BHIVA: Late diagnosis responsible for at least a quarter of HIV deaths, testing implications discussed

Edwin J. Bernard
Published: 18 October 2006

At least a quarter of the deaths reported in HIV-positive individuals in the United Kingdom between 2004 and 2005 may have been prevented if diagnosis had occurred earlier in HIV infection, according to the final results of the British HIV Association (BHIVA) mortality audit presented at BHIVA's Autumn conference, held last week in London. The results prompted a discussion regarding whether the UK should change its approaches to HIV testing.

As early as 2003, BHIVA has been voicing its concern about HIV infection not being diagnosed early enough. Although the UK Department of Health's National Strategy for Sexual Health and HIV set the target to reduce the number of previously undiagnosed HIV positive people by 50% in 2007, undiagnosed individuals comprise between one-third and one-quarter of all HIV-positive people in the UK.

Clinician delay

In 16 cases, BHIVA found that there may have been a delay in a doctor diagnosing HIV after the patient had presented with symptomatic illness. Deaths due to delay under these circumstances were more likely to occur in older, white patients who had a perceived low risk of HIV.

This is consistent with a report from the UK's Health Protection Agency (HPA) two years ago which found that GPs are not testing for HIV when individuals who think they are at low risk of HIV infection present with symptoms indicative of immune suppression.

Mortal consequences

The consequences of late testing were brought home last week when the final results of BHIVA's mortality audit were reported by BHIVA's President, Professor Margaret Johnson. She noted that HIV diagnosis came too late for effective treatment for 93 HIV-positive individuals (accounting for 24% of all deaths, and 35% of HIV-related deaths) between October 2004 and September 2005.

The number of deaths due to late diagnosis was considered to be a minimum, she said, since some of the deaths recorded by the audit that were attributed to untreatable complications of HIV involved conditions which could have been prevented by earlier treatment. It is also likely that the audit under-reported deaths that occurred without the involvement of HIV specialist services.

Late-diagnosed patients were more likely to be under 30 years old and to be of non-white ethnicity than patients dying in other scenarios.

Causes of death due to late diagnosis were most often classical AIDS-defining conditions, including PCP pneumonia, tuberculosis and other opportunistic infections.

Smaller clinics saw more late diagnosis deaths

A total of 40 HIV clinics reported no deaths among their adult HIV patients during the audit period, including 52% of those serving 100 or fewer patients. This suggests that there is no relationship between the size of the centre and the likelihood of death.

However, the audit did find that a much higher proportion of deaths due to late diagnosis occurred at smaller clinical centres (i.e. those with less than 200 patients). This may be because late HIV diagnosis is more likely to occur amongst the immigrant African heterosexual population who have been dispersed throughout the UK.

However, it may also suggest that larger clinics are more skilled at dealing with patients who present for the first-time with life-threatening AIDS-defining conditions.

Immigration status and death

The BHIVA audit found that twelve patients were known to have arrived in the UK within six months of their death; nine of these individuals died as a result of late diagnosis.

No deaths were reported to BHIVA as being due to treatment being delayed or denied because of ineligibility for NHS care.

Recommendations and discussion

At the conclusion of the audit, BHIVA recommended that it was extremely important to communicate the impact of late HIV diagnosis to non-HIV clinicians, and in particular to primary care doctors working in general practice (GPs).

BHIVA also recommended that both the Expert Advisory Group on AIDS (EAGA) and the Department of Health consider how to promote more routine HIV testing in specialist HIV/GU/sexual health settings, as well as generic health care services.

Earlier this year, the British Association for Sexual Health and HIV (BASHH) recommended that 'opt-out' testing for HIV should be offered to all patients in sexual health settings, regardless of risk factors for infection.

Last month, however, United States' health officials went much further and recommended routine HIV tests for all adults.

The controversial move was discussed by Professor Noel Gill of the HPA during his presentation on the epidemiology of sexually transmitted infections in the UK. Professor Gill told the conference: “I don't think [the US] solution is necessarily appropriate to the UK. But it is useful as a platform to reconsider how we improve HIV testing.”

Patient factors and late diagnosis/treatment

However, the audit could not assess how many people did not attempt to access HIV care due to the perception that they were not eligible and may face large bills from NHS debt-collectors - a situation that was discussed at the recent NAM symposium.

In fact, a total of thirteen patients who had received a previous positive HIV test had not been under regular care and re-presented too late for effective treatment. This included one individual who had not returned to receive the test result.

Another four patients who were diagnosed late with HIV were reported to have previously refused testing.


Johnson M et al. BHIVA Mortality Audit. BHIVA Autumn Conference, London, 2006.

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