Emergency department opt-out testing is revolutionising HIV and hepatitis diagnosis in England

The British HIV Association (BHIVA) conference in Gateshead this week heard the results of the first year’s rollout of opt-out testing for HIV and hepatitis B and C for all patients attending emergency departments in London and other areas of high prevalence of the three blood-borne viruses.

The programme was launched on World AIDS Day 2021 when the Department of Health committed £20 million over three years to expand opt-out HIV testing in hospital emergency departments. The initiative was expanded to include testing for hepatitis C as part of NHS England’s hepatitis C elimination project which, as the conference also heard this week, is producing very positive results. 

Hepatitis B was added even though, as Ian Jackson, Commissioning Director for Specialised Commissioning at NHS England told the conference, there is currently no money for the hepatitis B clinical pathway. But he said that “the testing programme has such huge implications for the directing of other resources to it” that hepatitis B was included in the expectation that funding would be provided.

Jackson and other speakers communicated a sense of excitement about the testing programme. “In 20 years working for the NHS I have never participated in a programme that was mobilised with such unanimous support and which started producing positive results so fast,” he said.

The emergency department (ED) testing programme involved collaborative, multidisciplinary implementation between a very wide range of different stakeholders, he said – including HIV, hepatitis and ED physicians; patient groups and local support organisations; laboratories that needed to be able to find the extra capacity; data and monitoring departments; and even designers and editors of ‘patient-facing’ material.

The process involves prominent posters at the entrance to ED departments informing attendees that, if they are having a blood test, it will include testing for the three blood-borne viruses unless they specifically opt out. Blood will be taken for the three tests, initially separately, but now a three-in-one testing vial that combines a fourth-generation HIV antibody/antigen test, a hepatitis B surface antigen test (indicating chronic infection if positive), and a hepatitis C antibody test (indicating whether the person has ever had the virus). If the hepatitis C antibody result is positive, a PCR test for hepatitis C RNA (indicating chronic infection if positive) automatically happens too. 

Overstretched ED staff are not involved in giving results to patients. The HIV or hepatitis department gets in touch with anyone who has a reactive or indeterminate result; those with negative results are not contacted.

Opt-out screening: the first results

Dr Rachel Hill-Tout, Clinical Lead for the ED opt-out testing programme in London, presented the first nine months of results. Apart from a few hospitals that found local money to start early, the main programme started at the end of March 2022 with 20 EDs testing for HIV, two for hepatitis B and six for hepatitis C.

In the first wave of implementation, all 28 EDs in London took part along with three Manchester hospitals, the Royal Sussex Hospital in Brighton, and Blackpool Victoria Hospital. 

As of December 2022, 33 EDs were testing for HIV, 18 for hepatitis B and 23 for hepatitis C. Others are waiting to start. “Speed was of the essence in making this happen," Jackson said. "I have been in the NHS long enough to know that if programmes are delayed, the funding for them tends to get diverted towards other priorities.” 

Up to the end of last year 1,159,875 tests for the three conditions had been performed in the opt-out programme. Of these 57% (665,746) were tests for HIV, 18% (213,518) for hepatitis B and 24% (283,571) for hepatitis C.

These disparities are only due to hepatitis testing starting later and Steve Hindle, the opt-out testing project’s manager, told aidsmap that with the adoption of the three-in-one test the numbers should equalise.

There were 3664 confirmed positive tests for HIV (after weeding out 721 false positives), 1178 for hepatitis B and 437 for hepatitis C. This equates to 0.55% positive results (one in 181 tests) for both HIV and hepatitis B; in the case of HIV, this closely matches the average population prevalence in the regions served. For hepatitis C the prevalence was 0.17% or one positive result in 437 tests.

Most patients testing HIV positive, however, were already in care. There were 282 new diagnoses of HIV – 7.7% of positive results – and 144 (3.9%) were people who had dropped out of care. The definition of ‘out of care’ is that patients had not had an HIV care appointment or test for at least 15 months, but many had not been seen for years; these patients were themselves a major topic of this year’s conference.

This means that 0.04% or one in 2360 patients tested for HIV was a new diagnosis. If patients out of care were included, 0.06% or one in 1563 was either newly diagnosed or re-identified. 

Fewer patients testing positive for hepatitis B or hepatitis C had previously been diagnosed: 64.5% of positive hepatitis B tests and 73% of positive hepatitis C tests were new diagnoses. Adding in the few patients who had dropped out of hepatitis care, 73% of hepatitis B and 86% of hepatitis C patients testing positive were not in current care. This means that one in 259 patients tested for hepatitis B and one in 756 tested for hepatitis C were either new to care or re-identified.

Find out more: HIV testing

The proportion of patients testing newly positive or re-identified who were then linked to care was lower. Sixty-four per cent of people testing HIV positive were linked to care (of whom 87% accepted a referral to community support). While 58% of those testing positive for hepatitis C linked to care, only 30% of those with hepatitis B did so. 

Nonetheless, the increase in the absolute number of tests performed, and the number of people newly diagnosed, will lead to an overall increase in the proportion of people receiving care for all three conditions. 

Before the programme began, 114,000 of over 2.5 million HIV tests performed in England during 2019 were in emergency departments (4.5%).  At the current rate of testing, the first year of the ED scheme should see around 900,000 HIV tests performed, meaning that the total number of HIV tests performed in England annually will increase by a third. Nearly as many of these will be in ED as in sexual health clinics, and many of them will be done for people who would never attend sexual health services. The ED scheme is forecast, within its currently funded three years of operation, to double the number of HIV tests performed annually.

Manchester: cases and issues

Focusing in on one region in the ED testing scheme, Dr Orla McQuillan is the lead for the project in Greater Manchester, where it is running at three hospitals: the Royal Infirmary, the North Manchester General and the Wythenshawe (a fourth, Salford Royal, is due to start). The Royal Infirmary secured some local pilot funding which enabled it to start ED HIV testing from December 2021.

Within Greater Manchester, the boroughs of Manchester and Salford have HIV prevalence of over 0.5%, which puts them in the 'very high' category along with the majority of London boroughs and Brighton and Hove. Five of the other eight Greater Manchester boroughs are in the ‘high’ category (prevalence over 0.2%).

Since December 2021, the ED testing programme has diagnosed 48 new people with HIV out of 113,148 tests (0.04% or one in 2357 patients). The proportion of all positive tests which were either new diagnoses or people who were out of care was 15%, higher than the national average of 11.6%.

An analysis of the 24 people diagnosed up to the end of last year found seven people with AIDS-defining opportunistic infections. “A lot of the others diagnosed had mental health issues or came in due to drug toxicity,” Dr McQuillan said.

“A high proportion of the people we are diagnosing didn’t suspect they had HIV and would never visit a sexual health clinic," she continued. "A couple of others who did attend sexual health services had acute infections diagnosed that would have been missed for months if they had not been tested in ED.”

McQuillan outlined a few cases:

• One of the acute infections was a young British-Asian gay man who had been taking PrEP but whose use had become intermittent and who last attended the PrEP clinic a year previously. He had attended the ED due to severe gastrointestinal symptoms that turned out to be due to acute HIV infection. He had a viral load of 6 million which would have been missed had he not been tested.
• A 49-year-old man in a 15-year monogamous heterosexual marriage, whose worsening ‘COPD’ turned out to be an atypical presentation of the AIDS-related pneumonia PJP. His viral load was 13,100 and his CD4 count 172. He had no suspicion he had HIV and was ‘shocked’ when given his diagnosis over the phone. His wife was HIV negative.
• A Black British woman whose severe encephalitis and hydrocephalus turned out to be a manifestation of the AIDS-related condition toxoplasmosis. Diagnosed on the ward, she turned out to have a CD4 count of 5 along with a viral load of 30,000. She had no apparent HIV risk factors and had never attended a sexual health clinic. After initial medication to stabilise her life-threatening condition, she received HIV treatment and is now virally suppressed.  
• An example of someone who had dropped out of care was a woman originally from Zimbabwe, presenting at ED due to abdominal pain, whose last attendance at sexual health services had been to have a contraceptive implant removed a year previously, as she hoped to become pregnant. She had been self-medicating with stockpiled antiretrovirals, but inadequately, and had a viral load of 651. She had not responded to follow-up calls from sexual health services. “But, in common with some other patients out of care, she did respond to a call after ED attendance,” Dr McQuillan commented. Her overriding health concern was to become pregnant but her re-diagnosis enabled her to discuss her HIV with her partner – who was HIV negative. She received HIV treatment and the couple were referred to fertility services, but she discovered she was pregnant before needing to attend.

The ED testing is not just picking up on HIV cases. Professor Yvonne Gilleece, chair of BHIVA, commented on the first two people diagnosed with hepatitis C in ED testing at her hospital in Brighton.

“They were both women, one aged 52 and the other 82 – neither with any risk indicators. Both received direct-acting antiviral drugs; one has a confirmed sustained viral response (cure) and we are awaiting confirmation of the other.”

Confidentiality

Another issue was the time and resources spent on testing patients who, it turned out, were already diagnosed and in care. Patients attending for HIV care are not paired with their NHS number, though most are identifiable with a Soundex code, which is generated from the surname. There was discussion of whether it is still too early to introduce NHS number pairing as many patients have not shared their HIV status with their GPs or may have reasons for anonymity such as stigma, violent relationships, immigration status or fear of safeguarding issues. Positive diagnoses within ED are not communicated to GPs but are retained within hospitals’ internal databases.

Because of this problem, the UK Health Security Agency has started notifying hospitals of patients testing HIV positive who do not appear to be on the confidential HIV and AIDS Reporting System (HARS) database, though this does not rule out all situations such as patients changing addresses and phone numbers. 

Another issue, as exemplified by one of the cases above, is that it was agreed that patients could be notified of a positive result by phone, and some were shocked to receive an unexpected diagnosis. Although all ED testing schemes involve referral and support agreements with local community organisations, the ideal situation would be to have peer navigators embedded within or available on call to the Emergency Department.

Who is still not being tested, and why

Finally, even though the ED programme is supposed to be universal, not everyone is being tested, with 57% coverage/uptake for HIV tests in Rachel Hill-Tout’s figures. Some of this is due to patients declining a test but more is due to healthcare staff not doing the test.

Dr Cassandra Fairhead of London’s Royal Free Hospital interviewed 20 Emergency Department staff working there and at Barnet Hospital about their first four months’ experience of operating ED testing, from April to July 2022. There were 33,388 attendances by patients that were opportunities for screening during that time. Tests were taken 54% of those times at the Royal Free and 64% of attendances at Barnet.

Some reasons for not taking the test were simply due to the enormous time and resource pressure EDs operate under. Attendances at the busiest time, between 5pm and 11pm, were only half as likely to receive screening at either hospital. Despite the test now being hopefully as routine a part of ED attendance as a blood pressure test, the extreme work pressures sometimes squeezed it out. “To be honest, the red top is the least prioritised,” one ED nursing assistant said of the sampling tube. Others were still worried that informing the patients of the nature of the test would involve discussion they didn’t have time for.

Other reasons were more to do with staff’s view of patients. At the Royal Free, patients aged 80 or more were less likely to be tested. One ED nurse commented: “The elderly always say no…90 year olds think ‘what’s the point?’”

Perhaps of more concern is that at Barnet, women were 20% less likely to get tested than men – perhaps still being seen as at lower risk. Surprisingly, at the Royal Free, people of Black ethnicity were 14% less likely to be tested. Language barriers and patient factors such as fear of stigma were felt to be part of the explanation here, but this may also be an issue of staff confidence and training. “If they say no, I don’t want to push it,” said one ED assistant.

In short, the new screening regime was acceptable to patients and staff, with good uptake, but interventions to equip staff with the time and confidence to discuss screening, especially with patients of minoritised backgrounds, may improve uptake further.