The London Patient, Cured of H.I.V., Reveals His Identity – The New York Times
By daniellenierenberg
A year after the London Patient was introduced to the world as only the second person to be cured of H.I.V., he is stepping out of the shadows to reveal his identity: He is Adam Castillejo.
Six feet tall and sturdy, with long, dark hair and an easy smile, Mr. Castillejo, 40, exudes good health and cheer. But his journey to the cure has been arduous and agonizing, involving nearly a decade of grueling treatments and moments of pure despair. He wrestled with whether and when to go public, given the attention and scrutiny that might follow. Ultimately, he said, he realized that his story carried a powerful message of optimism.
This is a unique position to be in, a unique and very humbling position, he said. I want to be an ambassador of hope.
Last March, scientists announced that Mr. Castillejo, then identified only as the London Patient, had been cured of H.I.V. after receiving a bone-marrow transplant for his lymphoma. The donor carried a mutation that impeded the ability of H.I.V. to enter cells, so the transplant essentially replaced Mr. Castillejos immune system with one resistant to the virus. The approach, though effective in his case, was intended to cure his cancer and is not a practical option for the widespread curing of H.I.V. because of the risks involved.
Only one other individual with H.I.V. Timothy Ray Brown, the so-called Berlin Patient, in 2008 has been successfully cured, and there have been many failed attempts. In fact, Mr. Castillejos doctors could not be sure last spring that he was truly rid of H.I.V., and they tiptoed around the word cure, instead referring to it as a remission.
Still, the news grabbed the worlds attention, even that of President Trump.
And by confirming that a cure is possible, it galvanized researchers.
Its really important that it wasnt a one-off, it wasnt a fluke, said Richard Jefferys, a director at Treatment Action Group, an advocacy organization. Thats been an important step for the field.
For Mr. Castillejo, the experience was surreal. He watched as millions of people reacted to the news of his cure and speculated about his identity. I was watching TV, and its, like, OK, theyre talking about me, he said. It was very strange, a very weird place to be. But he remained resolute in his decision to remain private until a few weeks ago.
For one, his doctors are more certain now that he is virus-free. We think this is a cure now, because its been another year and weve done a few more tests, said his virologist, Dr. Ravindra Gupta of the University of Cambridge.
Mr. Castillejo also tested his own readiness in small ways. He set up a separate email address and telephone number for his life as LP, as he refers to himself, and opened a Twitter account. He began talking weekly with Mr. Brown, the only other person who could truly understand what he had been through. In December, Mr. Castillejo prepared a statement to be read aloud by a producer on BBC Radio 4.
After talking through his decision with his doctors, friends and mother, he decided the time was right to tell his story.
I dont want people to think, Oh, youve been chosen, he said. No, it just happened. I was in the right place, probably at the right time, when it happened.
Mr. Castillejo grew up in Caracas, Venezuela. His father was of Spanish and Dutch descent which later turned out to be crucial and served as a pilot for an ecotourism company. Mr. Castillejo speaks reverently of his father, who died 20 years ago, and bears a strong resemblance to him. But his parents divorced when he was young, so he was primarily raised by his industrious mother, who now lives in London with him. She taught me to be the best I could be, no matter what, he said.
As a young man, Mr. Castillejo made his way first to Copenhagen and then to London in 2002. He was found to have H.I.V., the virus that causes AIDS, in 2003.
I do recall when the person told me and the panic set in, he said. At the time, an H.I.V. diagnosis was often seen as a death sentence, and Mr. Castillejo was only 23. It was a very terrifying and traumatic experience to go through.
With the support of his partner at the time, Mr. Castillejo persevered. He turned the passion for cooking he had inherited from his grandmother into a job as a sous chef at a fashionable fusion restaurant. He adopted an unfailingly healthy lifestyle: He ate well, exercised often, went cycling, running and swimming.
Then, in 2011, came the second blow. Mr. Castillejo was in New York City, visiting friends and brunching on the Upper East Side, when a nurse from the clinic where he went for regular checkups called him. Where are you? she asked. When Mr. Castillejo told her, she would say only that they had some concerns about his health and that he should come in for more tests when he returned to London.
He had been experiencing fevers, and the tests showed that they were the result of a Stage 4 lymphoma. I will never forget my reaction as once again my world changed forever, he said. Once again, another death sentence.
Years of harsh chemotherapy followed. Mr. Castillejos H.I.V. status complicated matters. 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.
There is little information about how to treat people with both diseases, and H.I.V.-positive people are not allowed to enter clinical trials. So with each new chemotherapy combination, Mr. Castillejos doctors were venturing further into unchartered territory, Dr. Edwards said.
With each treatment that seemed to work and then didnt, Mr. Castillejo fell into a deeper low. He saw fellow patients at the clinic die and others get better, while he kept returning, his body weakening with each round.
I was struggling mentally, he said. I try to look at the bright side, but the brightness was fading.
In late 2014, the extreme physical and emotional toll of the past few years caught up to Mr. Castillejo, and two weeks before that Christmas he disappeared. His friends and family imagined the worst, and filed a missing persons report. Mr. Castillejo turned up four days later outside London, with no memory of how he had ended up there or what he had done in the interim. He described it as switching off from his life.
Around that same time, he said, he felt so defeated that he also contemplated going to Dignitas, the Swiss company that helps terminally ill people take their own lives: I felt powerless. I needed control, to end my life on my own terms. He made it through that dark period, and emerged with a determination to spend whatever was left of his life fighting.
Still, in the spring of 2015, his doctors told him he would not live to see Christmas. A bone-marrow transplant from a donor is sometimes offered to people with lymphoma who have exhausted their other options, but Mr. Castillejos doctors did not have the expertise to try that, especially for someone with H.I.V.
His close friend, Peter, was not ready to give up, and together they searched online for alternatives. (Peter declined to reveal his last name because of privacy concerns.) They discovered that at a hospital in London was Dr. Ian Gabriel, an expert in bone-marrow transplants for treating cancer, including in people with H.I.V. Because of their last-ditch effort, Mr. Castillejo said, Were here today. You never, never know.
Within a week, he met with Dr. Gabriel, who tried a third and final time to tap Mr. Castillejos own stem cells for a transplant. When that failed, Dr. Gabriel explained that Mr. Castillejos Latin background might complicate the search for a bone-marrow donor who matched the genetic profile of his immune system. To everyones surprise, however, Mr. Castillejo quickly matched with several donors, including a German one perhaps a legacy from his half-Dutch father who carried a crucial mutation called delta 32 that hinders H.I.V. infection. A transplant from this donor offered the tantalizing possibility of curing both Mr. Castillejos cancer and the H.I.V.
When Dr. Gabriel called with the news in the fall of 2015, Mr. Castillejo was on the top deck of one of Londons iconic red buses, on his way to see his general practitioner for a checkup. His thoughts raced alongside the scenery: He had only recently been told he was going to die, and now he was being told he might be cured of both cancer and H.I.V.
I was trying to digest what just happened, he recalled. But after that call, I had a big smile on my face. Thats where the journey began as LP.
With the possibility of an H.I.V. cure, the case immediately took on intense importance for everyone involved. Dr. Edwards, who had cared for Mr. Castillejo since 2012, had, as a young doctor in the early 1990s, seen many men his age die of H.I.V. What a privilege it would be to go from no therapy to a complete cure in my lifetime, he recalled telling Mr. Castillejo. So you have to get better no pressure.
Dr. Edwards involved Dr. Gupta, his former colleague and one of the few virologists in London he knew to be doing H.I.V. research. Dr. Gupta initially was skeptical; the approach had worked only once, 12 years earlier, with Mr. Brown. But Dr. Gupta also knew that the payoff could be huge. Antiretroviral drugs can suppress the virus to undetectable levels, but any interruption in the treatment can bring the virus roaring back, so a cure for H.I.V. is still the ultimate goal.
Dr. Gupta began carefully monitoring Mr. Castillejos H.I.V. status. In late 2015, Mr. Castillejo was preparing to receive the transplant when another major setback arose. His viral load shot back up with H.I.V. that appeared to be resistant to the drugs he had been taking.
This gave Dr. Gupta a rare glimpse at the typically suppressed virus, and allowed him to confirm that the viral strain was one that would be cleared by the transplant. But it also delayed the transplant by several months while the doctors adjusted Mr. Castillejos medications. He eventually received the transplant on May 13, 2016.
The next year was punishing. Mr. Castillejo spent months in the hospital. He lost nearly 70 pounds, contracted multiple infections and underwent several more operations. He had some hearing loss and began wearing a hearing aid. His doctors fretted over how to get his H.I.V. pills into his ulcer-filled mouth by crushing and dissolving them, or by feeding them to him through a tube. One of the doctors came to me and said to me, You must be very special, because I have more than 40 doctors and clinicians discussing your medication, Mr. Castillejo recalled.
Even after he left the hospital, the only exercise he initially was allowed to do was walking, so he walked for hours around the trendy Shoreditch neighborhood. He went to the flower market there every Sunday, treated himself to salted beef beigels to celebrate small successes and admired the colorful murals and vintage clothes.
A year on, as he became stronger, he slowly began thinking about forgoing the H.I.V. medications to see if he was rid of the virus. He took his last set of antiretroviral drugs in October 2017. Seventeen months later, in March 2019, Dr. Gupta announced the news of his cure.
Neither he nor Mr. Castillejo was prepared for what came next. Dr. Gupta found himself presenting the single case to a standing-room-only crowd at a conference, and shaking hands afterward with dozens of people. Mr. Castillejo was overwhelmed by the nearly 150 media requests to reveal his identity, and began to see a role he might play in raising awareness of cancer, bone-marrow transplants and H.I.V.
He has enrolled in several studies to help Dr. Gupta and others understand both diseases. So far, his body has shown no evidence of the virus apart from fragments the doctors call fossils and what seems to be a long-term biological memory of having once been infected.
Others in the H.I.V. community are reassured by this news, but expressed concern for Mr. Castillejos privacy and mental health.
It can be very important for people to have these kinds of beacons of hope, Mr. Jefferys, the Treatment Action Group director, said. At the same time, thats a lot of weight for someone to carry.
Mr. Castillejos friends have similar worries. But he is as ready as he will ever be, he said. He sees LP as his work identity and is determined to live his private life to its fullest. Having lost his lustrous dark hair several times over, he has now grown it to shoulder length. He has always enjoyed adventures, and with careful preparation he has begun traveling again, describing himself to fellow travelers only as a cancer survivor. He celebrated his 40th birthday with a trip to Machu Picchu, in Peru.
But in conversations about his status as the second person ever to be cured of H.I.V., Mr. Castillejo still adamantly refers to himself as LP, not Adam. When you call me LP, it calms me down, he said. LP to my name, that is kind of a big step.
[Like the Science Times page on Facebook. | Sign up for the Science Times newsletter.]
Read the original here:
The London Patient, Cured of H.I.V., Reveals His Identity - The New York Times
- 001 Expansion of Stem Cells by Valproic Acid [Last Updated On: June 24th, 2011] [Originally Added On: June 24th, 2011]
- 002 Cord Blood and Bone Marrow Stem Cells for Liver Failure [Last Updated On: June 25th, 2011] [Originally Added On: June 25th, 2011]
- 003 Science behind Enhancing Adult Stem Cells for wellbeing [Last Updated On: June 26th, 2011] [Originally Added On: June 26th, 2011]
- 004 Stem cells Transplatation in Completed Paralyze Dog. [Last Updated On: June 26th, 2011] [Originally Added On: June 26th, 2011]
- 005 STEM CELLS - Bone Marrow Stem Cells (Balzitt).flv [Last Updated On: June 27th, 2011] [Originally Added On: June 27th, 2011]
- 006 Bone Marrow Stem Cells/Gene Therapy [Last Updated On: June 28th, 2011] [Originally Added On: June 28th, 2011]
- 007 Stem cells used for medical treatment [Last Updated On: June 30th, 2011] [Originally Added On: June 30th, 2011]
- 008 STEM CELLS FOR OTHER USES Interview with Sam Smith.wmv [Last Updated On: July 1st, 2011] [Originally Added On: July 1st, 2011]
- 009 Stem Cells Reversing Endothelial Senescence [Last Updated On: July 2nd, 2011] [Originally Added On: July 2nd, 2011]
- 010 Bone Marrow Stem Cells [Last Updated On: July 3rd, 2011] [Originally Added On: July 3rd, 2011]
- 011 Bone marrow transplantation HD, ENG subtitles [Last Updated On: July 5th, 2011] [Originally Added On: July 5th, 2011]
- 012 Adult Stem Cells May Target and Repair Heart Attack Damage [Last Updated On: July 6th, 2011] [Originally Added On: July 6th, 2011]
- 013 Bone Marrow Stem Cell Applications [Last Updated On: July 8th, 2011] [Originally Added On: July 8th, 2011]
- 014 Stem cells in bone marrow are being used to treat EB [Last Updated On: July 13th, 2011] [Originally Added On: July 13th, 2011]
- 015 STEM CELLS FOR MACULAR DEGENERATION Sam Smith's story.wmv [Last Updated On: July 14th, 2011] [Originally Added On: July 14th, 2011]
- 016 MS Cure - Progression [Last Updated On: July 14th, 2011] [Originally Added On: July 14th, 2011]
- 017 Blind Girl get's cure you need to see to believe" [Last Updated On: July 17th, 2011] [Originally Added On: July 17th, 2011]
- 018 From Surgical Repair to Stem Cell Repair: A Surgeon's Journey by Leonard Smith MD, FACS [Last Updated On: July 19th, 2011] [Originally Added On: July 19th, 2011]
- 019 Bone Marrow Stem Cell Donation [Last Updated On: July 19th, 2011] [Originally Added On: July 19th, 2011]
- 020 The potential of stem cells [Last Updated On: July 28th, 2011] [Originally Added On: July 28th, 2011]
- 021 LifeCell in Kalaignar Seithigal,Sun News [Last Updated On: July 31st, 2011] [Originally Added On: July 31st, 2011]
- 022 Spirulina DLA Naturals [Last Updated On: August 6th, 2011] [Originally Added On: August 6th, 2011]
- 023 Bill Lahti; stem cell nutrition stimulates wound repair for diabetic stroke victim [Last Updated On: August 6th, 2011] [Originally Added On: August 6th, 2011]
- 024 Christian Drapeau Talk About - Adult Stem Cells and StemEnhance./StemTech [Last Updated On: August 7th, 2011] [Originally Added On: August 7th, 2011]
- 025 "Bone Marrow Stem Cells" Donald Kohn [Last Updated On: August 14th, 2011] [Originally Added On: August 14th, 2011]
- 026 Cancer Update: Autologus Stem Cell (Bone Marrow) Transplant [Last Updated On: September 4th, 2011] [Originally Added On: September 4th, 2011]
- 027 Bone Marrow / Stem Cell Transplant Recovery Fund [Last Updated On: September 6th, 2011] [Originally Added On: September 6th, 2011]
- 028 Bone Marrow/Stem Cell Transplantation: An Introduction, With Sonali Smith, MD [Last Updated On: September 9th, 2011] [Originally Added On: September 9th, 2011]
- 029 Bone Marrow Stem Cell Transplant Live from Top US Hospital [Last Updated On: September 12th, 2011] [Originally Added On: September 12th, 2011]
- 030 Adult Stem Cell Mobilization from Bone Marrow (Animation) [Last Updated On: September 12th, 2011] [Originally Added On: September 12th, 2011]
- 031 MS Cure - Introduction to stem cell bone marrow transplant in Australia [Last Updated On: September 13th, 2011] [Originally Added On: September 13th, 2011]
- 032 Immune Modulation by Bone Marrow Mesenchymal Stem Cells [Last Updated On: September 14th, 2011] [Originally Added On: September 14th, 2011]
- 033 Bone Marrow/Stem Cell Transplant [Last Updated On: September 15th, 2011] [Originally Added On: September 15th, 2011]
- 034 Bone Marrow and Stem Cell Transplant Patients Share Their Stories [Last Updated On: September 20th, 2011] [Originally Added On: September 20th, 2011]
- 035 Stem Cell Transplant India,Bone Marrow Transplant India,Sickle Cell Anemia Treatment India [Last Updated On: September 20th, 2011] [Originally Added On: September 20th, 2011]
- 036 Bone Marrow Stem Cell Expansion by HOXB4 and p21 Knock Out [Last Updated On: September 21st, 2011] [Originally Added On: September 21st, 2011]
- 037 Multiple Sclerosis, Stem Cells, and Hope, Part 2 [Last Updated On: September 22nd, 2011] [Originally Added On: September 22nd, 2011]
- 038 Becoming a Blood Stem Cell Donor [Last Updated On: September 24th, 2011] [Originally Added On: September 24th, 2011]
- 039 LittleBigPlanet 2 - Stem Cell Sackboy Quarter 4 Update (Bone Marrow Bugaloo) [Last Updated On: September 25th, 2011] [Originally Added On: September 25th, 2011]
- 040 Can Stem Cell Prolotherapy or Bone Marrow Prolotherapy help articular cartilage defects? [Last Updated On: September 27th, 2011] [Originally Added On: September 27th, 2011]
- 041 Mesenchymal stem cells and marrow stromal cells [Last Updated On: October 1st, 2011] [Originally Added On: October 1st, 2011]
- 042 Bone Marrow Transplant and Stem Cell Transplant Treatment in India for International patients [Last Updated On: October 5th, 2011] [Originally Added On: October 5th, 2011]
- 043 Bone Marrow Stem Cell Aspiration and Re-Injection with PRP for Osteoarthritis by Dr Adelson [Last Updated On: October 5th, 2011] [Originally Added On: October 5th, 2011]
- 044 Selected Donor for Stem Cell, Bone Marrow [Last Updated On: October 5th, 2011] [Originally Added On: October 5th, 2011]
- 045 Stem Cell Injections - Bone Marrow Prolotherapy - treatment for arthritis [Last Updated On: October 5th, 2011] [Originally Added On: October 5th, 2011]
- 046 Nurses Discuss Special Bonds With Bone Marrow and Stem Cell Transplant Patients [Last Updated On: October 5th, 2011] [Originally Added On: October 5th, 2011]
- 047 Hagen's bone marrow collection part 1 [Last Updated On: October 5th, 2011] [Originally Added On: October 5th, 2011]
- 048 Samsparks after bone marrow collection for stem cell treatm [Last Updated On: October 5th, 2011] [Originally Added On: October 5th, 2011]
- 049 Chat w/ Dr. Maharaj, founder of S. FL. Bone Marrow/Stem Cell Transplant Institute [Last Updated On: October 5th, 2011] [Originally Added On: October 5th, 2011]
- 050 Bone Marrow - Stem Cell Prolotherapy [Last Updated On: October 5th, 2011] [Originally Added On: October 5th, 2011]
- 051 MS Cure - Hickman line Insertion for stem cell/bone marrow transplant [Last Updated On: October 5th, 2011] [Originally Added On: October 5th, 2011]
- 052 Bone Marrow Transplant Program Continues to Grow, Make a Difference [Last Updated On: October 5th, 2011] [Originally Added On: October 5th, 2011]
- 053 Stem cell transplant in children: what to expect | Dana-Farber Cancer Institute [Last Updated On: October 5th, 2011] [Originally Added On: October 5th, 2011]
- 054 LittleBigPlanet 2 - (WIP) Stem Cell Sackboy Bone Marrow Bugaloo [Last Updated On: October 5th, 2011] [Originally Added On: October 5th, 2011]
- 055 Calum's stem cell donation for Anthony Nolan [Last Updated On: October 5th, 2011] [Originally Added On: October 5th, 2011]
- 056 Stem Cell Treatment in New Jersey- Colon's story (Dr Damon Noto) [Last Updated On: October 5th, 2011] [Originally Added On: October 5th, 2011]
- 057 How to be an Anthony Nolan blood stem cell donor [Last Updated On: October 5th, 2011] [Originally Added On: October 5th, 2011]
- 058 Dr Steve talks about stem cells.mov [Last Updated On: October 5th, 2011] [Originally Added On: October 5th, 2011]
- 059 Stem Cells extracted from bone marrow [Last Updated On: October 6th, 2011] [Originally Added On: October 6th, 2011]
- 060 Webinar 1, Stem cell therapy basics, what is available today? [Last Updated On: October 6th, 2011] [Originally Added On: October 6th, 2011]
- 061 Mesenchymal stem cells and marrow stromal cells---2nd--- [Last Updated On: October 8th, 2011] [Originally Added On: October 8th, 2011]
- 062 Harvesting stem cells from horse bone marrow at UT [Last Updated On: October 12th, 2011] [Originally Added On: October 12th, 2011]
- 063 Bone Marrow Stem Cells - Video [Last Updated On: October 13th, 2011] [Originally Added On: October 13th, 2011]
- 064 Stem Cell Transplant Apheresis Method - Video [Last Updated On: October 14th, 2011] [Originally Added On: October 14th, 2011]
- 065 Mantak Chia: Sumup stem cell (Berlin,Germany 2009) Part I : Bone marrow activate Stem cell - Video [Last Updated On: October 16th, 2011] [Originally Added On: October 16th, 2011]
- 066 Stem Cell, Bone Marrow Transplants / Donations - Easy and life saving proceedure - Video [Last Updated On: October 18th, 2011] [Originally Added On: October 18th, 2011]
- 067 HIV/AIDS: Spotlight on Stem Cell Research - Loren Leeds - Video [Last Updated On: October 21st, 2011] [Originally Added On: October 21st, 2011]
- 068 Sickle Cell Anemia: Stem Cell Gene Therapy - Donald Kohn - Video [Last Updated On: October 21st, 2011] [Originally Added On: October 21st, 2011]
- 069 Do you need a large number of stem cells injected for Bone Marrow Prolotherapy to work? - Video [Last Updated On: October 23rd, 2011] [Originally Added On: October 23rd, 2011]
- 070 What are stem cells? - Video [Last Updated On: October 27th, 2011] [Originally Added On: October 27th, 2011]
- 071 What is in situ Stem Cell Injection Therapy or Bone Marrow Prolotherapy? - Video [Last Updated On: October 27th, 2011] [Originally Added On: October 27th, 2011]
- 072 Stem Cells Research at Hadassah - Video [Last Updated On: October 27th, 2011] [Originally Added On: October 27th, 2011]
- 073 Blood or Bone Marrow Cells May Provide a Route to Healing Blood Vessels - Video [Last Updated On: October 27th, 2011] [Originally Added On: October 27th, 2011]
- 074 Hematopoietic stem cell transplantation #2 - Video [Last Updated On: October 28th, 2011] [Originally Added On: October 28th, 2011]
- 075 Radiation - Sickle Cell Half Match Stem Cell Bone Marrow Transplant 2 - Video [Last Updated On: November 7th, 2011] [Originally Added On: November 7th, 2011]
- 076 Sickle Cell Stem Cell Bone Marrow Transplant 3 - Video [Last Updated On: November 7th, 2011] [Originally Added On: November 7th, 2011]
- 077 Macular degeneration - Stem Cell therapy (English subtitles) - Video [Last Updated On: November 13th, 2011] [Originally Added On: November 13th, 2011]
- 078 Where Do The Stem Cells Come From? Hollywood | Los Angeles - Video [Last Updated On: November 13th, 2011] [Originally Added On: November 13th, 2011]
- 079 Bone Marrow Stem Cell Injections - Video [Last Updated On: November 14th, 2011] [Originally Added On: November 14th, 2011]
- 080 Diabetes- Stem cell therapy (english) - Video [Last Updated On: December 2nd, 2011] [Originally Added On: December 2nd, 2011]
