Liz Parrish Wants to Live Forever
In 2015, in a secret medical procedure carried out in Bogota, Colombia, the 44-year-old woman got dozens of experimental gene-therapy injections. Why? Because Parrish, the creator of a longevity company called BioViva, believes that science is on the cusp of delivering radically longer lifespans—and she wants to help bring on the revolution.
She flew down early on a Monday without telling her husband or kids where she was going or what she was doing. By the time she landed in Bogotá it was late. The sky was hazy and dark, the air surprisingly cool, the roads crowded and chaotic.
Her hosts had prepared a bed at their apartment, but she couldn’t really sleep. The two gene therapies she would receive the next day—contained in dozens of vials packed in dry ice—had just arrived from the U.S., and everyone stayed up late talking about how they could change the course of history. When they drove her to the clinic on Tuesday morning, she stared through the window and tried to tune out the world, and then she hunched over her phone and texted her kids: “I love you.” Few people involved in the experiment, if any, even knew she was a mother.
In studies she’d read and videos she’d seen, mice that had received the treatment she was about to get were reborn, their fur glistening, their muscles newly taut. The change was almost immediate—a matter of days, weeks.
But lab mice are different than people. She knew that countless drugs that work on them do nothing for us. “I was hoping for magic,” she says. “Of course I was.” She imagined the needles piercing her skin, the clock suddenly spinning in reverse, the ravages of time and weather and hardship visibly undone. She thought about what all this could mean someday, for her and everyone else: the end of death.
The room at the clinic was clean and spare. There was a bed and, on her right, an IV drip, and there was a changing area where she slipped into a white gown with a blue pattern of atomic particles. In a video of the procedure that she agreed to show me almost three years later, her long hair spilled over the pillow as she lay down. She tried to lighten the mood by telling jokes, the same thing she’d done during the births of her two children. The others in the room—a doctor, a nurse, and two men with video cameras—chuckled. Then they started putting in the needles.
Over a period that lasted well into the night, there would be more than 100 injections, in her triceps and thighs and buttocks and even her face, just below the cheek. The pace was agonizingly slow. “So you’re saying this will still get to my organs, right?” she asked the doctor as he inserted a needle below her kneecap. It would, he assured her.
Some of the vials were still frozen, and the doctor pulled them out one by one, cradling them in his hands until they thawed. “Ready for this?” he asked as she rolled over to expose her shoulder blades. She hugged a pillow. “Hurry up,” she laughed. “I can’t wait to get this done.”
It was after midnight when she got the last injection. She was hungry and out of jokes and unsure of what would come next. It was September 16, 2015, and a strange kind of medical history had been made: in an untested procedure that would have violated federal regulations in the U.S., Elizabeth Parrish, a healthy 44-year-old from Bainbridge Island, Washington, the founder of a small biotech startup called BioViva, had received what she believed was a more potent dose of gene therapy than any other person ever had. She did it to fight what she called the “disease” of aging. She was, in her own words, Patient Zero in the quest for radically increased longevity.
Two days later, after monitoring her for fever or vomiting, the doctor decided she was safe to fly. Parrish, who is tall and blond, of Scandinavian descent, wore a surgical mask to the airport and went home. Even then she didn’t tell her family what she’d done, letting them believe that it was just another trip for her new business. “I didn’t want my husband to be stressed out, and I didn’t want him to stress me out,” she says. “I just needed everything to be normal.” When I asked later if I could interview her husband, she requested that I not. “I would really like to keep my family out of it,” she said. It was part of a pattern: She preferred that I never come to her home, so we talked on the phone or met in nearby coffee shops. She asked that I schedule interviews through BioViva’s satellite office in London. She wasn’t particularly used to people paying attention to her—and now, after she’d genetically modified herself, they did more than ever. The scrutiny made her uncomfortable.
Two weeks after Bogotá, when Parrish’s company issued a press release about the experiment, it didn’t let on that she was the guinea pig. “BioViva Treats First Patient with Gene Therapy to Reverse Aging,” the release said. “The subject is doing well and has resumed regular activities.” She did her best to do just that. She read books and wrote e-mails and did laundry and made dinner and walked the dog in the woods and took her kids to school. She didn’t exercise much—no more than usual, less than doctors might recommend. She kept a journal. She looked in the mirror. She waited for something to happen. Every day for months she took a photo of her face, but if there were any changes, she couldn’t see them.
Until one drizzly morning in January 2013, less than three years before she became Patient Zero, Parrish was “mostly normal,” she told me, just an ordinary mom and a part-time working housewife. That day she dropped her husband off at the Bainbridge Island ferry terminal, across the bay from Seattle. Then she took her nine-year-old son to a doctor’s appointment. The boy had been getting up a lot at night to go to the bathroom, and she and her husband noticed that he kept getting thinner. At the clinic, a doctor checked his blood, checked his urine, and then looked at Parrish with a grave expression. “You have to go straight to the emergency room,” he said. “He has Type 1 diabetes.” Type 1, once known as juvenile diabetes, is a chronic condition in which the pancreas fails to produce insulin, the hormone that allows sugar to enter cells and supply energy. For a child to remain alive and healthy, the new reality is a life of carefully managed blood-sugar levels and, in some cases, endless injections.
Parrish dialed her husband and handed the doctor the phone, unable to deliver the news herself. Her son begged her to let him go home. Instead they drove straight to the ferry and rode across the choppy waters of Elliott Bay, watching in a daze as downtown Seattle rose before them. Her husband was waiting near the ferry dock; together they sped to Seattle Children’s Hospital.
Things like this weren’t supposed to happen to her kids. “I was such a nervous parent,” Parrish says. Before the family’s move to forested Bainbridge Island, when the children were young and they lived in Seattle, she’d made her house the neighborhood hangout—partly so that they wouldn’t be out of sight. Soccer was allowed, but she didn’t let them try riskier activities like river rafting or climbing. And yet none of that had helped her son.
Seattle Children’s Hospital sprawls across 25 acres in the city’s wealthy north end. It’s consistently ranked among the best pediatric facilities in the U.S., and its 403 beds are filled with the nation’s neediest cases—kids with cancer, heart disease, neurological disorders, brain damage. The nurses and doctors gave Parrish and her husband a multi-day crash course in diabetes management. They assured her that her son had a manageable disease. “I can’t say enough good things about Children’s,” Parrish says. But experiencing the routines of modern American medicine also left her angry.
The press release didn’t let on that Parrish was the experiment’s guinea pig. “BioViva Treats First Patient with Gene Therapy to Reverse Aging,” it said. “The subject is doing well and has resumed regular activities.”
Even before her son’s diagnosis, Parrish had obsessively read medical news and science journals and the Facebook page I F#ing Love Science, tracking clinical studies like some people follow sports. Working with people she’d met on the internet, she had launched a nonprofit group, Stem Cell Voice, to educate the public about stem cells and ultimately push regulators to get life-changing treatments put into practice faster. Her son’s condition prompted Parrish to take a deeper look, and she became bothered by a disconnect. Science seemed to be accelerating—we’d decoded the human genome, cloned human stem cells, and started growing replacement organs—but medicine was standing still, she thought, held back by an overzealous FDA that required years of trials and hundreds of millions of dollars’ worth of R&D before new treatments were approved. Now that her son was lying in a hospital bed, the delays were personal.
“Why don’t we biobank his pancreas?” she asked her son’s nurse. She figured they could save part of it, freeze it, and wait for a future when it could be reengineered to produce insulin again. Didn’t they know what was possible now with stem cells?
“Look around,” the nurse said, trying to give Parrish some perspective. Her son would survive. Many of the surrounding beds held kids who would not. “But that was even more unacceptable,” Parrish says. “I just remember being so angry, so angry that kids were dying.”
The family went home to Bainbridge, and Parrish went into a dark place. She imagined her son dead. She imagined his funeral. She imagined her death. She tried to meditate but instead saw herself walking downstairs and finding his body, replaying the image of him being dead over and over.
Before long her son went back to school and her husband to work, and Parrish went online, channeling her sense of urgency into a hunt for cures. She traveled to medical conferences, where she stopped researchers in the halls with a question: “Can this help kids?” she asked. “How can it help kids?”
In September 2013, Parrish flew to Cambridge, England, for the sixth biennial conference of the SENS Foundation. SENS, which stands for Strategies for Engineered Negligible Senescence, is co-led by the anti-aging movement’s most recognizable face, Aubrey de Grey, a beer-loving polymath with a long, ragged beard. De Grey, who starred in a 2014 documentary called The Immortalists, has a background in computer science and biology, and he uses money he inherited, along with donations from Silicon Valley titans like Peter Thiel, to fund rigorous research into aging. The conference attracts researchers and philosophers and scientists like George Church, the famed Harvard geneticist. All the attendees are thrown together in the Queens College dorms.
Parrish, one of roughly 200 people in attendance, raced after experts when they finished their talks, peppering them with questions, discussing the future of genetics with Church—whose projects at Harvard include trying to resurrect the woolly mammoth by cloning—before she really even knew who he was. She watched presentations on calorie restriction and gene editing and tissue regeneration, and she heard speaker after speaker mention something called telomeres—tiny pieces of genetic material described as the body’s internal clock. People here were dreaming openly of an immortal future, of cures for all ailments, and when Parrish asked antiaging researchers her usual question, some seemed to say, Yes, this science could help kids. Of course it could. Curing death would help everyone. “What do you need?” she asked. They needed more money.
Money’s easy, Parrish thought. She’d helped her husband in the family’s software business, and she’d watched other tech companies bring it in. Funding this research seemed a lot more important than creating an app. Though she didn’t have the right degrees and she’d never launched a startup, she was desperate for cures. She had a mind for science. She knew she could charm people. She decided to start a company.
Without realizing it, Parrish was just ahead of Silicon Valley and its newly middle-aged billionaires, Google founders Sergey Brin and Larry Page among them. Less than two weeks after SENS 6, Google launched a life-extension unit called Calico, seeding it with a reported $1.5 billion. A year later, the hedge-fund manager Joon Yun established the $1 million Palo Alto Longevity Prize. In 2016, the Bay Area startup Ambrosia began offering parabiosis treatments—transfusions that mix the blood of older adults with blood drawn from teenagers and young adults—for $8,000 per liter. Last year, Silicon Valley’s new Longevity Fund, led by 23-year-old Laura Deming, raised a quick $22 million, and the Bay Area’s Unity Biotechnology, which aims to zap dying cells from the body before they can accumulate, completed raising a $151 million round of funding from the likes of Thiel and Amazon founder Jeff Bezos. The Valley had found a new problem to hack. If the body was a machine, death was just an engineering challenge.
A fellow conferencegoer from SENS 6 told Parrish that there was someone she really had to meet. His name was Bill Andrews. He was an ultramarathoner, a microbiologist, and a leading expert on telomeres—perhaps the only person in the antiaging world with the status of de Grey, with whom he would costar in The Immortalists. Parrish called Andrews almost as soon as she got home from Cambridge. She doesn’t remember the details of their first conversation, just that he had answers. “We really hit it off,” she told me. “We talked and talked and talked.”
For Bill Andrews, now 66, the quest began in 1962, when he was ten. He was in his front yard in Southern California, looking up at the night sky through a secondhand telescope—his Christmas gift—with an eight-inch reflector. Andrews’s father, who was tall and thoughtful like he is, had noticed his son’s intense interest in science. “He came out to the front lawn,” Andrews recalls, “and he said, ‘Bill, when you grow up, you should become a doctor and find a cure for aging. I don’t know why nobody’s done that.’ ” Andrews never forgot his father’s words. “I plan to live forever,” he writes in his new book, Telomere Lengthening. “A lot of people claim that aging is something that we can do gracefully. It’s not. Aging is one of the worst things that can happen to a person.”
Even before Andrews went to college, and well before he earned his Ph.D. in molecular biology at the University of Georgia, he had questioned the prevailing theories about aging. “Everybody used to think that we age because of exposure to the environment,” he says, the consensus being that we simply broke down “like old trucks sitting in a field.” But that didn’t seem right. Why did people living at high latitudes age at the same rate as people at the equator? Why did dogs and cats age at different rates?
“I thought there had to be a clock that ticks inside of us, and that’s the only way to explain aging,” he says. Andrews was in his forties by the time he heard about a concept that made sense. In 1993, at a California hotel near Lake Tahoe, he attended a talk by Calvin Harley, then the chief scientific officer of the Geron Corporation—which takes its name from gerontology, the science of aging—and listened in awe as Harley argued that repetitive DNA sequences called telomeres serve as the body’s cellular timepieces. Afterward, Andrews raced to the front of the room and asked Harley for a job. He got it.
Telomeres sit at the tips of chromosomes, inside the nuclei of human cells. Whenever a cell divides and its DNA is replicated, the telomeres become incrementally shorter, shrinking and shrinking until they’re nearly depleted and the cells can divide no more.
Telomeres and telomerase, the enzyme that lengthens them, were discovered in the late 1970s and early 1980s by scientists Elizabeth Blackburn, Carol Greider, and Jack Szostak. They made independent breakthroughs by studying pond scum and yeast cells, and their work turned out to be so consequential for other organisms that it won them a Nobel Prize in 2009.
At Geron, Andrews and his team were tasked with finding the human telomerase gene—which in theory could produce the enzyme and help replenish depleted telomeres. They looked for the telltale sequences in cancer cells, then Andrews used a computer program he had written to analyze the structures of promising candidates. In just over three months, they found the right gene: TRC3, later renamed TERC, or telomerase RNA component. A year later they discovered the crucial protein component, hTERT, or human telomerase reverse transcriptase. They began testing it in petri dishes, watching normal cells divide endlessly. They tested turning hTERT off in cancer cells, stopping the production of telomerase, killing the cancer cells by accelerating their aging. Soon Geron researchers were growing human skin from the cells of old people on the backs of lab mice, then treating the tissue with telomerase and seeing wrinkles, blisters, and age spots disappear.
In 1995, Geron published its telomerase discovery in the prestigious journal Science. It filed a raft of patent applications, some of them in partnership with the University of Colorado. The company thought it might have two breakthroughs on its hands—a cure for cancer, which would involve inhibiting telomerase in cancer cells, and a cure for aging, which would involve adding it or inducing it to healthy ones. It chose to focus on cancer first.
“That just shocked me,” Andrews says. “People have been looking for something to cure aging from the beginning of time, and this was the closest thing yet.”
Andrews left Geron and, in 1999, started Sierra Sciences, a biotech company focused entirely on aging. Bankrolled by five major investors, he began racing to find a pharmaceutical solution—in essence, a telomere drug. With dozens of staffers by the mid-2000s and a monthly budget of a million dollars, they identified more than 900 chemicals that measurably induced telomerase. Immortality seemed right around the corner. Then the 2008 financial crisis hit, and funding dried up.
By 2013, when Liz Parrish called Andrews, Sierra Sciences was operating on about $100,000 a month, kept afloat largely by the intellectual property it licensed to other companies. Until Andrews could round up serious money again, an FDA-approved telomere drug would be nowhere in sight. When Parrish phoned, he was 61, half a century older than when he’d first decided to cure aging, and the clock was still ticking.
There’s an interesting recording of Parrish and Andrews’s early conversations: a short-lived podcast that Parrish started when she launched the company that preceded BioViva, which she’d called BioTrove Investments. The two of them go over the basics of telomerase, hTERT, and a concept called the Hayflick Limit, a scientific principle established in 1961 by Leonard Hayflick, a professor of medical microbiology, and his colleague, Paul Moorhead.
“A lot of people claim that aging is something that we can do gracefully,” Bill Andrews writes in his new book, ‘Telomere Lengthening.’ “It’s not. Aging is one of the worst things that can happen to a person.”
Until then it was believed that human cells functioned like bacteria—that they could divide forever. Hayflick proved this wasn’t true. He observed that human cells in a petri dish could divide a finite number of times, around 50, before stopping and entering a kind of zombie state known as senescence. A young person’s cells, in general, can keep doubling longer than an elderly person’s.
“Somehow, the cells know how old they are,” Andrews says on the podcast. “The number of divisions levels off. That’s the Hayflick Limit. What’s now known is that it’s caused by telomere shortening.” Parrish asks how telomerase affects the Hayflick Limit. “Well,” Andrews answers, his voice picking up, “it obliterates it.”
Andrews goes on to say that gene therapy is the easiest way to get around the limit, but that the FDA is unlikely to approve such a treatment because aging isn’t classified as a disease. He cautions that the consequences of activating telomerase in all of one’s cells are unknown, and that gene therapy is a serious commitment—you can’t just undo it. “Maybe that might be OK,” he says. “We just don’t know yet.”
He also mentions a 2010 study led by Ronald DePinho, then of Harvard University, in which the result of turning on the telomerase gene in lab mice was a visible and dramatic return of youthfulness. “Whether it’s a true reversal of aging requires more studies,” he concludes. “But it sure looked good. I’d sure like to be one of those mice.”
Parrish laughs. Perhaps she already knows that Andrews will agree to construct part of her gene therapy. “Yeah,” she says. “I think we all would.”
Six months before Bogotá, in March 2015, Parrish made her first public appearance as CEO of BioViva. The setting was a business park in Scottsdale, Arizona, that serves as the meeting place of People Unlimited, a self-described “educational, lifestyle, and social organization for people passionate about living unlimited life spans.” This was a friendly crowd of a few dozen, many on the older side, and they were especially open to Parrish’s message.
The group, whose three leaders had previously run an outfit called the Eternal Flame Foundation, had just lost one of them, a preacher named Charles Paul Brown, who had begun assembling his flock in the 1960s after experiencing what he called a “Christing of the flesh” and supposedly becoming immortal. Acolytes had paid thousands of dollars a year to learn from him and his wife, Bernadeane, and their friend and business partner, James Strole. But Brown had suffered from Parkinson’s and heart disease, and he died at 79. A People Unlimited spokesperson admitted that Brown hadn’t really practiced what he preached—he hadn’t exercised enough, for one thing—and Strole and Bernadeane continued on, trying to inspire the flock without him.
Parrish took the stage at People Unlimited wearing a collared blouse and black blazer, finding her place between a baby grand piano and a clutter of other musical instruments. She’d always hated public speaking. But she was becoming a different person now.
“The reason I got into this was to cure childhood disease,” she said. “I never thought I’d be speaking on longevity. But when I started to look into the science, I started to realize it was time to fight a new war—the first old man’s war. By curing aging, we can help many of the diseases that children have.”
With remarkable fluency, she ran through a history of mortality. Humans once died mostly from infectious diseases. Then we developed antibiotics. Now we die mostly from the maladies of aging—cancer, heart disease, Alzheimer’s. We need to develop a new kind of breakthrough technology, she said. We need gene therapy.
A logo appeared on the screen behind her. “This is my company, BioViva,” she said. She opened her arms grandly, smiled broadly, then giggled. “We want to change everything.”
To get U.S. government approval “to bring gene therapies to you,” Parrish went on, “I would have to go raise almost a billion dollars. It would take about 15 years of testing. And when I’m looking out there, I’m seeing people who don’t want to wait 15 years.” The crowd began clapping, and Parrish fed off it. “How do we actually change this paradigm? Well, what we do is we burn and raze everything to the ground. And we start over.” People hooted and cheered.
In the U.S., she continued, bioethics “go kind of like this: A doctor shall not harm, and yet a doctor shall put you on every pharmaceutical. They’ll put lines into your body. They’ll keep you alive until you absolutely can’t stay alive anymore, and then they’ll let you go, and they’ll feel like they’ve done a good job. I want to change that. I want to say that their experiment has effectively failed. We will now move into what they consider experimental medicine.”
By the time of her talk in Scottsdale, Parrish had already called investor after investor, finally securing one who could provide the $250,000 needed to pay for a gene-therapy experiment in Bogotá. She already knew the test subject would be her.
She had also assembled a team of doctors and scientists at BioViva, including a radiologist named Jason Williams who had signed on as the company’s chief medical officer. Williams was noteworthy for two reasons. First, it was Parrish’s understanding that he had experience with the use of a gene-therapy treatment meant to inhibit the protein myostatin, which regulates muscle growth. (Experiments that inhibited myostatin had resulted in comically ripped “mighty mice” at Johns Hopkins University, as well as the birth around 2000 of a very robust boy in Berlin, who doctors called Superbaby.) Second, he had recently opened a clinic in Bogotá after clashing with the FDA over unapproved stem-cell treatments that he was providing in Alabama.
One of the first things BioViva would do involved “a very special gene therapy,” Parrish told the People Unlimited audience. “It’s special because it’s the only gene therapy that’s actually reversed aging in animals. It reversed aging in every human tissue it’s been applied to.” She smiled again. “This is our biggest hope. Why it has never been used in a human body, I have no idea. I guess that’s why I came along.” The crowd cheered again. “Thank you, thank you,” she said.
As Parrish knew, Strole and Bernadeane were planning something big for 2016: a gathering in Southern California they would call RAADfest—the Revolution Against Aging and Death Festival—which would bring together the true believers of People Unlimited with the more scientific set from SENS 6.
“I understand we’ll be meeting in 2016,” Parrish told the crowd at People Unlimited. “My company will shoot to have results of age reversal by the time we meet.”
As it happened, the news of Parrish’s gene therapy broke before RAADfest. In late 2015, Antonio Regalado, a reporter from MIT Technology Review, began poking around, calling BioViva’s scientific advisers and pressing for details about what had happened in the experiment. At least one of the unpaid advisers, who in many cases had met Parrish at conferences and had been charmed enough to be listed on BioViva’s website, now had questions of their own about what she had done.
She decided to get ahead of the Technology Review reporter, who didn’t initially know that she had been the experiment’s test subject. On a Sunday morning in October, three days before his story was published under the title “A Tale of Do-It-Yourself Gene Therapy,” she logged into Reddit, introducing herself as “the woman who wants to genetically engineer you” and as the CEO of BioViva. “I am not a medical doctor or scientist,” she wrote. But BioViva had just treated its first patient for aging. “AMA,” she typed—ask me anything.
The first commenter asked her favorite pizza topping. “Sun-dried tomatoes,” she answered. “:)”
The next person asked: How did you pick the first patient? “I am Patient Zero,” she answered. “I have aging as a disease.”
Testing BioViva’s products first on herself, Parrish said, had been the only ethical choice. She had been injected with both hTERT and a myostatin inhibitor. The Redditors praised her bravery. “I am proud to have taken part in helping millions of people, even if it has bad results,” she wrote. “I am happy to be Patient Zero. It is for the world, for the sick children and sick old people.”
Was there a cancer risk? someone asked. BioViva would be monitoring all known cancer biomarkers in her body, Parrish answered. But inserting the telomerase gene in lab animals hadn’t increased their cancer rates, she said.
“Do remember that the most important risk factor for cancer is growing older,” she wrote. “Most cancers occur in people over the age of 65.”
What about ordinary people: Would they be able to afford the treatment? “Gene therapy technology is much like computing technology,” she replied. “We had to build the super computer, which cost $8 million in the 1960s. Now everyone has technologies that work predictably and at a cost the average person can afford.”
As the AMA went on, the questions started to become more existential. “If/when this becomes reality for the general public,” someone asked, “how will this affect population rates?” And what about the physical limitations of the planet? What about the possibility that we could create two classes of people: an overclass that could afford to pay for these therapies and an underclass that dies right on schedule?
BioViva wasn’t “trying to determine who should live or die,” Parrish wrote. “Everyone has a right to life without suffering.” A user assailed her logic: “It’s not obviously true that life-extension technology will reduce the number of lives lived in suffering.… You are trying to create technologies which, if successful, are likely to change the distribution of deaths among the population, and the potential wider effects of that change deserve some consideration.”
She responded quickly. “As life span increases, fertility rates go down all over the world,” she wrote. “Humans will create better technology and space travel will increase.” She soon signed off. The good outcomes that had seemed obvious to her were apparently less obvious to the rest of the world.
By the time the MIT Technology Review article came out in October 2015, one member of BioViva’s scientific advisory board, University of Washington gerontologist George Martin, had resigned. Another, George Church, stressed his support for proper clinical trials and seemed to downplay his ties to BioViva.
“I advise people who need advice, and they clearly need advice,” he later told The Guardian—even as his lab accepted the blood samples Parrish sent in after the Bogotá experiment. Early telomere advocate Michael Fossel, a physician who wrote the 1996 book Reversing Human Aging, along with The Telomerase Revolution in 2015, and who now ran a biotech company that planned to use hTERT to combat Alzheimer’s, offered damning praise for Parrish on his blog.
“We cannot help but applaud Liz’s courage in using herself as a subject, a procedure with a long (and occasionally checkered) history in medical science,” he wrote. And doing so “undercuts much of the ethical criticism that would be more pointed if she used other patients.” But the standard path, including FDA-approved trials, assured three things: safety, efficacy, and credibility. In Parrish’s case, what had happened was more like a single trial with a single subject, which wasn’t rigorous enough to provide credible proof of anything. “It is easy to act, it can even be easy to act with genuine compassion,” Fossel concluded, “but it is hard to act effectively and harder still to ensure that compassion is not only the intent, but the final reality.”
Parrish’s Reddit AMA and Regalado’s story were followed by a flood of blog posts, YouTube videos, and interviews with sites like Singularity Weblog and Longevity Reporter. The Guardian and Discover magazine called.
“The experiment seems likely to be remembered as either a new low in medical quackery or, perhaps, the unlikely start of an era in which people receive genetic modifications not just to treat disease, but to reverse aging,” Regalado had written. In the fringe where Bill Andrews and Aubrey de Grey often dipped their toes, where real science mixed with something approaching religion, Parrish became an immediate hero. Conference bookers invited her to give keynote speeches around the world. She was soon flying to Moscow, New York, Hong Kong, Paris, Oslo, Oxford, and even Astana, Kazakhstan. She began living part-time on Bainbridge Island, part-time out of a suitcase.
Parrish’s son came home one day and asked if she had genetically modified herself to stay young. “I was like, ‘Oh, honey, I did,’ ” she recalls. The boy took it in. Then he started singing: “Mom’s gonna live forever.”
She told her best friend what she’d done, then her dad, who’s in his seventies and has early symptoms of Parkinson’s disease. He told her she did the right thing. And yet, for another seven months after the Reddit AMA, even as more news stories ran and Facebook lit up with her name, Parrish still kept the news from her husband and kids.
Then one day in the spring of 2016, her son came home from middle school with a question. He’d read on the internet that she’d genetically modified herself. Was this true?
She couldn’t withhold any longer. “I was like, ‘Oh, honey, I did,’ ” she recalls. The boy, now soccer obsessed and successfully navigating life with diabetes, took it in. Then he started singing: “Mom’s gonna live forever. Mom’s gonna live forever.”
Parrish says her husband was livid when she finally told him, but she still felt sure that her actions were necessary. It wasn’t right to ignore a problem, especially one as big as death, and just leave it for the next generation to try and solve. She did this for the kids, she told her husband. “I’m teaching them how to live.”
It was clear that something had changed inside her, but as time passed it was less than clear whether that something was physical. She hadn’t turned back into a 25-year-old. Nor, on the bright side, did she appear to have cancer. Her biomarkers—triglycerides, C-reactive proteins, muscle mass—were promising but ultimately inconclusive, since they were the results of just one person, and not published in a peer-reviewed study.
In April 2016, BioViva issued another press release: “First Gene Therapy Successful Against Human Aging.” The results of Parrish’s telomere tests were in. Comparing blood that was drawn before and after her procedure, a specialist lab in Houston had determined that her white blood cells’ telomeres—whose length was measured by counting the number of DNA base pairs—had increased by 9 percent. The release said that this was equivalent to reversing 20 years of aging. But there was no published study to go along with it, and the news was easy to dismiss.
Throughout Parrish’s ascent to telomere superstardom, Bill Andrews remained largely silent about her gene therapy—until recently. “I take full blame,” he told me. “I was a chickenshit. You can quote me on that.” He doesn’t regret getting Parrish excited about telomeres, and he doesn’t regret his part in her gene therapy. What he means is that, because he told her he couldn’t be involved in any experiment—because he didn’t want to jeopardize his years of research if it went awry—he wasn’t there at her side to make sure she did it right. “She’s really made telomere biology come out to the forefront,” Andrews says. “She’ll never be left out of the history of telomere biology.” But the fact is, she looks pretty much the same as she did before, and what she did wasn’t a scientific trial. “I can’t even tell if she used a legitimate protocol” when she used the gene therapy, Andrews says. “We didn’t get enough data. We don’t have anything we can really measure.” To Andrews, Parrish is an example of someone who was incredibly brave, but not someone who became young again.
When RAADfest 2017 opened its doors last August, Parrish was halfway through her 46th year. She wore a black dress and red lipstick and an Apple Watch, and in her purse she had an iPhone with an app that let her track her son’s blood-sugar levels in real time, day or night. For the second year in a row, Strole and Bernadeane were hosting RAADfest at the Town and Country San Diego, an old 42-acre resort hotel with swimming pools and plastic flamingos and a convention center that was only a few feet from the edge of Interstate 8.
Beneath the Town and Country chandeliers, gray-haired attendees took slow steps on faded carpets, making their way to the main stage or the exhibition area, known as RAADcity, where marketers hawked nutraceuticals, deuterium-free water, stem-cell banking, ozone therapies, and $100,000 “health-optimization packages.” Bill Andrews sometimes stood next to a nearly full-size portrait of Bill Andrews, which advertised an antiaging skin serum called One Truth 818. One man walked around wearing a shirt that said MAY I BID ON YOUR CRYONICS LIFE INSURANCE?
Parrish tried to steer clear of RAADcity. All the unscientific claims made her uncomfortable, she told me. She strode tall through the conference center, trailed at times by a film crew from the BBC, and strangers and friends kept stopping her. I watched her field questions from a young woman on crutches, then hold hands for half an hour with a hunched old lady from People Unlimited who was begging for access to BioViva’s gene therapy. A young man from New York City whose mother was terminally ill followed Parrish around, writing down everything she said. Just a few years ago, at SENS 6, this had been her. Now she was on the other side, trying to give people hope.
What Parrish had been saying about genomics—that we were on the verge of a revolution—seemed to be coming true. On the first day of RAADfest, just as a biomedical engineer from George Church’s lab at Harvard gave a talk on using the genome-editing tool Crispr to switch genes on and off, attendees saw a headline pop up on their phones: “Gene Editing Spurs Hope for Transplanting Pig Organs into Humans.” A few weeks later, the FDA would approve the first gene-altering treatment to fight leukemia, a therapy from Novartis called Kymriah. Two months after that, it would approve a similar gene therapy for the blood cancer non-Hodgkin’s lymphoma. That fall, gene therapy would also be shown to save children with the fatal brain disease adrenoleukodystrophy, and doctors in Europe would use gene therapy to regrow the skin of a young Syrian boy, saving his life.
At the main stage, I watched Parrish give a rousing speech about medical choice—“You have a right to do with your body what you wish!”—and get a standing ovation. Then I listened as Aubrey de Grey anointed her with a surprise endorsement. Pacing the stage in a red shirt and faded jeans, he described a revelation he’d only had well into his adulthood: not everyone agreed that death was the most important problem in the world.
“You don’t enter into discussions with people about obvious stuff, right?” he said. “I never said, What color do you think the sky is?” He now understood that it wasn’t enough to explain how humans could extend life—they also had to explain why. He could do the science part. Strole and Bernadeane could do the motivation part. “RAADfest is a success because of the combination of those two things,” he said. “But the best thing we could possibly have is to see that combination in a single person. And I believe that Liz Parrish does that better than anybody else.”
Parrish barely caught de Grey’s speech. She was spending a lot of time in the dining hall, huddled at one of the round tables with Andrews, talking in low tones about deals and contracts. A mysterious investor, or rather the mysterious employee of an unnamed potential investor, appeared and disappeared. Another man, with a shaved head and a thick build, sometimes hovered, too.
For two years, Parrish had been claiming that BioViva would soon open overseas clinics—perhaps in the Caribbean or Latin America, perhaps somewhere closer to Europe. Not long before RAADfest 2016, she and Andrews had made a coordinated announcement: they were partnering in a new venture called BioViva Fiji. They showed off an architectural rendering of a generically modern gene-therapy clinic, all steel beams and big windows and wood accents. They seemed to be waiting on funding—Andrews’s usual state of suspended animation, and now, it seemed, Parrish’s, too. When the Fijian press caught wind of BioViva Fiji, authorities told journalists that it didn’t exist, not even on paper. And at RAADfest 2017, neither Parrish nor Andrews seemed too keen to talk about it anymore.
It took a few months before I understood what I was seeing in the dining hall. It was the prelude to a breakup, a friendly (and perhaps temporary) parting of ways. In December 2017, a new company called Libella Gene Therapeutics, run by a bald occupational therapist from Kansas, Jeff Mathis, announced that it had secured an exclusive license from Bill Andrews for his AAV Reverse (hTERT) transcriptase enzyme technology. Libella was now recruiting patients for a first-ever study in Cartagena, Colombia. “By inducing telomerase,” a press release said, “Dr. Andrews and Libella Gene Therapeutics hope to lengthen telomeres in the body’s cells.”
There was no mention of BioViva, no mention of Parrish, no mention of her self-experiment. Parrish and her ambiguous results seemed to be missing from the story. Telomerase had “never been put into humans, except at low doses,” Andrews excitedly told an interviewer. He was certain it was going to work. The upcoming trial in Cartagena, he said, “is actually the first opportunity in over 25 years of research where we’re actually going to be able to show that everything I’ve been doing was worthwhile.”
“We fall into time,” Parrish likes to say. It’s meant to sound futuristic. We always keep ourselves busy, she means. We fill the space. It’s her stock answer to a question immortalists often hear: If we live forever, won’t we get bored? It may also explain how she became Patient Zero, and how nothing and everything has changed since then. Life keeps hurtling forward.
On a recent sunny day on Bainbridge Island, Parrish and I met for lunch so she could tell me about BioViva’s new direction. She looked like a healthy and normal 46-year-old. She said she felt like she had at least a little more energy than before. She wanted to order the soup, but it wasn’t vegan, so she went for a salad.
“So, BioViva is now a bioinformatics company!” she announced. It was pivoting. It wasn’t trying to do clinical trials for the time being. Even offshore, away from the FDA, they cost millions of dollars, and raising that kind of money to do traditional trials would amount to the kind of slow-moving medicine she was trying to overcome. BioViva would be a data platform for other companies, collecting and analyzing the information they gathered from their trials. She mentioned a budding partnership with the broker Integrated Health Systems, which has a sparse-looking website, put together in the past few months, that claims to connect biotech companies and paying patients with doctors who specialize in gene therapy. She mentioned another potential partnership with a company in Hong Kong that does machine learning. She didn’t have anything to say about Libella. She just wasn’t focused on what they were planning in Colombia.
Parrish seemed less guarded than before. Lately, she told me, she had been trying to spend more time at home with her son, like in the days before his diagnosis, before she started traveling constantly. “I’m just so stuck on this kid,” she told me. “He’s getting so big. I’m so proud of him.” She told me about his soccer team. She kept checking his insulin levels with the phone app. She seemed genuinely happy. It was as if she’d stopped trying quite so hard to live forever, but she was still trying hard to live.
We need your support...
Outside Online aims to deliver readers the world, dispatching our writers and photographers to the ends of the earth to report the one-of-a-kind stories that have inspired and informed generations of readers. We hear from our audience every day about how much they love our long-form journalism. But it’s no longer sustainable for us to give it away for free. Making a financial contribution to Outside is not tax-deductible, but it will help pay for the writers, editors, fact-checkers, designers, and photographers that stories like these demand—and will ensure we can keep publishing them for years to come. Please support Outside Online today.Contribute Now