Adam Castillejo (Caracas, 43 years old) has already made medical history. An anecdote in science, for now, but one that has opened the doors – and hope – to a cure for HIV. This British chef of Hispanic-Dutch descent is the so-called London patient, the second person in the world to rid himself of his HIV infection after a stem cell transplant. The third case was published this Monday, the patient from Düsseldorf.
Above all, Castillejo is “a survivor,” he says. HIV and Cancer. He was diagnosed with the AIDS virus in the early 2000s, when the disease was “a death sentence” for those who suffered from it, he says; and scarcely a decade later he was accompanied by a very serious lymphoma which rendered him almost hopeless. But against all odds, he was saved from both ailments simultaneously by a complex bone marrow transplant from a compatible donor who also had a genetic alteration that prevented HIV from entering cells. This aggressive treatment caused the cancer to go away first, and then the HIV.
Castillejo has been without antiretroviral treatment for five years and the virus is not emerging. No sign of cancer either, although he is still recovering from the transplant and staying away from the hearth. At present. His dream, he assures in a conversation with EL PAÍS via video conference from London, is to create a restaurant with fusion cuisine, as is his origin and his life path: descendant of Spaniards and Dutch, he studied French cuisine but his great experience is in Scandinavian Gastronomy, Where are your best friends from? “I would like a piece from Venezuela, for example, with a Danish touch and a South African or Korean brand. I like a mix,” explains Castillejo, who is now committed to raising awareness of HIV and also plans to create a foundation with his scientific name: the London patient.
Questions. What was your diagnosis of HIV infection?
Answer. That was in London in 2003 and it was a very hard experience because it was a death sentence for me at the time. They were from back in the 90’s when AIDS was something very final where people were dying. When I am diagnosed they tell me, ‘You have 10 years to live and if you are lucky you may live 20. Enjoy it.” It was tough, but I didn’t let HIV rule my life.
Q How did you live the first few years with HIV?
R I didn’t let the virus define me. i am adam I took a positive attitude: Live life because I couldn’t let the disease destroy me. For others it was difficult [entenderlo] because you try to tell people and there are people who have never spoken to me again. You find yourself with a lot of ignorance and it is important to know when you are going to say your diagnosis. And there’s a moment when you ask yourself: Why do I have to tell everyone that I have HIV? It’s an evolution: first you feel the rejection of many people, but then you see the reason for this rejection (ignorance, fear, taboo…). But I didn’t let that fear rule my everyday life.
Q And with HIV comes cancer. What was it like living with the virus and suddenly bad news again?
R In 2012 I was diagnosed with a very aggressive stage IV lymphoma. It was another death sentence but this time I was able to speak, I was able to tell people I had cancer and people gave me support, affection, love and support. With HIV, I couldn’t because of the stigma, the hate, and I decided it would be better not to tell the public for fear of rejection. That’s why I say when they gave me this different death sentence, different, it was different because I could lean on the people, even though it was deadlier this time.
Q When did you propose this transplant to cure both diseases?
R The doctors first looked for a transplant to cure my cancer, because back then, in 2015, when they offered me the possibility of this transplant, I was in an incurable condition, they had given me six months to live: I was ready, going to hospice or a transplant. When they tell me they found a donor I was super excited. But they tell me: “We have another surprise for you. We don’t just want to cure cancer, we also want to cure HIV.” And I: wow!
Q That was not to be expected…
R At this moment the story of the London patient begins. There I feel a responsibility to science and to humanity because there was an opportunity to heal what in 40 years was incurable. But it was a long process and they told me, ‘We will try to do the transplant, but our job is to cure your cancer. We do it together because the possibility exists [de curar también el VIH] it exists, but the priority is cancer.” It’s important for people to know that because they write to me saying they want a transplant to cure themselves of HIV, but that’s not what it’s for. The transplant is very hard, dangerous and risky. In my case, when they offered it to me, I had at most a 20 percent chance of survival. I had two choices: that or go to palliative care. Obviously I chose to die fighting.
Q How have you lived this time since you received the transplant until you were told you were free of the disease?
R We went through the transplant, the cancer was already in remission and when it came time to screen for HIV it was 12 months before I stopped taking antiretrovirals. When we decided to stop taking the medication, it was a mental storm I wouldn’t wish on anyone: the very thought of having HIV again sent me into panic attacks and great anxiety because I didn’t want to have the disease again. On my birthday in September 2017, I decided to stop taking the medication: it was like giving myself a gift.
Q How did they tell you that you are still free of the virus despite stopping your medication?
R It wasn’t from one day to the next. I had very continuous checking and then we started to see that there was no trace of cancer or HIV and you are adjusting to the possibility that you are actually cured. But our doctors give us moderate expectations because there was a possibility that the virus could rise again. 18 months passed before the doctors told me, “We think you’re cured of HIV.”
Q What was going through your mind at that moment?
R How can we verify it so that the whole world will acknowledge and accept that I am healed? We spent a whole year running all sorts of tests to verify this.
Q Two death sentences at the end and you’re still here.
R I won the lottery: I was cured of two incurable diseases.
What impressed me the most is being part of history: in 100 years I will be in the science books.”
Q How do you live virus free?
R I’m still the same Adam as always. What changes is people’s perception of me, people see me differently because I’m healed. I’m lucky to have been in the right place at the right time, but as a person I’m still the same. Maybe more adventurous because life gave me a second chance.
Q Is that stigma gone?
R The stigma branched out. There are people who still don’t understand that I’m healed and don’t process that word, but I also faced severe discrimination from my own community while I was healed. There’s a part of my HIV community that doesn’t accept me because I’m healed: “You’re healed, you’re not part of the group anymore, go. Bye”. I don’t belong to your identity anymore. That’s why I say to everyone, that I am and will remain part of the community: I am a survivor.
Q They say it’s still the same, but scientifically it’s almost unique. How do you live this uniqueness?
R What impressed me the most is being part of the story, of the books. It took me a while to accept: we are 8,000 million people in the world and I am the second person who managed to get cured from this virus. It’s an acceptance process, but with a lot of humility because it’s a very privileged position. And at the same time I’m thinking, “Adam, in 100 years people will be studying the books and you’ll be in the history books, science books.” That was the hardest thing for me to accept: being part of human history. It means having no ego, thinking that I’m better than others because we’re all the same, but knowing that you’ve done something important for humanity is a huge milestone.
Q Does this heritage weigh?
R It’s a jacket you’re wearing and it’s very heavy, but you wear it with a lot of pride and dignity because you’re doing something beautiful for humanity.
Q His case was published anonymously in the scientific literature. Why did you decide to reveal your identity?
R For the responsibility of science. I couldn’t live with day after day hiding this message of hope to give to humanity.
Q What are you doing right now?
R I travel the world, I go into labs, I talk to scientists, I do motivational talks and I’m very aware of the progress… My future is to set up a foundation, the London Patients’ Foundation, dedicated to spreading my message.
Q Are you afraid that the virus will come back or get infected again?
R There are nine variations of HIV. All of us who are healed are immune to eight. Of course, there is always this risk, but you have to take that into account personally. You must prevent this, because the scientific work I have done cannot be lost.
HIV is still a taboo subject for many people: it is a human disease, not a homosexual one.”
Q It’s been 20 years since he got infected. The perception of HIV is no longer the same on the street, it’s not a death sentence. Some toilets complain that risk perception has decreased.
R We’ve already reached the point of being a chronic disease in the first world, but AIDS kills more than 700,000 people on the planet. People think that this is a disease where you take a pill and life gets on with it. No, it’s a chronic disease and if you get it you’re three times more likely to get cancer. I hope you don’t have to be on the pill because prevention is the best medicine. HIV is still a taboo subject for many people today. It’s a human disease, not a homosexual one. You have to educate. My wish is that we can talk about HIV like cancer, naturally and without fear, without fear.
Q Regarding the investigation, the third cured patient was released this Monday. How did you live it?
R I have known him personally for years and it was an instant connection, we are brothers. He always supported me and I him. He is very happy. I wish him all the best. We are five patients: the one from Berlin, me, the one from Dusseldorf and two others, the patient from New York and the patient from City of Hope (California). [estos dos últimos aún no se han publicado en revistas científicas]. The patient from California, the one from Düsseldorf and I are the three musketeers, we have a WhatsApp group by that name.
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