The last 20 years of Adam Castillejo’s life were filled with health complications and a struggle for his life after being diagnosed with HIV and stage 4 lymphoma.
But just a few years ago her life changed in another unexpected way: Castillejo, known to the world as the ‘London Patient’, was declared the second person to be cured of HIV in March 2019.
The first person cured of the virus was Palm Springs resident Timothy Ray Brown, who became known as the “Berlin Patient” in 2008 because of where he was living at the time. Brown, 54, died of cancer recurrence in 2020.
Related: ‘People living with HIV are my family’: London patient found cured joins Palm Springs man, who was first
After: Memorial for Timothy Brown, first person cured of HIV, planned in Palm Springs
Castillejo will share his story with community members and join researchers at the Timothy Ray Brown Community HIV Cure Symposium from 3-6 p.m. Sunday at the Hyatt Palm Springs, 285 N. Palm Canyon Drive, as well as on Zoom. Brown’s partner Tim Hoeffgen will also pay tribute at the event.
The symposium, organized by the RID-HIV Collaboratory and the HIV+ Aging Research Project-Palm Springs, is free and open to the public, and a reception will be held afterwards. For those wishing to participate in the event virtually, the Zoom link can be accessed at https://bit.ly/3BS86CM
This is Castillejo’s first time visiting Palm Springs, he said in an interview Tuesday with The Desert Sun, and said he was looking forward to experiencing the desert heat after a chilly start to the season. autumn in London.
But above all, he hopes his story can inspire many people living and aging with HIV locally.
“Being an Ambassador of Hope means supporting all the great work that all activists and advocates are doing for our HIV community,” Castillejo, 43, said. “Personally, my commitment is to give hope to millions of people living with HIV around the world and to lead the way in the fight against the stigma and discrimination that our community faces on a daily basis.”
“I won the lottery”
Castillejo was born in Venezuela, but lived more than 20 years in Europe. He moved to London in the early 2000s and learned in 2003 that he had tested positive for HIV.
“My life changed in that moment. When you have an HIV diagnosis, they tell you that you will live 10 years maximum, and if you are lucky, 20 years. And then they say to you, ‘Now go Get out there and enjoy whatever you have left,’ which is a really, really hard thing to do,” Castillejo said. “For me, it was really difficult. It was like a death sentence.”
What made matters even more difficult were the stories of the 1980s and 1990s, which saw hundreds of thousands of people, especially men who have sex with men, die from the virus.
But as the years progressed, there was hope for people living with HIV to lead healthy lives. The United States Food and Drug Administration approved the first pre-exposure prophylaxis (or PrEP) drug, taken to prevent HIV, in 2012. And thanks to other drugs available, people living with HIV who have a level undetectable virus in their blood can’t transmit it to others.
Then, in 2011, Castillejo received more devastating news. While traveling in New York, he received a call from a medical professional who expressed concern about his health. Later, tests revealed he had stage 4 lymphoma.
“Ten years later I had to relive that whole feeling of panic, devastation, horror, fear,” the England resident said. “But this time, I was able to talk about it. I was able to tell people that I had cancer, and they supported me. People were very caring towards me about my HIV diagnosis because it was shameful.”
Years of chemotherapy followed with numerous hospital stays, and his HIV status further complicated treatments. In the spring of 2015, he was diagnosed as terminally ill and told he wouldn’t live to see the Christmas holidays, let alone New Years, and was placed in hospice care. But Castillejo said he didn’t accept the prognosis.
He brought together a new medical team, which had expertise in bone marrow transplants for the treatment of cancer, and in the management of people living with HIV. When a match was found, Castillejo learned that the transplant could not only cure his cancer, but also cure him of HIV. The donor carried a mutation that prevented HIV infection.
Brown, the Berlin patient, also received a bone marrow transplant – twice because his leukemia returned after the first stem cell transplant – from a donor who was genetically resistant to the form of HIV Brown had.
Castillejo couldn’t believe the news.
“The first thing I thought was I won the lottery; I can’t believe what I’m hearing. I was sent to hospice a few months ago, and now I have a chance to survive and get rid of my cancer and HIV,” he said. “Others don’t understand this journey, they don’t realize the pressure, mental and physical, that I’ve been under to be offered a transplant.”
His chances of survival were 10% to 20%, but Castillejo said he would “rather die fighting than sit in a hospice”.
Castillejo underwent the transplant in May 2016. The road to recovery was difficult, but his doctors grew more confident that the transplant would be successful in curing both of his diagnoses. He took his last anti-retroviral drugs in October 2017 and in March 2019 the London Patient was introduced to the world.
“I never thought I would be healed in my lifetime. I think most people believe that because it’s such a hard thing to heal. Now to be one of the ‘selected’ to be healed, it’s just breathtaking,” Castillejo reflected. “People ask me if I feel special, but I say I was in the right place at the right time.” He also praised the UK healthcare system for making it possible to receive care.
It took a while for Castillejo to reveal his identity in an interview with The New York Times in March 2020, but he said he felt good enough to embark on the adventure and ready to embrace the London Patient. .
Castillejo acknowledges that his treatment is unique and not applicable to most, but he hopes his story, through all its ups and downs, can “inspire the next generation of researchers in the crusade against HIV.”
Since HIV and AIDS were discovered four decades ago, five people have been or may have been cured of HIV.
Previous reporting by The Desert Sun contributed to this report.
Ema Sasic covers entertainment and health in the Coachella Valley. Contact her at [email protected] or on Twitter @ema_sasic.