HIV Activist Reflects on Early Diagnosis

Jonathan Blake, an HIV activist, recounts the moment he was diagnosed at 33. “I was told I had a virus with no cure and, well, between three to nine months to live,” he recalls. His diagnosis occurred in October 1982 at Middlesex Hospital, marking him as perhaps the first person in the UK identified with HIV.

Blake was given the designation Patient L1 due to the early prevalence of the virus in the UK Aids epidemic, and his narrative later appeared in the 2014 film “Pride.” When he looks back, he reflects on how every single lymph node in his body “had just erupted.” After several tests in hospital, he spent two days isolated in a side ward.

Now 76, he remembers feeling stunned when doctors informed him about the future of palliative care. “I’m 33, do I really want to hear about palliative care?” he thought at the time. Despite his struggles, he has approached life with determination, stating, “I’ve been living with this virus, literally just trying to live every day.” It’s a constant presence, but he’s focused on making the most of each moment.

A Forgotten Epidemic

HIV is a virus that attacks the immune system, diminishing the body’s ability to fend off infections. Aids, which is not contagious itself, occurs when HIV brings about severe immune system damage, leading to life-threatening infections.

The concept of “U = U,” meaning “Undetectable = Untransmittable,” wasn’t commonly recognized until 2015, releasing Blake from a stigma he had felt about carrying “poisoned blood.” If a person maintains an undetectable viral load, they cannot sexually transmit the virus, which was a game-changer for many in the community.

Statistics show that by 1999, 33 million people globally were living with HIV, with Aids considered the fourth leading cause of death at that time. The National Aids Trust reports that in 2023, over 107,000 people received HIV care in the UK, a remarkable 27% increase over the last decade.

Blake emphasized the urgency of reopening dialogues around HIV: “It’s a forgotten epidemic… A lot of that is to do with stigma.” He expressed gratitude for the effective medication provided by the NHS, which he considers vital. “The most important thing is to know your status, be brave, get tested,” he encouraged, noting that developments in treatment are remarkable, despite there being no cure. “I’m living proof.”

Recently, Blake attended the launch of a report titled, “Getting to Zero by 2030: HIV in London,” which outlines a vision for addressing HIV in the city. The report emphasized that, while progress has been made, stigma and misunderstandings about HIV still prevail.

London has experienced historically higher rates of HIV infection compared to the rest of the UK. The Assembly’s report indicated that while efforts in prevention and treatment are commendable, a concentrated effort is essential to bolster testing and improve access to medications like PrEP.

• The report suggests elevating the conversation about HIV and essential actions needed to meet the 2030 goal.
• The mayor should promote initiatives like the HIV Confident charter to encourage more organizations to participate.
• It’s recommended that the memorial’s construction be completed by the end of 2027, providing a space for advocacy against stigma.

Increase in Cases

Chair of the London Assembly Health Committee, Krupesh Hirani, pointed out that London is “a long way off” from reaching its 2030 objectives. After a prolonged decline in new cases, an uptick has been observed since 2020, prompting calls for further actions from the mayor’s office.

A spokesperson for Mayor Sadiq Khan indicated that the government has plans for a new HIV action plan and readiness to collaborate with ministers to help eradicate HIV cases by 2030, aiming for a healthier future for all Londoners.

In December 2023, Khan announced funding towards a permanent memorial for HIV and Aids victims, set to be unveiled in 2027. Blake, who has lost many friends to this epidemic, expressed hope that the memorial will serve as a place of reflection and community connection. “This memorial will mean that everyone who lost their life had meaning,” he said, emphasizing its importance in honoring those affected by HIV.