Above: Stuart Smith, Vanessa Hebditch, Richard Angell and Deborah Gold
Leading charities have delivered an open letter to Public Health Minister Neil O’Brien and NHS England Chief Executive Amanda Pritchard, urging them to expand opt-out HIV, Hepatitis B and Hepatitis C testing in emergency departments across the country.
Delivered by National AIDS Trust, Terrence Higgins Trust, British Liver Trust and Hepatitis C Trust, the letter has been signed by more than 2,200 people who want the Government to fully fund opt-out testing in more areas in England.
New data shows that since opt-out testing launched in London, Manchester, Brighton and Blackpool in 2022, almost 1,700 people have been found with HIV, Hepatitis B and Hepatitis C in the first 10 months of this three-year programme.
Of this number, 450 have been diagnosed with HIV. These people can now access effective treatment, which means they can expect to live a healthy life and won’t be able to pass on the virus. In the same time, more than 850 people have been diagnosed with Hepatitis B and more than 390 with Hepatitis C.
The first 100 days of emergency department opt-out testing in areas classed as having very high HIV prevalence cost £2 million to the NHS. In that time however, the programme had made an estimated minimum saving of £6-8 million in care costs. This signals long-term financial savings for the NHS, who will be able to diagnose more people earlier, reducing potential hospital stays and treatment costs related to advanced illness.
Opt-out testing has also proven to be an incredibly effective tool in identifying people with HIV who are disproportionately affected by higher rates of late diagnosis, including women and people from Black African communities. For example, 45% of people diagnosed with HIV in the first opt-out testing pilots were of black African, black Caribbean or black ‘other’ ethnicity, which is more than twice as many as the nationwide average of 22% for these groups.
Oliver Brown, Lieutenant Commander in the Royal Navy, was diagnosed with HIV after being tested as part of a hospital’s opt-out testing scheme. He said: 'I was 29 when I went to A&E after coming off my bike with one of my fingers badly sliced during the fall. Had Chelsea and Westminster Hospital not been part of a routine HIV opt-out testing programme in emergency departments, I may still be unaware of my status. Routine opt-out testing in A&E departments saves lives, it saved mine and stopped me passing on the virus to others.'
The overwhelming success of opt-out testing proves the Government needs to act now to expand the programme beyond the initial four cities. There are over 30 more areas identified as having a high prevalence of HIV that are not currently able to offer opt-out testing due to a lack of national funding. Without opt-out testing taking place in these areas, there are potentially thousands of people who are unaware they have HIV, Hepatitis B and C and therefore not receiving effective treatment.
Opt-out testing must be expanded if we are to meet the ambitious targets to eliminate Hepatitis C in England by 2025 and HIV transmissions by 2030.
Deborah Gold, Chief Executive of National AIDS Trust said: 'The case for action is now clear, opt-out HIV testing in A&Es works. This crucial action is needed to diagnose everyone living with HIV and to end all new cases by 2030. It also saves the NHS money through reduced hospital stays and quicker diagnosis.
'Any delay expanding this pilot would mean missing the opportunity to diagnose hundreds of people with HIV in towns and cities across the country. Why should someone only be tested in London and not in Luton, Liverpool, Leicester or Leeds? Why should people in Bury, Bolton, Birmingham, Bournemouth and Bristol miss out, compared to people in Blackpool or Brighton? We need to make sure every has an equal chance to be diagnosed and to access treatment.'
Richard Angell, Chief Executive of Terrence Higgins Trust, said: 'HIV testing in emergency departments isn’t just finding hundreds of people living with undiagnosed HIV, it’s finding those who are extremely unlikely to test anywhere else. They’re more likely to be women, heterosexual, of Black African or Black Caribbean ethnicity and older.
'The evidence clearly shows that opt-out HIV testing is having a transformational impact and playing a key part in driving us towards ending new HIV cases by 2030. Had the Government’s own guidance been followed and it been expanded to hospitals in the next tier of HIV prevalence when launched last April, 500 additional people would know their status and now be on treatment. It is immoral to not do it in the next 40 hospitals. We need action now.'
Anne Aslett, CEO of the Elton John AIDS Foundation, said: 'The Elton John AIDS Foundation saw first-hand how opt-out testing can be a critical part of reaching those who otherwise do not access HIV testing during our three-year pilot with NHS hospitals in South London. Integrating testing into healthcare services reduces the fear and stigma of having a test and links people to the NHS care they need, which is particularly important for vulnerable communities.
'It has been wonderful to see the positive impact already for people living with HIV, as well as other blood-borne diseases and the economic case is incredibly compelling. Full-scale roll out of opt-out testing to all emergency departments will be an essential tool in the effort to end the AIDS epidemic in this country.'
Stuart Smith, Director of Community Services at the Hepatitis C Trust said: 'We are delighted to have seen this life saving testing program being rolled out across London, Brighton, Manchester and Blackpool. Hepatitis C can be fatal for patients if not diagnosed early enough and many more lives would be saved if patients could benefit from similar testing programs nationwide.'
Pamela Healy OBE, Chief Executive of the British Liver Trust said: 'Thousands of people are living with hepatitis B and C in England and are completely unaware that they have the virus because there are usually no symptoms in the early stages. If left untreated, these viruses can cause liver damage and increase someone’s chance of getting liver cancer. It’s vital that we find these people so that they can get the treatment they need.
'Testing people in emergency departments works and it’s vital that this is rolled out across the country to save lives and reduce pressure on NHS resources. It will also be a huge step towards meeting the World Health Organisation target to eliminate hepatitis B and C.'
Open letter to the Government
Dear Neil O’Brien and Amanda Pritchard,
The government has set ambitious targets to end new HIV transmissions by 2030 and eliminate hepatitis C in England by 2025. To do this, testing for HIV and hepatitis must become routine across the country. We are writing to ask that you extend the government’s opt-out HIV and hepatitis testing programme to all areas of ‘high’ HIV prevalence outside of London.
Opt-out blood borne virus testing is saving lives and saving money. In London, central Manchester, Brighton and Blackpool, more than 360 people have been newly diagnosed with HIV or re-engaged in care in just nine months. They can now access effective treatment that means they can live a healthy life and can’t pass on the virus. Many were already unwell but hadn’t been tested before.
In the same time, 727 people have been diagnosed with Hepatitis B and 315 with Hepatitis C. An estimated 40-50% of those with viral hepatitis are undiagnosed - we must find these people and ensure they can access the care they need. Opt-out testing is doing just this, on a remarkable scale.
It’s also not a coincidence that people diagnosed in emergency departments through opt-out testing are more likely to be Black African, women or older people – groups who are at higher risk of being diagnosed late. 45% of people diagnosed with HIV in the first opt-out testing pilots were of Black African, Black Caribbean or Black ‘other’ ethnicity, more than twice as many as the nationwide average of 22%. A further 35% were women and 10% aged 65 or over. This is because opt-out testing is finding people who are less likely to access a sexual health clinic or to be offered a test if they do go.
That’s why we can’t stop here. Areas outside of London that are classed by the UK Health Security Agency as having a ‘high’ HIV prevalence – including Birmingham, Portsmouth, Derby and Peterborough – should also benefit. Opt-out testing more than pays for itself, but these areas need funding to get started. An estimated £18 million is needed to expand opt-out blood borne virus testing to just over 40 emergency departments in 32 local authority areas.
In the first 100 days, the programme in the highest prevalence areas has so far cost £2 million but saved the NHS an estimated minimum of £6-8 million in care costs. It is also relieving pressure on other parts of the health service. In fact, in Croydon University Hospital, when they first started opt-out testing the average hospital stay for a newly diagnosed HIV patient was 34.9 days. After two years of opt-out HIV testing, the average stay is now just 2.4 days.
We could be the generation that ends new HIV transmissions and eliminates Hepatitis C in England. We have all the tools we need and we know what works. We urge you to seize this opportunity and make the funds available to make opt-out testing available in more areas.
Deborah Gold, Chief Executive, National AIDS Trust
Richard Angell, Chief Executive, Terrence Higgins Trust
Anne Aslett, Chief Executive, Elton John AIDS Foundation
Pamela Healy, Chief Executive, British Liver Trust
Rachel Halford, Chief Executive, Hepatitis C Trust
Sophie Strachan, Sophia Forum
Karen Skipper, Chief Executive, Spectra
Christine Ansell, Chief Executive, Wandsworth Oasis
Liz Foote, Chair, NHIVNA
Tom Doyle, Chief Executive, Yorkshire MESMAC
Gavin Brown, Chief Executive, Trade Sexual Health
Matthew Hodson, Executive Director, NAM aidsmap
Rami Ghali, Chief Executive, Brigstowe
Aydin Djemal, Chief Executive, BHA for Equality
Monty Moncrieff MBE, Chief Executive, London Friend
Sarah Macadam, Chief Executive, TVPS
Amanda Ely, Chief Executive, CHIVA
Pip Gardener, Chief Executive, Kite Trust
Professor Yvonne Gilleece, Chair Elect, British HIV Association (BHIVA)
Dr Claire Dewsnap, President, The British Association for Sexual Health & HIV (BASHH)
Paul Desmond, CEO, Hepatitis B Trust
Amdani Juma, Director, African Institute for Social Development (AISD)