On World AIDS Day , the HIV Commission is calling on the government to ‘test, test, test’ to end all new transmissions of HIV in England by 2030.
A star-studded ensemble including Elton John , Russell T Davies and the cast of Channel 4 drama It's a Sin have backed a campaign by the HIV commission, which calls on the government to fund the fight to end all new cases of HIV in England by 2030.
This comes ahead of the Health Secretary's HIV Action Plan, which is due to be announced by the end of the year.
As part of the ongoing campaign, the HIV Commission published a report outlining 20 recommendations for the government's Action Plan.
The emphasis of the report is on the importance of routine opt-out testing for HIV, regardless of gender, ethnicity or sexuality, to find the estimated 5,900 people living with undiagnosed HIV in England.
According to Public Health England, there were over half a million missed opportunities to test eligible people for HIV in specialist sexual health clinics last year. Half of those were not offered a test, while the other half declined.
There is a disparity between the two groups most affected by HIV in England, with only 4% of gay and bisexual men refusing a test, compared to 20% of black African heterosexual women and 9% of black African heterosexual men.
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These figures led the HIV Commission to recommend no one leaves any sexual health services without being offered a test. Throughout the wider health service, the report recommends that whenever anyone registers for a GP, presents at A&E or has blood samples taken, they should be offered an opt-out, not opt-in, HIV test.
Fraser Wilson, from the charity Terrence Higgins Trust, said: “The reason some people refuse the test is because they are scared,” pointing to the work done in the 1980s, like the terrifying tombstone adverts, to scare people around HIV.
Fraser said: “It's about unlearning that so that people will be proactive in getting tested.”
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Thanks to effective treatment, people diagnosed with HIV today can live normal lives and become undetectable, which means they cannot pass the virus on.
“HIV is a health condition, yet it's treated in a way that very few others are,” said Fraser, “so opt-out testing is about changing that.”
“Lots of things have changed medically surrounding HIV, but the stigma hasn't improved to the same extent,” said Ian Green, CEO of Terrence Higgins Trust.
“But opt-out testing reframes that,” said Fraser, “because everyone is getting tested, you don't feel like you're being stigmatised or judged because of your ethnicity or your sexuality. It becomes a routine part of healthcare.”
Opt-out HIV testing is already routine in maternity services, where a 99% testing coverage has led to almost no babies being born with HIV in England.
Sir Elton John, long-time HIV campaigner, said: “One thing we've learned this year is the importance of testing and testing for HIV is at the core of ending new cases of HIV in England. It's so important for everyone to know their HIV status to protect themselves and others.”
The HIV Commission was established by leading charities Terrence Higgins Trust, National AIDS Trust and Elton John AIDS Foundation, following the Health Secretary's pledge in January 2019 to end all new cases of HIV in England by 2030. It helps ensure consistent progress is made every year between now and the 2030 target.
The Commission is calling for their recommendations to inform the Government's HIV Action Plan, so that sufficient resources and funding is allocated to drastically scale up HIV testing across England's healthcare systems.
Anita was diagnosed with HIV four years after she believes she caught the virus.
While at university in the late 90s, Anita experienced a short flu-like illness most people experience soon after contracting HIV.
“The university health department said I had glandular fever, which is a common presentation of seroconversion symptoms.”
As a heterosexual female Anita was regarded as low risk for HIV, but this would have been challenged by opt-out testing.
“Thinking in terms of who is and isn't at risk can be dangerously excluding and stigmatising,” said Anita, “it's a virus that is looking for opportunity.”
In 2000, Anita felt fatigued and had a persistent cough while running a theatre project.
Three different GPs told her she would be fine after taking paracetamol, yet by the last show, she was coughing into a pillow backstage.
Anita was taken to A&E and transferred to a chest ward with suspected pneumonia a few days later.
She continued to decline after being given antibiotics.
“I was spiking fevers, I was catastrophically thin and I wasn't eating. Eventually somebody suggested I take a HIV test and my reaction was… well I'm married.”
Anita was placed on a ventilator in intensive care, suffering from pneumonia and a number of hospital acquired infections.
“People were coming to say goodbye. The blood test was done around this point but I was unconscious on a ventilator.
“It was incredibly traumatic for my family and friends. It was horrific, it was like the late 80s before we had treatment.”
Anita considers her experience a collective failure, as there were many opportunities to have tested her for HIV.
“Early testing could have saved me and my family all of that trauma. Not to mention how much money I cost the NHS . I don't want anyone else to needlessly go through that.”
Anita was placed on antiretroviral medication following her diagnosis and has since been living well.
She serves as a peer mentor to people who are struggling with their diagnosis and is part of Terrence Higgins Trust's Positive Voices community.
“The more we talk about HIV, the more we normalise it as a health condition, not a social disease. It's something in the population that we need to be careful and curious about.
Hopefully, it won't be in the population by 2030 with funding in place.”
Ian Green: CEO, Terrence Higgins Trust
Terrence Higgins Trust is the UK's leading HIV and sexual health charity.
Founded by the partner and friends of Terry Higgins, one of the first people in the UK to die of an AIDS-related illness, the charity supports people living with HIV.
Ian is determined to ensure that HIV is not forgotten by the government.
“We've all lived through the Covid-19 pandemic recently, so it's important to remember that the HIV pandemic still exists, which is scandalous really, because effective treatment is available for people to live a normal life with a normal life expectancy.”
Terrence Higgins Trust would like opt-out testing to become available everywhere, beginning with areas where there is a high prevalence of HIV.
“There needs to be a focus on marginalised communities, like black African communities, who are less likely to have access to support,” said Ian.
Ian was diagnosed with HIV in 1996, when effective treatment was just becoming available.
“I was very lucky to be put on a trial for new medication just after I was diagnosed,” said Ian, “back then, treatments were designed to prolong life and they had awful side effects, so it's incredible that things have changed so significantly.”
Thanks to treatments that keep those diagnosed with HIV well and stop the virus from being passed on, and PrEP medication which prevents somebody from contracting HIV, Ian says “we have all of the tools in the toolbox to eradicate all new cases of HIV by 2030. It's absolutely achievable, as long as the government, NHS, charities and civil services propel resources into this.”
Actor and HIV activist Nathaniel Hall stars in Russell T Davies' acclaimed drama It's a Sin, which follows five friends across the AIDS crisis in the 80s and 90s.
With over 6.5 million viewers, the drama is Channel 4's biggest instant box set.
“Undoubtedly It's a Sin has had an impact,” said Nathaniel.
“It brought HIV into the national conversation.”
On the first day of HIV Testing Week, which coincided with the broadcast of It's a Sin, 8200 testing kits were ordered in a single day, smashing the previous record of 2,800.
“To land that gig with one of my screenwriting heroes was incredible,” said Nathaniel.
“The good drama drew that huge audience in and it became an amazing opportunity for charities and people with HIV to educate.”
Nathaniel says that It's a Sin comes at the end of a long line of tireless work by activists, charities and organisations who are calling on the government to meet the target of 0 HIV in 2030.
“We are really close”, he said, "so hopefully the government will put their money where their mouth is and not slip up on that commitment.
“As somebody living with HIV, it was a real honour to tell those stories in It's a Sin,” Nathaniel said.
“I had lots of people message me and say that it meant a lot to them to have somebody with lived experience of HIV in that cast.”
Nathaniel was diagnosed with HIV aged 17, only a short while after coming out as gay.
Years later, he wrote a play about his experience. His one-man show First Time tells his story of growing up gay and HIV positive, through a series of personal letters, poems, confessions and Nathaniel's drag alter-ego, Sue.
*Nathaniel Hall is on tour with his autobiographical play First Time. It will be at the Contact Theatre in Manchester from 30 Nov to 4 December and then tours the UK again from January 2022. See nathanieljhall.co.uk for venues and dates.
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