Late Diagnosis in Parliament

posted: 05/02/2010

Watch a BBC video of a parliamentary debate about the late diagnosis of HIV in Westminster Hall held on Wednesday, which was led by David Borrow MP.

More than half the people diagnosed with HIV in the UK are being diagnosed late - seriously reducing their health and life expectancy.

NW England – the late diagnosis hotspot
The late diagnosis rate varies dramatically between PCTs in England, but NW England has the countries highest rate of late diagnosis. The figures can be distorted when the numbers diagnosed in some PCTs are very small, and North Lancashire has twice the national average rate (62% were late diagnosed), but the numbers diagnosed here are low.

Far more worrying is Manchester, because it has by far the largest number diagnosed every year in the region and last year it had the largest number daignosed late in the region last year, 54 out of 142 people: 38% diagnosed late. But this is next door to Manchester's twin city Salford, where just 23.9% were late (11 out of 46). It is difficult to understand how living on one side or the other of the River Irwell can make such a difference.

In the debate, Mr Borrow, who chairs the All Party Parliamentary Group on AIDS, also said many people with HIV were reluctant to inform their GP because of the stigma attached to the condition.

He said testing should become more routine, and that HIV awareness should be incorporated into medical training.

Health Minister Gillian Merron said the government was working to "normalise" HIV testing by making it more accessible through GPs and hospitals, and not just specialist sexual health clinics.

Late diagnosis to get earlier

Earlier this week we reported that the goalposts for late diagnosis are about to be moved so they are earlier. At present the definition for late diagnosis is when HIV is diagnosed when the CD4 count is 200 or below. It is now recommended that the late diagnosis threshold should be raised to a CD4 of 350 (by which point HIV treatment should normally be started), because it is clear that people's health and life prospects are worsened when treatment starts later than this.

Watch the video of the debate

Image source Photograph by Deryc Sands - parliamentary copyright - reproduced with the permission of Parliament

Late diagnosis report from Health Protection Agency, November 2009

Late Diagnosis Gets Earlier

posted: 29/01/2010

Late HIV diagnosis will be sooner after infection, and a new stage of HIV infection, ‘advanced HIV disease’ is proposed for the UK.

‘Late diagnosis’ is fuzzy and confusing – it means different things depending on who you talk to. The boundary line of when diagnosis is late has also been shifting over time. UK experts are now saying we need to end the confusion and bring things up to date so we all talk about and mean the same thing. They looked at thousands of people diagnosed in the UK, their CD4 counts and what became of them.

Late diagnosis matters. Many people are diagnosed late and starting treatment late means you don’t get the full benefit of HIV treatment. People diagnosed late are more likely to get HIV illnesses and die sooner than people who start treatment at the best time. And people diagnoses late are more infectious and therefore more likely to pass on HIV without realising this.

The 'new late' : any CD4 below 350
A CD4 count of 350 is when most people in the UK should start treatment. The UK researchers now say that anyone diagnosed with HIV with a CD4 count below this 350 has a late diagnosis. In the USA, guidelines for treatment now say treatment should start when the CD4 count is between 500 and 350. It is likely that the UK treatment guidelines will soon say something similar. The benefits of starting treatment sooner are becoming clear.

‘Advanced HIV disease’
A new HIV disease stage is also proposed for the UK. If a person at diagnosis has any of the things that are associated with a higher risk of death within three months – such as a CD4 cell count below 200 or an AIDS-defining illness – they should be described as having ‘advanced HIV disease’.

Late diagnosis is a blight
Large numbers of people diagnosed in Europe and elsewhere are diagnosed late. Most of the HIV-related deaths in Europe are among people who were diagnosed late.

Diagnosing more people earlier would help cut the amount of HIV-related illness and death. Cutting late diagnosis would also reduce the spread of HIV - people who are diagnosed late have high viral loads and are more infectious.

What’s late?
Investigators from the UK Collaborative HIV Cohort (UK CHIC) looked at information on 15,774 people seen between 1996 and 2006 to find “a definition that can reliably identify a high proportion of individuals who will die shortly after their HIV diagnosis”.

Overall, 10% of people had a CD4 cell count below 50 cells/mm3 at the time of diagnosis, and another 17% had a CD4 cell count below 200 at diagnosis. But for 14% of the people in the study no CD4 figures at the time of diagnosis were available.

Just under 10% of people had an AIDS-defining illness at the time of their HIV diagnosis. For 2.4% of people this illness was moderate or severe and posed a significant risk of death.

Almost 4 out of 5 people with a CD4 cell count below 50 also had an AIDS-defining illness at diagnosis. Almost half the people with a more serious AIDS-defining illness had a CD4 below 200, but 4 out of 5 people who had a serious AIDS-defining illness at diagnosis had a CD4 count below 50.

206 (1.3%) people in the study died within three months of their HIV diagnosis.

More deaths with lower CD4, advanced illness signs 

The death rates were highest for all the disease stages the researchers now propose.

If your CD4 cell count is below 200 at diagnosis the mortality rate within three months is 3%. If the CD4 count at diagnosis is below 5o, the mortality rate after three months reaches 5%.

If you have an AIDS-defining condition when HIV is diagnosed then there is a 6% chance of death within the next three months. If you have a potentially life-threatening AIDS-defining condition at diagnosis then the risk of death rises to 10% within three months.

But a lot of useful data is missing – for 45% of the people who died there was no CD4 count.

Combining CD4 cell counts and clinical characteristics proved a more reliable guide than just looking at CD4 counts, or just looking at clinical stages of HIV illness. Using both together accounted for over two-thirds of the people in the study who died.

Late and advanced disease recommendations
“We propose that any individual who presents with either a CD4 cell count below 200 cells/mm3 or a clinical AIDS event is defined as presenting with advanced HIV disease”, write the investigators.

In addition they suggest that patients diagnosed with a CD4 cell count below 350 cells/mm3, or who develop an AIDS-defining illness within a month of diagnosis should be classified as having their HIV diagnosed late.

The investigators caution that a reliance on CD4 cell counts alone would not identify a substantial number of patients who have advanced HIV disease and a high risk of death at the time of their diagnosis. They write, “these patients may present and die without having their CD4 cell count measured”.

They hope that their proposed definitions will facilitate cross-country comparisons and help identify patients with a high risk of advanced disease at the time of their HIV diagnosis.

Source and Journal reference

French Gay Men – Half Diagnosed Recently Infected?

posted: 21/12/2009

Over the last five years, half of the gay men diagnosed with HIV in France were infected in the six months before their diagnosis, researchers report in Eurosurveillance. In the UK, a study in Brighton gave a similar result in 2007, but more recent work suggests the true UK figure is much lower – about 1 in 5 gay men diagnosed were recently infected.

The French study suggests that the rate of new infections among gay men in France is very high. However it could also be due to high rates of testing among some gay men.

After many years in which only AIDS diagnoses had to be reported in France, recently there have been big improvements in the French public health HIV reporting system. Since 2003, HIV diagnosis must be reported. A test to identify recent infections is also now usually performed as well.

Recent infections tests

Testing for recent infections (known as STARHS or incidence tests) looks for antibody markers that change depending on how long ago the infection happened.

There are now around 6,500 - 7,500 people newly diagnosed with HIV every year in France. [In the UK, in 2008, 7298 people were newly diagnosed, 2,760 of them gay men.] The numbers of gay men in France diagnosed with HIV has increased from below 2,000 in 2003 to around 2,500 for each of the last three years.

Epidemiologists analysed the available data on gay men diagnosed between 2003 and 2008, although quite a lot of information is missing. Recent infection results were only available for 4,819 gay men.

The average age for gay men diagnosed was 37. Doctors judged that around 1 in 5 gay men were in the primary infection stage. The test for recent infections showed that in fact 48% of men had been infected in the previous six months. This figure remained stable between 2003 and 2008.

More frequent testers
Men who had taken at least three HIV tests in their life were four times more likely to be diagnosed with recent infection than men who were diagnosed on their first HIV test. Being diagnosed in recent infection was more common both for men with French nationality and those with higher socio-economic status.

Younger men more likely to be recently infected, older men to be diagnosed late
Moreover, recent infection was more common for younger men, with 57% of those diagnosed aged 15-29 having recent infection, compared to 30% of men aged 50 and over. In line with this, whereas 11% of all gay men were diagnosed very late (with an AIDS-defining illness) this figure rose to 27% for those men aged over 50. The numbers of men diagnosed late fell during the study.

Older men were more likely to take a test because of symptoms, but younger men usually tested because of their risk-taking.

The authors note that the high number of recent infections in gay men probably reflects both testing behaviour and HIV incidence. They plan to publish a study estimating incidence rates in 2010.

Describing their data as worrying, they comment: “Prevention campaigns remain crucial, but they do not seem sufficient to contain sexual risk behaviours among MSM in France, despite the wide availability of screening, condoms and information and the fact that MSM represent a highly educated sub-population”.

In the United Kingdom, the Health Protection Agency (HPA) is also rolling out the use of recent infection tests. Whereas a 2007 study from Brighton estimated that half of new diagnoses in gay men were recent infections, the HPA’s preliminary results for 2008 suggest it is much lower - one-in-five for gay men, and one-in-ten for heterosexuals.

Source

Reference
Semaille C et al. Recently acquired HIV infection in men who have sex with men (MSM) in France, 2003-2008. Euro Surveill 48: 5-8, 2009.
 

Campaign - Cut Late Diagnosis

posted: 03/12/2009

Late diagnosed HIV is bad news in NW England – we have England’s worst regional rate for late HIV diagnosis. Across the NW an average of 35.9% are diagnosed late, compared with the national average of 31%.
 

It matters because up to a third of people with HIV are diagnosed late, after the immune system has already been damaged by the virus. Late diagnosis makes

• treatment more complex 
• people more ill,
• life significantly shorter - and
• accidental HIV transmission more likely, because they don't know they have it.

e-mail your PCT

We're asking you to write to your PCT and encourage them to cut late diagnosis of HIV, so people stay healthy for longer.

Postcode to email easily
If you enter your details and postcode, the SHout-Loud website creates a custom letter about late diagnosed HIV in your own PCT. For Manchester, it tells the PCT that 38% are diagnosed late when the national average is only 31%, and that means a lot of people are diagnosed late here.

Click on the link below to take part, and remember to check the box to join ‘SHout Loud’ so you receive updates on other campaign actions.

Bit by bit, we can improve sexual health locally.

Click here to write to your local PCT

It may take a few moments for the e-mail letter to appear – please be patient!
 

Why bother?
More and more decisions about health services are now taken at a local level, and decision-makers have to take the views of local communities into account. The SHout Loud (Sexual Health out loud) aims to help you affect local decisions and improve sexual health in our community.
 

NW England – the late diagnosis hotspot
The late diagnosis rate varies dramatically between PCTs in NW England, and the figures are often distorted because the numbers diagnosed in some PCTs each year are very small, but North Lancashire has twice the national average rate (62% late diagnosed).

Late diagnosis figures for each Primary Care Trust in NW England

Worrying is Manchester ,because it has by far the largest number diagnosed late last year, 54 out of 142 people, 38% late. But this is next door to its twin city Salford, where just 23.9% were late (11 out of 46). It is difficult to understand how living on one side or the other of the River Irwell can make such a difference.
 

Undiagnosed - 'Extraordinary Failure'

posted: 01/06/2009

The UK's policy on HIV is branded an 'extraordinary failure' because of the number of people who don't know they have HIV. The Health Protection Agency estimates 1 in 3 don't know - around 21,000 people. One of the country's leading medical journals, The Lancet has condemned this roundly.

In its editorial, the journal note that around 21,000 people are thought to be unaware they are HIV-positive and that an increase in infection rates has been seen among both gay and straight people.

The Lancet argues that the Department of Health recommendation for a stronger public health response have been largely ignored, despite one former senior government health official warning that the problem is an “appalling statistic”, and a “serious epidemiological issue”.

Ignored, or Under-Funded?

George House Trust doesn't agree that the problem is being ignored. People working in the sector, commissioners, clinicians, community sector organisations, know exactly what the problem is and have many good ideas for dealing with it. But HIV prevention and sexual health rarely get the priority and attention they need from many PCTs at board level where spending is decided.

We reported recently that the NHS has a £1.7 billion surplus in the bank. We urged that some of this should be invested in prevention and testing.

Unfortunately, the multiple reorganisations of the NHS over the last dozen or more years have hindered rather than helped; and the both Conservative and Labour government's obsession with targets means that those issues get the cash and the attention. We don't think much will change, no matter how hard we try, unless the department of health sets tough targets for PCts and hospital trusts. The target for making sure the testing and detection of HIV among pregnant women has made a huge difference.

Targets are clumsy and often distort what happens - people work to achieve targets, and you are more likely to reach the target if you go for the easiest cases first. This often leaves the most vulnerable at risk or neglected. But targets seem to be the kick up the bum that works. You can quote statistics until you are blue in the face and all too often they are allowed to echo without effect on spending priorities.

Problem well known and condemned

For example at the national gay men's sexual health conference held this Spring in Brighton, we reported the powerful speech at the opening of the Conference, by Ford Hickson. He made the point that gay men's HIV prevention (which includes reducing steeply the numbers who are undiagnosed) is not exactly failing, but simply not up to the job. The resources we have are simply hopelessly inadequate for the scale of the problem and the pressures we face.

The Lancet advocate a "purposeful, but not coercive, policy of HIV testing for all men and women aged 15 to 59 years".

We are not sure this makes best use of scare testing resources - this means testing 40-50 million people, and the overwhelming majority will not have HIV. HIV is very substantially concentrated in England among two communities - gay men and African migrants from sub-Saharan Africa. Testing everyone would pick up small numbers of other people. The UK national testing guidelines are clear:

• People should be offered and encouraged to accept HIV testing in a wider range of settings than is currently the case.
• People with specific indicator conditions should be routinely recommended to have an HIV test.

The Guidelines are to focus testing in areas of highest prevalence - in the North, that is the populations of Manchester, Salford and Blackpool. Other target cities are London and Brighton.

The Lancet ended: "There is no credible strategy to diagnose and care for those living with, but unaware of, HIV in Britain today. This is an extraordinary failure in public health. The UK's policy is 'out of sight, out of mind'. This failure needs an urgent response."

George House Trust agrees on the urgency and that it's a public health failure. But the tools and powers necessary to change this are in the hands of the Department of Health. The HIV sector has been pleading for years for them to be used and money invested quickly where it will make most difference. Maybe this Lancet editorial and the accompanying article will wake them up.