Until a few months ago, the little we knew about the two patients who had been cured of the Human Immunodeficiency Virus (HIV) infection was the name “Timothy Ray Brown” and the so-called “London Patient,” who were the focus of worldwide attention for being the symbol of hope for those suffering from the stigma of a historic epidemic.
After receiving a bone marrow transplant, both patients showed symptoms of what researchers cautiously called “long-term remission,” a supposed cure that occurs when the patient manages to incorporate the CCR5 protein — a mutation that prevents the virus from attaching to certain immune cells — into his or her blood.
The transplant in both cases allowed virus-resistant immune cells to spread and eventually replace the patients’ entire immune load, but the treatment appeared to be directly linked to the simultaneous treatment of the blood cancer present in both.
Although Brown spoke openly of his case 12 years ago, Adam Castillejo chose the option of remaining under a pseudonym — until now.
In a conversation with the New York Times, and after considering the pros and cons of going public, the former “London Patient” decided to become “an ambassador of hope” and tell his story.
At first, dealing with public speculation about his case was a delicate matter. His doctors wanted to be really sure that the “remission” could now be called a “cure.” So he decided to put together a digital personality under his pseudonym, which would eventually lead to a statement to 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.”
Born in Caracas to a father of Spanish and Dutch descent, Castillejo was raised mainly by his mother, who now lives in London with him. After living a few years first in Copenhagen and then in London, he received his diagnosis 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 Mr. Castillejo was only 23.
Despite having adopted a healthy life and a passion for cooking that gave him professional stability, in 2011 he was diagnosed with a stage 4 lymphoma, which Castillejo remembers as “another death sentence.”
That’s when both treatments started to become almost antagonistic.
“Each time his oncologists adjusted his cancer treatment, the infectious-disease doctors had to recalibrate his H.I.V. medications, said Dr. Simon Edwards, who acted as a liaison between the two teams,” the Times recalls.
Between 2014 and 2015, and after a personal crisis over not finding a way out, Castillejo and his close friends got in touch with Dr. Ian Gabriel in London, a specialist in bone-marrow transplants, who warned that his Latin background “might complicate the search for a donor.”
It was thanks to the European ancestry inherited from his father that the young Venezuelan got several donors who matched his genetic profile, “including a German one who carried a crucial mutation called delta 32 that hinders H.I.V. infection.”
The rest is history.
With a team of virologists monitoring his viral load and his response to antiretroviral treatment to prepare him for the operation, and despite some setbacks, Castillejo finally received the transplant on May 13, 2016.
The recovery, on the other hand, was a complex matter: The young man had to spend months in the hospital, presenting multiple infections and having to be operated on several more times. Once out of the hospital, the only physical activity he could do was walk, which he did for hours every day.
A year later, the strength and change was evident. His last dose of antiretrovirals was in October 2017, and in March 2019 his doctors announced the news of his cure.
While Castillejo’s story is worthy of celebration, it also tells of the acute risk that patients of Latino descent face in accessing new alternatives. Not only are Latinos a community with more obstacles in accessing treatment and sex education, but in Castillejo’s experience, their genetic profile could hinder access to these novel solutions.