A year after the “London Patient” was introduced to the world as only the second person to be cured of HIV, he is stepping out of the shadows to reveal his identity: He is Adam Castillejo.
Six feet tall and sturdy, with long, dark hair and an easy smile, Castillejo, 40, exudes good health and cheer. But his journey to the cure has been arduous and agonizing. He wrestled with whether and when to go public. Ultimately, he said, he realized that his story carried a powerful message of optimism.
“This is a unique position to be in, a unique and very humbling position,” he said. “I want to be an ambassador of hope.”
Last March, scientists announced that Castillejo, then identified only as the “London Patient,” had been cured of HIV after receiving a bone-marrow transplant for his lymphoma. The donor carried a mutation that impeded the ability of HIV to enter cells, so the transplant essentially replaced Castillejo’s immune system with one resistant to the virus. The approach, though effective in his case, was intended to cure his cancer and is not a practical option for the widespread curing of HIV because of the risks involved.
Only one other individual with HIV — Timothy Ray Brown, the so-called Berlin Patient, in 2008 — has been successfully cured. In fact, Castillejo’s doctors could not be sure last spring that he was truly rid of HIV, and they tiptoed around the word “cure,” instead referring to it as a “remission.”
For Castillejo, the experience was surreal. He watched as millions of people reacted to the news of his cure and speculated about his identity. “I was watching TV, and it’s, like, ‘OK, they’re talking about me,’ ” he said. “It was very strange, a very weird place to be.” But he remained resolute in his decision to remain private until a few weeks ago.
For one, his doctors are more certain now that he is virus-free. “We think this is a cure now because it’s been another year, and we’ve done a few more tests,” said his virologist, Dr. Ravindra Gupta of the University of Cambridge.
Castillejo also tested his own readiness in small ways. He set up a separate email address and telephone number for his life as “LP,” as he refers to himself. In December, Castillejo prepared a statement to be read aloud by a producer on BBC Radio 4.
“I don’t want people to think, ‘Oh, you’ve been chosen,’ ” he said. “No, it just happened. I was in the right place, probably at the right time, when it happened.”
Castillejo grew up in Caracas, Venezuela. His father was of Spanish and Dutch descent — which later turned out to be crucial — and served as a pilot for an ecotourism company. His parents divorced when he was young, so he was primarily raised by his industrious mother, who now lives in London with him.
He was found to have HIV, the virus that causes AIDS, in 2003.
“I do recall when the person told me and the panic set in,” he said. At the time, an HIV diagnosis was often seen as a death sentence, and Castillejo was only 23.
Then, in 2011, came the second blow.
He had been experiencing fevers, and the tests showed they were the result of a Stage 4 lymphoma. “I will never forget my reaction as once again my world changed forever,” he said.
Years of harsh chemotherapy followed. Each time his oncologists adjusted his cancer treatment, the infectious-disease doctors had to recalibrate his HIV medications, said Dr. Simon Edwards, who acted as a liaison between the two teams.
In late 2014, the extreme physical and emotional toll of the past few years caught up to Castillejo, and two weeks before that Christmas he disappeared. He turned up four days later outside London, with no memory of how he had ended up there or what he had done in the interim. He described it as “switching off” from his life.
He made it through that dark period and emerged with a determination to spend whatever was left of his life fighting.
Still, in the spring of 2015, his doctors told him he would not live to see Christmas. A bone-marrow transplant from a donor is sometimes offered to people with lymphoma who have exhausted their other options, but Castillejo’s doctors did not have the expertise to try that.
His close friend, Peter, was not ready to give up, and together they searched online for alternatives. (Peter declined to reveal his last name because of privacy concerns.) They discovered that at a hospital in London was Dr. Ian Gabriel, an expert in bone-marrow transplants for treating cancer, including in people with HIV.
Within a week, he met with Gabriel, who tried a third and final time to tap Castillejo’s own stem cells for a transplant. When that failed, Gabriel explained that Castillejo’s Latin background might complicate the search for a bone-marrow donor who matched the genetic profile of his immune system. To everyone’s surprise, however, Castillejo quickly matched with several donors, including a German one — perhaps a legacy from his half-Dutch father — who carried a crucial mutation called delta 32 that hinders HIV infection. A transplant from this donor offered the tantalizing possibility of curing both Castillejo’s cancer and the HIV.
Edwards involved Gupta, his former colleague and one of the few virologists in London he knew to be doing HIV research.
Gupta began carefully monitoring Castillejo’s HIV status. In late 2015, Castillejo was preparing to receive the transplant when another major setback arose. His viral load shot back up with HIV that appeared to be resistant to the drugs he had been taking.
This gave Gupta a rare glimpse at the typically suppressed virus and allowed him to confirm that the viral strain was one that would be cleared by the transplant. But it also delayed the transplant by several months while the doctors adjusted Castillejo’s medications. He eventually received the transplant May 13, 2016.
The next year was punishing. Castillejo spent months in the hospital. He lost nearly 70 pounds, contracted multiple infections and underwent several more operations.
A year on, as he became stronger, he slowly began thinking about forgoing the HIV medications to see if he was rid of the virus. He took his last set of antiretroviral drugs in October 2017. Seventeen months later, in March 2019, Gupta announced the news of his cure.
Castillejo sees LP as his “work” identity and is determined to live his private life to its fullest. Having lost his lustrous dark hair several times over, he has now grown it to shoulder length. He has always enjoyed adventures, and with careful preparation he has begun traveling again, describing himself to fellow travelers only as a cancer survivor.
But in conversations about his status as the second person ever to be cured of HIV, Castillejo still adamantly refers to himself as LP, not Adam. “When you call me LP, it calms me down,” he said. “LP to my name, that is kind of a big step.”