the Freakonomics blog. He’s performing a “dueling pianos” version of Chopin’s “Grand Polonaise” in tribute to his childhood hero, the late comedian and pianist Victor Borge.
He’s in the OR at Johns Hopkins, transplanting a kidney. He and Gentry are appearing in in Time magazine for finding a better way to match kidney donors with patients. He’s speaking at the national organ transplant center in Nepal, where he performed the country’s first laparoscopic donor nephrectomy. He’s holding up the New York Times: The front-page story from April 11, 2011, shows how his research is advancing the lifesaving benefits of using HIV-positive organs.
The shaggy-haired Segev is the first to say that he has had lots of help. Now associate vice chair in the Department of Surgery, Segev directs the Epidemiology Research Group in Organ Transplantation, a 70-member team he founded here 10 years ago. His team uses advanced statistical methods and large database analyses to study outcomes, disparities and allocation policy in organ transplantation. Currently, the group has roughly 20 multiyear National Institutes of Health studies underway, as well as “maybe 100 other studies” designed for journal abstracts or manuscripts.
“I don’t know of anyone in the transplant world who has been as successful in getting people to participate in his research interests,” says John Roberts, chief of the Division of Transplant Surgery at the University of California, San Francisco. “When it comes to the public policy aspects of transplantation, there’s no one else who has done what he’s done. Ever.”
Over the years, Segev has published more than 300 peer-reviewed research articles. His mentees and collaborators hold posts in transplant medicine departments across the nation. And he still sees patients, although he doesn’t have nearly as much time for surgery as he used to.
Colleagues describe him as high energy, organized, passionate—and intense.
“Dorry makes academic medicine feel like an extreme sport, like skydiving,” says Johns Hopkins infectious diseases specialist Christine Durand. “There’s always an adrenaline rush.”
Spending time with Segev provides a glimpse into how this physician-scientist/change agent/performer emerged from an unconventional childhood.
Born in Haifa, Israel, the oldest of three sons, Segev was raised in Illinois, Ohio, New Jersey and Texas before he moved to Maryland to attend the Johns Hopkins University School of Medicine. His father worked as a chemical engineer. His mother, a math teacher, eventually went to work in computer programming. Dorry was a gifted pianist who composed classical music when he was 8.
He was also something of a computer whiz kid. In high school, he created software, DocAid, for a medical office software company he started with his father. The product did so well that it helped pay for his undergraduate studies at Rice University. Segev chose to major in computer science and electrical engineering, with a minor in music composition.
By the time he arrived at Johns Hopkins in 1992, he had written a children’s musical based on “The Three Little Pigs,” released a nationally distributed record with a techno band—and had spent years writing code. He possessed the broad talents that Johns Hopkins finds appealing.
“It’s only because Dorry has this interest in computer science that he was able to turn his career into, ‘I’m the epidemiologist who can really bring new methods to change the field of transplant,’” points out Gentry.
Gentry received her doctorate in electrical engineering and computer science from MIT and teaches operations research, a form of applied mathematics, at the U.S. Naval Academy. She is also a research associate at Johns Hopkins, where she’s participated in valuable collaborations with Segev.
The couple first worked on creating a system for national kidney paired donation. It involves matching a patient who has a willing but incompatible donor with another pair who has a similar dilemma. A difficult enough task to pull off locally, the problem on a national level was enormous: How do you get that much patient information together? And how do you make sure your decisions are the best for the patient?
“Operations research is the math of making better decisions,” Gentry says. “Dorry knew immediately that was the kind of problem that an operations researcher solved. So he brought it to me.”
Together, the couple tackled the problem over spaghetti dinners, en route to dance competitions and late into the night. “I remember getting so excited about it that we had to say, ‘OK, OK, we can’t talk about this project anymore—we have to go to sleep now!’” Gentry recalls.
Their paper was published in JAMA in 2005, when Segev was 34 and Gentry was 27. Soon, their work commanded a full-page article in Time, with additional stories in The New York Times and The Wall Street Journal.
Two years later, as a result of their findings and Segev’s advocacy, the Charlie W. Norwood Living Organ Donation Act was passed. Their kidney paired donation equation is now also used in Canada and Great Britain.
Since their landmark paper, more than 5,000 people have received a transplant through paired donation, which now comprises almost 20 percent of all live donor kidney transplants in the United States.
Clearly, Dorry Segev is a man who loves taking on challenges. Choosing medicine over computer science meant plunging into a demanding new field where he could have an impact on individual human lives. Surgery brought another way to refine his “hands-on” skills. Developing his surgical technique seemed a natural extension of his hours at the piano.
In 2013, when he created a new course in advanced statistical programming at Johns Hopkins’ Bloomberg School of Public Health, it quickly became the school’s most popular elective.
“Dorry will decide that he wants to do something, and he absolutely makes himself good at it,” his wife observes.
Take, for instance, his mastery of the Lindy Hop street dance. The couple met in 1999 at the American Lindy Hop Championships and soon became award-winning dance partners. Placing four times in the American championships, they were United Kingdom champions in 2002 when they were living there as part of a residency exchange program.
In 2005, with the help of Segev’s promotional skills, they created Charm City Swing in Baltimore and began introducing thousands of others to the art form. In 2011, they helped open Mobtown Ballroom, a 3,000-square-foot dance space in a renovated church in Baltimore’s Pigtown.
Today, the couple lives in Canton with a cat, Reese, and a 20-by-20-foot dance studio. Married since 2003, they do not own a television set and only recently purchased their first couch so that Segev could more easily play his guitar. Along with ongoing discussions of research, their domestic life features regular “house jams” with Segev on piano and guitar and as many as 30 friends performing tunes from the Beatles, musical theater and more.
In recent years, as the couple has worked together on problems such as eliminating disparities in organ allocation, they have taken up slalom-course water skiing and acroyoga, a form of partnered acrobatics. Segev is also exploring how to advance his photography by using a drone.
“Common training in science and medicine can involve an attitude that if you’re not working 24 hours a day, you’re not working to your potential,” Segev observes. “I feel that means that you’re not letting your mind rekindle its creative energy. If you’re involved in creative pursuits, that energy will also impact your scientific pursuits.
“My purpose in living is to make the world a better place—either through contribution to the arts or to science, or through taking care of patients, or by teaching people to dive deep into their loves and passions.”
Segev’s quite good at that, according to the folks who work with him. He’s a much-beloved mentor who, as one researcher puts it, can “dream bigger for me than I can.”
Roberts of UCSF notes that Segev frequently “puts a young person as a first author in a prominent role. People say, ‘Gosh, I get to work with this genius who is enthusiastic and energetic and who is not relegating me to some minor role, but making me prominent? That’s a guy I want to work for.’”
One of the best examples, perhaps, is Brian Boyarsky, who is entering his last year of medical school at Rutgers. In 2010, when Boyarsky sought out Segev’s advice, he was newly graduated from The Johns Hopkins University. Having just studied best transplant practices in different countries, he was looking for an engaging project before he started med school.
“I said, ‘Something that has been irritating me for a really long time is that we can’t use HIV-positive organs. Do you want to help me take on Congress?’” Segev recalls. “So I got to watch this kid who had just graduated from college go down the halls of Capitol Hill, get a bill passed and meet President Obama (see sidebar). There’s no better pride as a mentor.”
Last March, Boyarsky attended the HIV-positive transplant press conference at Johns Hopkins. “I felt extraordinarily happy that our very hard work actually saved lives,” he says. “It solidified in my mind how powerful research can be in influencing public policy, and then clinical practice.”
Does Segev anticipate another trip to Capitol Hill?
“The next big policy step is to improve how we treat people who have donated kidneys,” he says. “I don’t have an exact sense yet of what the congressional ask will be, but right now we know that living donors sometimes have a hard time getting life insurance or even health insurance. We don’t nearly cover the expenses of donating a kidney, and we don’t follow donors long term.”
Meanwhile, he’s looking into how to define and reduce the disparities in how organs are allocated throughout the country. Other research underway includes learning as much as possible about the virology of HIV-positive organs.
At the American Transplant Congress in May, Segev and team presented 40 oral abstracts, more than any other group in the world. But that’s not all that made the Johns Hopkins group memorable.
“We also won the talent contest,” Segev reports. “There was a talent competition at the conference, and my whole group entered as a dance ensemble. We taught them to do a little swing dance routine. They did it beautifully.”
Karen Nitkin contributed to this article.
“Dorry is very good at clarifying what people are good at and helping put them in a situation where they can succeed. If you’re working with him, you’re going to be successful, and it creates this environment of excitement.”
—Jayme Locke, surgical director of the Incompatible Kidney Transplant Program at University of Alabama at Birmingham Hospital and coordinator of the UAB Kidney Chain, which is now the longest kidney-transplant chain in the United States, with 66 living donors and recipients. (She is a former fellow at Johns Hopkins)
“He has very high emotional as well as intellectual intelligence quotients, and he combines these to bring out the best in those who are fortunate enough to work with him. Science is passion, and for those of us who live and breathe our work, science is very personal. I am a much better clinical scientist because of the opportunities I have had to work with Dorry.”
—Krista Lentine, professor of medicine, medical director of Living Donation, Saint Louis University.
“He’s able to keep many projects moving forward at great speed. Although he’s much more driven by the big picture, he’s able to keep very much in touch with the detailed nuances of what’s going on.”
—Niraj Desai, Johns Hopkins transplant surgeon who performed the nation’s first HIV positive to HIV positive kidney transplant