The 'London patient': "I won the lottery: I have been cured of two incurable diseases"

Adam Castillejo (Caracas, 43 years old) is already the history of medicine.

An anecdote in science, for now, but one that has opened the doors —and hope— to a cure for HIV.

Behind this British chef with Spanish-Dutch ancestry hides the so-called London patient, the second person in the world who has managed to get rid of HIV infection after a stem cell transplant.

This Monday the third case has been published,

Castillejo is, above all, "a survivor," he says.

HIV and cancer.

He was diagnosed with AIDS virus infection in the early 2000s, when this disease was still "a death sentence" for those who suffered from it, he recounts;

and, barely a decade later, he was joined by a very serious lymphoma that left him almost hopeless.

But against all odds, he was saved from both ailments at the same time, with a complex marrow transplant from a compatible donor who also had a genetic alteration that prevented HIV from penetrating cells.

This aggressive treatment made the cancer remit, first, and then the HIV.

Castillejo has been without antiretroviral treatment for five years and the virus does not appear.

There is no trace of cancer either, although he is still convalescing from the transplant and remains away from the stove.

For now.

His dream, he assures in a conversation with EL PAÍS by videoconference from London, is to set up a fusion cuisine restaurant, like his origins and his life path: descendant of Spanish and Dutch, he studied French cooking, but his great experience is in Scandinavian gastronomy, Where are your best friends from?

“I would like to have a part from, for example, Venezuela, with a Danish touch and a South African or Korean brand.

A mix is ​​what I like, ”explains Castillejo, now dedicated to raising awareness about HIV and also planning to create a foundation with his scientific name:

.

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Third patient in the world cured of HIV infection after a stem cell transplant

Ask.

How was your diagnosis of HIV infection?

Answer.

It was in 2003 in London and it was a very hard experience because at that time it was a death sentence for me.

At that time, you came from the nineties, when AIDS was something very terminal, where people died.

When I am diagnosed, they tell me: "You have 10 years to live and if you are very lucky, you can live 20. Enjoy them."

It was hard, but I didn't let HIV determine my life.

Q.

How did you live those first years with HIV?

R.

I did not let the virus define me.

I am Adam.

I took a positive attitude: living life because I couldn't let the disease destroy me.

For other people it was difficult [to understand] because you try to tell people and there are people who never spoke to me anymore.

You find yourself with a lot of ignorance and it is important to know when you are going to say your diagnosis.

And there is a moment when you ask yourself: why do I have to tell everyone that I have HIV?

It is an evolution: at first you feel the rejection of many 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.

Q.

And with HIV comes cancer.

What was it like living with the virus and suddenly another bad news?

A.

In 2012, I was diagnosed with stage IV lymphoma, very aggressive.

It was another death sentence, but this time I could talk, I could tell people that I have cancer and people gave me support, affection, love and support.

With HIV I couldn't do it, because of the stigma, the hate, and I decided it was better not to tell the general public for fear of rejection.

That is why I say that when they gave me that other death sentence, another one, it was different because I could lean on the people, although this time it was more terminal.

Q.

When did they propose that transplant to cure both diseases?

R.

The doctors, first, were looking for a transplant to cure cancer, because at that time, in 2015, when they offered me the possibility of that transplant, I was in a terminal state, they had given me six months to live: I was ready to go to hospice or transplant.

When they tell me that they have found a donor, I was super excited.

But they tell me: “We have another surprise for you.

We not only want to cure cancer, we also want to cure HIV”.

And me: wow!

Q.

You didn't expect that...

R.

At that moment the story of the

.

There I feel the responsibility towards science and towards humanity because there was the possibility of curing something that had been incurable in 40 years.

But it was a long process and they told me: “We are going to try to do the transplant, but our job is to cure your cancer.

We do it together because the possibility [to also cure HIV] exists, but the priority is cancer.”

It is important that people know this because they write to me saying that they want to have a transplant to cure themselves of HIV, but it is not for that.

The transplant is very hard, dangerous and risky.

In my case, when they offered it to me, I had, at most, a 20% chance of survival.

I had two options: that or go to palliative care.

Obviously, I decided to die fighting.

Q.

How did you live from the time you had the transplant until you were told you were free of the disease?

R.

We passed the transplant, the cancer was already in remission and when the time came to check for HIV, it took 12 months until I stopped antiretroviral treatment.

When we decided to stop taking the drugs, it was a psychological storm that I wouldn't wish on anyone: just thinking about having HIV again gave me panic attacks and a lot of anxiety because I didn't want to have the disease again.

I decided to stop taking the medication on my birthday, in September 2017: it was like giving myself a gift.

Q.

How did they tell you that you were still free of the virus despite stopping the medication?

R.

It was not from one day to the next.

I had a very continuous control and then we began to see that there was no trace of cancer or HIV and you are adapting to the possibility that you are indeed cured.

But our doctors give us measured expectations, because there was a possibility that the virus could rise again.

18 months passed when the doctors told me: "We think you are cured of HIV."

Q.

What was going through your mind at that moment?

R.

How can we verify it so that the whole world approves it and accepts that I am cured?

We spent a whole year doing all possible tests to verify it.

Q.

In the end, two death sentences and you're still here.

R.

I won the lottery: I have been cured of two incurable diseases.

What struck me the most is being part of history: in 100 years I will be in the science books”

Q.

How do you live free of the virus?

R.

I am still the same Adam as always.

What changes is the perception of people towards me, people see me differently because I am cured.

I'm lucky to have been in the right place at the right time, but as a person, I'm still the same.

More adventurous, perhaps, because life has given me a second chance.

Q.

Is there no longer that stigma?

A.

The stigma has spread.

There are people who still do not understand that I am cured and do not process that word, but I have also had great discrimination, while cured, by my own community.

There is a section of my HIV community that does not accept me because I am cured: “You are cured, you are no longer part of the group, leave.

Bye”.

I no longer belong to your identity.

That's why I tell everyone that I am still and will continue to be part of the community: I am a survivor.

Q.

You say that it is still the same, but scientifically it is almost unique.

How do you live that uniqueness?

R.

What struck me the most is being part of history, of books.

That took me a while to accept: we are 8,000 million people in the world and I am the second person who has managed to be cured of this virus.

It is an acceptance process, but with a lot of humility because it is a very privileged position.

And at the same time, I think: “Adam, in 100 years, people are going to study the books and you are going to be in the history books, science books”.

That was the hardest thing for me to accept: being part of the history of humanity.

It is not having an ego to think that I am better than others, because we are all the same, but knowing that you did something important for humanity is a great milestone.

Q.

Does that legacy weigh?

R.

It is a jacket that you wear and it is very heavy, but you wear it with great pride and dignity because you are doing something beautiful for humanity.

Q.

Your case was published anonymously in the scientific literature.

Why did you decide to reveal his identity?

R.

For the responsibility of science.

I could not live with myself from day to day hiding that message of hope that I can give to humanity.

Q.

What do you do now?

R.

I travel the world, I go to laboratories, I talk to scientists, I give motivational talks and I am very aware of the advances… My future is to make a foundation, the London patient foundation,

to spreading my message.

Q.

Are you afraid that the virus will come back or be reinfected?

A.

There are nine variations of HIV.

All of us who are healed are immune to eight.

Of course, there's always that risk, but that's something you personally need to consider.

You must take your preventive measures to avoid that, because we cannot lose the scientific effort that has been achieved with me.

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 you got infected.

The perception of HIV is no longer the same on the street, it is not a death sentence.

Some toilets complain that the perception of risk has decreased.

R.

We have already reached the point, in the first world, that it is a chronic disease, 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 goes on the same.

No, it is a chronic disease and if you get it, the possibility of having 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 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, this Monday the third cured patient was published.

How have you lived it?

R.

I have known him personally for years and it was an immediate connection, we are brothers.

He has always supported me and I him.

He is very happy.

I wish him well.

We are five patients: the one from Berlin, myself, the one from Düsseldorf and two others, the patient from New York and the patient from City of Hope (California) [these last two have not yet been published in scientific journals].

The patient from California, the one from Düsseldorf and I are the three musketeers, we have a WhatsApp group with that name.

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