A year ago, Castillejo became the second person in the world to beat the virus. He and his doctors tell Rosie Kinchen the extraordinary story.
In March last year a British doctor made his way to a conference in Seattle with some extraordinary news. His patient, a 40-year-old man with HIV, had undergone a bone marrow transplant that had removed the virus from his body. The London Patient, as he was known, became the second person in the world to be cured of HIV.
Back at home the patient himself, Adam Castillejo, was following the excitement on TV. He watched the news bulletins in a state of shock, saw President Trump tweeting the good news of this "cure" and wondered if there would ever be a time when he could make sense of it all. When I meet Castillejo, a year after the revelatory headlines, he still cannot believe his luck. "I feel like I won the lottery," he says. "Sometimes people think money is a lot, but actually health is more important than all the money in the world."
Castillejo should really not be sitting opposite me in an east London pub. Coronavirus is beginning to spread and as a transplant patient he is in the high-risk category. He is healthy but weak, has had five operations in the past year and I can see hearing aids — a legacy of his transplant — skirting the top of both ears. But he is conscious that, now more than ever, people need stories of hope, and what has happened to him is an example of medicine at its most miraculous.
Castillejo was born in Venezuela, but moved to Europe in his teens and settled in London in 2002. He was diagnosed with HIV the following year, at the age of 23. "I recall the nurse telling me," he says. "My mind went into panic. I thought, 'I am going to die.' " By the early 2000s the diagnosis was not quite the death sentence it had been 20 years previously. Castillejo's doctors assured him that with the right medication he could live "10 years, maximum 20 years". He was fortunate to have a supportive boyfriend, who encouraged him to try to "embrace" the condition.
He got a job as a sous-chef in a fashionable fusion restaurant and made sure he lived as healthy a life as possible. He stopped drinking and smoking. He cycled. He went to the gym. He remembers taking his first antiretroviral pill, which would keep the virus levels under control, and realising with a sense of shock that he would be taking the drugs for the rest of his life. He told a small group of people — the stigma of the condition had lived on — but otherwise life continued.
Then in 2011 another bombshell dropped. He had been feeling unwell and assumed it was a bug he'd picked up as a result of his suppressed immune system. He took antibiotics, but it didn't go away. He was in New York visiting friends, eating brunch on the Upper East Side, when the nurse called and told him to go to the clinic as soon as he could. Back in London, a doctor informed him that he had stage 4 Hodgkin lymphoma, a type of blood cancer that affects the immune system.
"It was very challenging," Castillejo says. "You have another death sentence." Once more panic set in, but this time he felt the danger was more real "because cancer can kill you faster". The doctors tried to reassure him. They told him lymphoma was often curable and that his prognosis was good. He began a course of chemotherapy, but the cancer soon came back. For the next four years he had course after course of chemotherapy. Sometimes he would go into remission for a week, sometimes for three months, sometimes he wouldn't go into remission at all. "I can recall one very intensive chemotherapy regime," he says. "It was very draining and I nearly ended up in the intensive care unit. I was told at the end that it hadn't worked. I was devastated."
With each course he understood that his chances of surviving the cancer were getting slimmer. The HIV was an added complication. Little is known about how to treat people with both illnesses as HIV-positive patients are generally excluded from clinical trials. Each time Castillejo's oncologists adjusted his cancer treatment, the infectious-disease doctors had to recalibrate his HIV medications.
"It was then that both illnesses became one because you had to deal with the antiretroviral medications not interfering with the chemotherapy regime and vice versa," Castillejo says. Often there was a period of limbo after his medications changed while the doctors assessed whether he was strong enough to endure another round of chemotherapy. Even the specialists acknowledged they were in uncharted territory: they couldn't always tell which side effects were caused by which treatments.
By the end of 2014 the doctors had reached a dead end. "They didn't know where to go next," Castillejo says. He felt powerless. "I had lost control of my life. At this point I felt that this was probably it. I thought I had reached the end and I would rather die in a controlled environment than in a hospice or in palliative care."
He talked to his doctors and to his family — his mother lives with him in London and has been his "rock" through it all — and made up his mind to go to Dignitas. His family were heartbroken but said that they understood. It was around this time that Castillejo disappeared. His family feared the worst and registered him as a missing person. He was found four days later outside London and given psychological support. Even now he has no recollection of this period, his mind had simply shut down. By the summer his prognosis had worsened. The doctors told him there was nothing more they could do. They gave him six months to live and said that he probably wouldn't see Christmas.
Then suddenly his outlook changed. He went from accepting death to being set on beating it. "Something in my brain just switched," he says. Bone marrow transplants are sometimes given to patients with advanced lymphoma, but his doctors had never tried it with a patient with HIV. With the help of a close friend, he found an expert who had — and successfully so.
Within days Castillejo was sitting in Dr Ian Gabriel's office at the Chelsea and Westminster Hospital. There were two options, Gabriel told him. The least risky would involve harvesting stem cells from his own body; the other — a transplant using cells from a donor — was an aggressive treatment that would be physically demanding. The second option was rarely considered, Gabriel says, "because general opinion has been that patients with HIV do not do well". The doctors at University College London (UCL) had already twice attempted to use Castillejoʼs own stem cells for a transplant, but he recalls Gabriel saying: "Let's have another go." However, his body had been weakened by the chemo and once more the procedure failed. The only option left was to try a donor.
For a bone marrow transplant to stand a chance of successfully killing the lymphoma cells, the patient must undergo a course of chemotherapy to weaken the immune system. The donor stem cells then develop into new immune cells that will fight the foreign lymphoma cells. However, as Gabriel points out, "if you had lymphoma and I gave you my bone marrow, my cells would also attack your liver and your cells and your skin". Success hinges on a delicate balance. For Castillejo, the decision was simple. "At that time I accepted straight away, because what choice have I got? I would rather die fighting," he says.
Gabriel got in touch with Dr Eduardo Olavarria, medical director of the blood and transplantation unit at Hammersmith Hospital, and the two men set about trying to find the right donor. Gabriel was not optimistic about their chances of success because of Castillejo's ethnicity. But, for once, luck was on his side. One day Castillejo was sitting on the top of a double-decker bus on his way for a check-up when Gabriel called to tell him that he had found several suitable donors, including one who presented a unique opportunity. As well as being a good match for the transplant, one German donor also carried a genetic mutation that hinders HIV infection. The gene, which affects a protein called CCR5 on the surface of white blood cells, prevents HIV from entering these cells and damaging the immune system.
A transplant from a donor with the CCR5 mutation had been successful in treating HIV once before. Twelve years ago Timothy Ray Brown — the "Berlin Patient" — had been given a bone marrow transplant from someone with the same gene mutation and in 2011 was heralded as the first person to be cured of HIV. Castillejo's mind began to race. A short while previously he had been given six months to live; now he was being told he could be cured of both the cancer and HIV. Gabriel enlisted the help of Dr Ravindra Gupta, a former colleague and virologist at UCL who specialises in HIV drug treatment. "While I was optimistic, there was an element of risk involved and some anxiety," says Gupta, who is now a professor of microbiology at Cambridge University. "There are high-profile examples of people who have stopped their antiretrovirals and then got very sick when the cure attempt failed for various reasons." It was quite possible that the procedure would not work at all.
That Christmas, for the first time in years, Castillejo was given a break from his hospital treatments. He spent Christmas Day with his mother and a family friend, where they ate turkey and celebrated the end of an extraordinary year. However, from a psychological point of view it was important for him not to get his hopes up. The doctors recommended that he simply focused on getting rid of the cancer. "I was very pragmatic. Some part of me was hopeful, but another was thinking about the facts," he recalls. The transplant was scheduled for May 13, 2016, and he grew more apprehensive as the day approached. "I was hopeful, I was scared. You know the risks."
On the day itself a nurse from the Anthony Nolan trust sat with him and provided updates about the transplant. She told him when it had been loaded onto the aeroplane, when it had landed and when it was on its way. As it came in through the hospital doors, she handed him a card to celebrate what they hoped would be the first day of a new life.
It would take months to ascertain whether the transplant had been a success. "By day 30 you gauge whether the bone marrow has taken," Gabriel says. "By day 100 you check to see if the patient is still alive because there are a lot of things that can go wrong."
Recovery was gruelling. Ulcers in his mouth meant that he struggled to eat and his antiretroviral medication had to be crushed and washed down. He lost nearly five stone (31kg). At one point more than 40 medical practitioners were concerned with his care and he was taking 60 pills a day. "I told my doctors there weren't enough hours in the day to take all the medication I needed," Castillejo recalls. He tried to think an hour at a time and focused on relearning simple tasks: to stand, to walk, to hold a spoon without dropping it simply out of exhaustion. "Sometimes you would be having a conversation with me and I would just fall asleep," he says.
The reaction to a bone marrow transplant can be severe; Timothy Ray Brown was placed in an induced coma and nearly died. It is not uncommon to need a second transplant. However, 12 months on, the doctors were confident that Castillejo's transplant had been a success. The cancer had not come back and his health steadily improved. It was suggested that he should stop the antiretroviral medication so that his HIV status could be assessed. It was a troubling time for Castillejo, who was afraid the virus could still be in his body, but felt indebted to the medical team. "I knew how much effort the doctors had invested in me," he recalls. "I felt a responsibility to science and my doctors and the wider community."
He also remained acutely aware of the discrimination and negative attitudes that persist towards people living with HIV. "When I told people I had cancer, they were compassionate and kind. Mention HIV and you felt you were victimised. You were guilty. This is a punishment for you," Castillejo says. "I still wanted to be an HIV-negative man."
He stopped taking the pills on his 38th birthday. The first test showed no signs of the virus in his blood. Nor did the next one. But they couldn't leap to conclusions. Some patients had tested negative only for it to rebound nine months later. By March last year Gupta was confident enough to go public and today he says he is 99 per cent sure that Castillejo's HIV won't come back.
The significance of this is both large and small. Bone marrow transplants will never become a routine cure for HIV — the risks of the procedure are simply too great. Where it does raise possibilities is in the field of gene therapy, if it were possible to target the CCR5 receptor in people with HIV. In some ways itʼs the symbolism of the "cure" that matters more. The London Patient has triumphed over an illness that brought misery and shame; he has proved that it is possible to beat a virus that seemed unbeatable.
Since Gupta pronounced him cured of HIV in Seattle that day, Castillejo has been trying to come to terms with his place in history. He credits Brown for helping him to see the potential for a new sort of role. The two men were introduced by their doctors and they speak every week. "We are like brothers," Castillejo says with a laugh. The first time Brown answered the phone, he said: "Welcome to the family." Castillejo has since set up a new email address and Twitter handle — the London Patient — to keep his remarkable medical identity separate from his own.
Today he seems content. He has grown his hair because, finally, he can. He smiles broadly and laughs a lot. He still lives in London with his mother and would like to return to his work as a chef in the near future. He is not angry that illness has consumed so much of his life. Castillejo more than anyone knows the importance of optimism. With coronavirus spreading, he says it is imperative that people "build a community and support each other through difficult times". He would like to be seen, he says, as an "ambassador of hope."
HIV in numbers
• 37.9 million The number of people living with HIV in 2018, including 1.7 million children under 15
• 24.5 million The number of people accessing antiretroviral therapy, as of the end of June 2019
• 40 per cent The reduction in new HIV infections since the peak in 1997
Statistics: UNAIDS 2020
Written by: Rosie Kinchen
© The Times of London