The London Patient: ‘I feel like I won the lottery: I have been cured of two incurable diseases’
Adam Castillejo, 43, was the second person in the world to be declared completely free of HIV following a stem cell transplant to eliminate his lymphoma
Adam Castillejo, 43, has made medical history. Right now he is just an anecdote in medical science, but his case opened the door and inspired hope for a cure for HIV. This Venezuela-born British chef of Spanish-Dutch descent is the so-called London Patient, the second person in the world to be cured of HIV following a stem cell transplant. The third case, the Düsseldorf Patient, was published in the scientific journal Nature Medicine on Monday.
Castillejo, who went public about his identity in March 2020, says he is “a survivor.” He has in fact survived two diseases, HIV and cancer. He was diagnosed with HIV, the virus that causes AIDS, in the early 2000s, when the disease was still “a death sentence,” as he puts it. Just a decade later, he was diagnosed with Stage 4 lymphoma, which made him an almost hopeless case. But against all odds, he was saved from both ailments at the same time by a complex bone marrow transplant from a compatible donor who also had a genetic alteration that prevented HIV from penetrating the cells. This aggressive treatment first caused the cancer to go into remission, and then cured him of HIV.
Castillejo stopped taking antiretroviral treatment five years ago, and the HIV has not come back. There is no trace of cancer either, although he is still convalescing from the transplant that gave him HIV-resistant stem cells from a donor, and he has not returned to work. For now, at least. In a teleconference from London, he tells EL PAÍS that his dream is to have a fusion-cuisine restaurant that reflects his origins and the course of his life: he’s of Spanish and Dutch descent and studied French cuisine, but most of his experience involves the cooking of Scandinavia, the region where his best friends come from. “I would like [the cuisine] to have a bit of, for example, Venezuela, with a Danish touch and influence from South Africa or Korea. I like a mix,” he explains. Currently, Castillejo is concentrating on raising awareness about HIV and plans to create the London Patient Foundation to aid in those efforts.
Question. When and how were you first diagnosed with HIV?
Answer. It was in 2003 in London, and it was a very hard experience for me because at the time it was a death sentence. At that time, [just after] the 1990s, when AIDS was something very deadly [and] people were dying. When I was diagnosed, they told me, “You have 10 years to live and, if you are very lucky, you can live 20 years. It was hard, but I didn’t let HIV determine my life.
Q. What was it like for you to live with HIV during those early years?
A. I didn’t let the virus define me. I am Adam. I took a positive attitude and lived [my] life because I couldn’t let the disease destroy me. It was hard for other people [to understand] because you try to tell people, and there are people who never spoke to me again. You encounter a lot of ignorance and it’s important to know [that] when you’re going to tell [people about] your diagnosis. And there’s a moment when you ask yourself: why do I have to tell everyone that I have HIV? It’s a progression: at the beginning, you feel rejected by a lot of people, but then you see the reason for that rejection (ignorance, fear, taboo...). But I didn’t let that fear determine my day-to-day life.
Q. What was it like to live with the virus and then, suddenly, get more bad news on top of that?
A. In 2012, I was diagnosed with very aggressive Stage 4 lymphoma. It was another death sentence, but this time I could talk [about it], I could tell people that I had cancer, and people were supportive, caring, they gave me love and support. With HIV, I could not [talk about] it, because of the stigma, the hatred, and I decided it was better not to tell the general public out of a fear of rejection. That is why I say that when they gave me another death sentence… it was different because I could rely on people, although this time it was a more terminal [disease].
Q. When did they suggest doing the transplant to cure both diseases?
A. First, the doctors were looking to do the transplant to cure the cancer, because at that time, in 2015, when they offered me the option of that transplant, I was a terminal case; they had given me six months to live: [it] was [either] going into a palliative care center or [having] the transplant. When they told me they found a donor, I was super excited. But then they told me, “We have another surprise for you. We don’t just want to cure your cancer; we want to cure your HIV as well.” And I’m like, “Wowwww!”
Q. You didn’t expect that...
A. That was when the story of the London Patient began. I felt a responsibility to science and to humanity then because there was the possibility of curing something that had been incurable for 40 years. But it was a long process and they told me: “We are going to try to do the transplant, but our role is to cure your cancer. We’re doing it [all] together because the possibility [of also curing HIV] exists, but the priority is cancer.” It’s important for people to know [that], because they write to me saying they want to do the transplant to cure HIV, but that’s not what it’s for. Transplantation is very hard, dangerous and risky. In my case, when I was offered it, I had, at most, a 20% chance of survival. I had two options: that or go into palliative care. Obviously, I decided to die fighting.
Q. What was it like for you in the period from when you had the transplant to when you were told you were free of the disease?
A. I went through the transplant; the cancer was in remission, and when the time came to check on my HIV, it had been 12 months since I’d stopped the antiretroviral treatment. When we decided to stop the medication, it was psychologically [very difficult], and I wouldn’t wish it on anyone: just thinking about having HIV again, I had panic attacks and a lot of anxiety because I didn’t want to have the disease again. I decided to stop the medication on my birthday, in September 2017: it was like giving myself a present.
Q. How were you told that you’d been cured of HIV after you’d stopped taking the medication?
A. It didn’t happen overnight. I was continuously monitored and then we started to see that there was no trace of cancer or HIV, and you adapt to the possibility that you might be cured. But [my] doctors tempered [my] expectations, because there was a possibility that the virus could come back. It was 18 months later when the doctors told me: “We think you are cured of HIV.”
Q. What went through your mind then?
A. How can we verify it so that the whole world will agree and accept that I am cured. We spent a whole year doing every possible test to prove it.
Q. In the end, you were given two death sentences, but you are still here.
A. I won the lottery: I have been cured of two incurable diseases.
What has impacted me the most is being a part of history: in 100 years I will be in the science books
Q. What is life like now that you are virus-free?
A. I am still the same Adam as I always was. What changes is people’s perception of me; people see me differently because I am cured. I am fortunate to have been in the right place at the right time, but as a person, I am still the same. [I am] more adventurous, perhaps, because life has given me a second chance.
Q. So, you don’t face any stigma anymore?
A. The stigma has branched out. There are people who still don’t understand that I’m cured and cannot wrap their heads around that word, but [now], being cured, I’ve also faced a lot of discrimination from my own community. There’s a section of my HIV community that doesn’t accept me [now] because I’m cured: “You’re cured, you’re not part of the group anymore, go away. Ciao.” They no longer identify with me. [But] that’s why I tell everyone that I am still and will remain part of that community: I am a survivor.
Q. You say you are still the same, but scientifically you are unique. What does that uniqueness feel like?
A. What has impacted me most is being a part of history, in the books. It took me a while to accept it: there are eight billion people in the world, and I am the second person who has been cured of this virus. It is a process of acceptance, but [it comes with] a lot of humility because it is a very privileged position. And at the same time, I think [to myself]: “Adam, in 100 years …you are going to be in the history books, in the science books.” That was the hardest thing for me to accept: being a part of human history. It’s not about having an ego or thinking that I’m better than anyone else, because we’re all equal, but knowing that you did something important for humanity is a major milestone.
Q. Does that legacy weigh on you?
A. It’s [like] a jacket that you put on and it’s very heavy, but you wear it with a lot of pride and dignity because you are doing something beautiful for humanity.
Q. Your case was published in the scientific literature anonymously. Why did you decide to reveal your identity?
A. Out of a sense of responsibility to science. I could not live with myself each day if I hid the message of hope that I can give to humanity.
Q. What do you do now?
A. I travel around the world, I go to labs, I talk to scientists, I do motivational talks and I am very aware of the advances [in medicine]...In the future, I’ll start a foundation, the London Patient Foundation, dedicated to spreading my message.
Q. Are you afraid that the virus will come back or that you’ll be reinfected?
A. There are nine variants of HIV. All of us who are cured [of the disease] are immune to eight. Of course, there is always that risk, but that is something that one must take into consideration. You have to take precautions to avoid that; what the scientists achieved with me can’t go to waste.
HIV is still a taboo subject for many people: it’s a human disease, not a homosexual disease
Q. It’s been 20 years since you were infected. Now, the popular perception of HIV is different; it’s no longer seen as a death sentence. Some health care providers worry that the perception of risk has gone down.
A. We’ve reached that point; in the first world, it is [seen as] a chronic disease, but AIDS kills over 700,000 people worldwide. People think that this is a disease for which you take a pill and life goes on as usual. No, it’s a chronic disease, and if you get it, [your] risk of getting cancer is three times higher. I hope you don’t have to take the pill because prevention is the best cure. Today, HIV is still a taboo subject for many people. It is a human disease, not a homosexual disease. We have to educate [people]. My hope is that we’ll be able to talk about HIV like we talk about cancer, naturally and fearlessly.
Q. Regarding research on this topic, the third cured patient’s case was published this Monday. What are your thoughts about it?
A. I have known him personally for years, and it was an immediate connection; we are [like] brothers. He has always supported me, and I have always supported him. He is very happy. I wish him all the best. There are five of us now: the one from Berlin, myself, the one from Düsseldorf and two others, the New York Patient and the City of Hope (California) Patient [the latter two cases have not yet been published in scientific journals]. The California Patient, the Düsseldorf Patient and I are [like] the three musketeers; we [even] have a WhatsApp group with that name.
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