Richard Angell
Campaigns Director at Terrence Higgins TrustThis piece will feature in Chamber’s Q4 journal, which will be released on 15th December. To register to receive your free copy, sign up here.
It sounds odd to say, but it is an honour, a privilege and, dare I say, exciting, to work in HIV advocacy. For the first time, we have all the tools necessary to stop new HIV cases in the UK. Just think about that for a moment. No one being told the news that evokes icebergs and tombstones. It is within our grasp.
Developments in HIV are truly remarkable, yet still, we have no cure and no vaccine. However, what we do have is the most transformational medicine. People living with HIV on effective treatment no longer have the virus attacking their immune system and cannot—no ifs, no buts—pass on the virus. In the 2018 PARTNER2 study, there were two million acts of condomless sex between couples where one person was living with HIV, and there was not one HIV transmission. The science is clear. This is the miracle that HIV has been hoping for and it is a game changer in the endeavour to stop the epidemic in the UK.
Why? The task is simple and three-fold. One, diagnose everyone living with HIV. Two, ensure they are on—and remain on—treatment. Three, those who test HIV negative should use the prevention tools available—condoms, the drug PrEP and, if they suspect exposure, PEP.
Opt-out Testing for HIV
Key to all of this is testing for HIV. The biggest reason why people still do not test is stigma—people’s minds associate the virus with death and the fear that they will be infectious to others. Only untreated HIV can have such consequences. Knowing your status is powerful.
However, testing for HIV is exceptional in the NHS. It is something that you sneak off to a sexual health clinic for, or secretly order online. In a hospital, it is too often the test of last resort, unless you are a gay or bisexual man. This fails women, people of black ethnicity and those who are older—all the groups that are most likely to be diagnosed late, with years of untreated HIV.
The good news is, we now know what works. Off the back of the HIV Commission—the report that gave the blueprint that allowed our country to be first place in the world to meet the UNAIDS goal of no new HIV cases by 2030—we have been normalising HIV testing in hospitals. Last World AIDS Day, in 2021, the Government scaled a remarkable Elton John AIDS Foundation trial. With £20 million of new money, they funded ‘opt-out’ HIV testing in A&Es in London, Blackpool, Brighton and Central Manchester—the highest HIV prevalence areas in England. Launched to coincide with World AIDS Day 2022, the results from the first 100 days of the rollout are truly remarkable.
Some 128 people were newly diagnosed and 63 people were found who had lost touch with their HIV clinic. We hear that half of the former category, and two-thirds of the latter, had late-stage HIV. They were on course for what we used to call AIDS. However, this routine testing has, in almost every case, saved their lives, and in all cases, has saved the NHS money. It is crass to bring these things down to pounds and pennies, but that is how the system thinks. With another wave of austerity, it might be even more important that we can make the case that to invest is to save. The first four months, represents about one-ninth of the funding, meaning that £2.2 million has been spent to date. Diagnosing someone before HIV is in its late stage, reduces the average cost of treatment from £100,000 to just £14,000. About half of these cases were not diagnosed late, which is a minimum saving of £6 million. This figure is even higher when you add in late-stage people that were found before needing time in intensive care (easily another £1 million in savings). Also, those that were lost by their HIV clinic, are now able to get back into treatment (with further savings). That is a pretty good return on investment in anyone’s book.
Added to this, ‘opt-out’ HIV testing is the best intervention for tackling health inequalities. Women are normally 25% of new HIV diagnoses, but they are 30% of those in A&E. There is a similar increase in those of black people of African and Caribbean heritage—normally 19% but 45% in A&E. Older people no longer get missed—an 89-year-old is currently the oldest person newly diagnosed through opt-out testing, and over 65s makeup 1 in 14 of those A&E diagnoses.
In partnership with the National AIDS Trust, the Elton John AIDS Foundation and the whole HIV sector, we want to see this rolled out to the next tranche of hospitals. This first wave is taking place in 33 A&Es in the four cities of very high prevalence, but we now need this kind of investment in the 38 hospitals in the 29 cities with the next highest prevalence level.
This will be transformative. There are twice as many people outside London that are undiagnosed, and those beyond the capital are more likely to be diagnosed late. Since 2016, the National Institute for Health and Care Excellence (NICE) has said that this A&E testing should be happening in the latter 29 cities. The funding is not only much needed, but it is overdue.
For anyone thinking that these numbers are small, to put this in context, only 4660 people in England are believed to be living with undiagnosed HIV—so small numbers have a significant impact. These are all tests that are in addition to all the great work done by sexual health services, maternity services and community HIV testers. Invariably, these are people that would not, and have not, been found by existing services.
Every new person on treatment is someone not having HIV attack their system and someone no longer able to pass it on to a sexual partner; in London, Blackpool, Brighton and central Manchester, 200 people have been found. This means that there are 200 who have not been found beyond these cities, which otherwise would have been, had all areas of high HIV prevalence been funded. That is a travesty.
This remarkable new testing route, plus the higher-than-expected new finds and the excellent return on investment involved, give us reason to be optimistic.
Final Thought
Ministers, MPs, councillors and NHS decision-makers reading this—please give us more of the same. We know it works, saves money and changes lives. Remove this lost opportunity to test people living in Peterborough or Portsmouth, Sandwell or Southampton, Thurrock or Trafford. The goal of ending new cases of HIV can be achieved on your watch, but only if good practice like this is rolled out to everywhere that it is needed.
Please act quickly, the 2030 target to achieve zero new HIV transmissions and zero HIV-related deaths in England, is not far away.
The LGBT+ Commission, hosted by Curia held an inquiry into LGBT+ healthcare, including access to sexual health services. Read the interim report of the LGBT+ Commission here.