Tales of the late diagnosed

This article originally appeared in HIV Treatment Update, a newsletter published by NAM between 1992 and 2013.
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Gus Cairns talks to four people who were diagnosed with HIV only just in time to save their lives – and the daughter of one who wasn’t.

Now that antiretroviral therapy (ART) works so well, we can sometimes forget how remorseless a virus HIV can be if left untreated. Yet you don’t have to go to countries with poor treatment access to see what AIDS looks like. Even in the UK, people are still turning up at hospital desperately ill, with no immune system, and with severe pneumonia, cancers, wasting, dementia... everything we used to associate with HIV in the bad old days.

Why? Late diagnosis. One of the aims of the recent National HIV Testing Week was to try and bring down the number of people in this situation, the late-diagnosed. These are the people tested for HIV far too late, when they have turned up somewhere – often in hospital – with CD4 counts in single figures. Sometimes they may have been scared to test, but often it’s because they never suspected they had HIV. Some have avoided healthcare services, but too many have known something was badly wrong and been tested for everything but HIV.



Any lung infection that causes inflammation. The infecting organism may be bacteria (such as Streptococcus pneumoniae), a virus (such as influenza), a fungus (such as Pneumocystis pneumonia or PCP) or something else. The disease is sometimes characterised by where the infection was acquired: in the community, in hospital or in a nursing home.


A type of cancer that starts in the tissues of the lymphatic system, including the lymph nodes, spleen, and bone marrow. In people who have HIV, certain lymphomas, such as Burkitt lymphoma, are AIDS-defining conditions.


Refers to the mouth, for example a medicine taken by mouth.

acute infection

The very first few weeks of infection, until the body has created antibodies against the infection. During acute HIV infection, HIV is highly infectious because the virus is multiplying at a very rapid rate. The symptoms of acute HIV infection can include fever, rash, chills, headache, fatigue, nausea, diarrhoea, sore throat, night sweats, appetite loss, mouth ulcers, swollen lymph nodes, muscle and joint aches – all of them symptoms of an acute inflammation (immune reaction).


A shortage or change in the size or function of red blood cells. These cells carry oxygen to organs of the body. Symptoms can include shortness of breath, fatigue and lack of concentration.

Most pull through, but some don’t. We talked to a number of people diagnosed very late to see if there were any common factors in their experiences.

But first, how much of a problem is late diagnosis among people in the UK?

A pricey problem

“Late diagnosis is dangerous – and expensive to manage,” says Dr Ian Cormack, HIV consultant at Croydon University Hospital in south London.

“A year on antiretroviral therapy currently costs about £6000. The care bill for a recent patient who spent six weeks in our intensive care unit was well over £200,000, which would have been avoided if they’d tested a year before.”

In his experience, for some groups, late diagnosis remains the rule rather than the exception. “I’d say at least two-thirds of my current patients here had a CD4 count below the treatment-initiation limit of 350 cells/mm3 at diagnosis.

“My patient group here is two-thirds black African and I do know people from that group who have tested late either because they think HIV is still a death sentence, or are worried about their immigration status.”

But, he says, the people who really do scrape through – and the hospital had no avoidable HIV-related deaths last year, so scrape through they do – are the people who don’t fit the typical ‘high risk’ demographic, the 13% of his patients who aren’t openly gay men or black African people.

“The white heterosexuals are the most likely to turn up actually with AIDS-related symptoms. Them, and black Caribbeans, though we see a number of Asians too. They are often very ill and often have difficulties adjusting to their diagnosis, feeling especially isolated and stigmatised.”

The bisexual man: Brian

One such person is Brian*. The north Londoner, diagnosed at Christmas in 2007, runs his own business as a wholesaler.

He started to worry “because I was looking too healthy. I tend to lose weight in the summer and pile it on again in the autumn. That year, though, I hadn’t had to go on my usual October diet and at first was pleased.

“But something started to scratch at the back of my mind. I didn’t feel ill, exactly. It was more that I felt vulnerable – as if I needed wrapping up and looking after. I started having dark thoughts too, not specifically suicidal but morbid. ‘If I accidentally stepped in the garden pond it would be all over’ – that sort of thing.

“I went back and forth to the GP a few times and they did tests for diabetes, liver function, cancers. All came back blank. Then I started losing my appetite and my GP became concerned: he could see I had unusual weight loss. Looking back, I’m wondering why he didn’t just test for HIV too.

“Just after Christmas, I got a chest infection. The GP took one listen at my chest and said ‘Right, we have to do something’: the next thing, I was in the local A&E department.

“The moment I was there I felt better psychologically; I was being looked after, as I’d wanted. The hospital doctor said ‘We need to broach the subject of your private life’, and I said ‘Go for it’. I realised it was important not to hold back.”

And so he found himself talking for the first time about his bisexuality and his late-night cruising on London commons. He was married with two teenage children, a school governor, well known in the local community. He emphasises that he made a conscious decision not to let fear of gossip stop him telling the truth.

“The doctor was the daughter-in-law of one of my customers. I decided to trust that she’d be professional. I didn’t want a stranger telling my wife, though. So I said ‘Take the day off work’ and told her. I considered saying I’d had a drug problem but decided there was no point in lying. She was devastated, but with the help of counselling at the Terrence Higgins Trust, we pulled through.”

If there’s a message he’d like to give to others, it’s to update their knowledge about HIV. “In my line of business there are quite a lot of bi guys and they’re the ones I always hear myths from. ‘HIV is still a death sentence’, ‘it’s mutating and is resistant to all the drugs’, and so on. It’s these kinds of myths that stop people from testing.”

What late diagnosis does

Late diagnosis kills. A British HIV Association (BHIVA) audit in 20061 found that 25% of all deaths reported in people with HIV were due to late diagnosis. People diagnosed with a CD4 count lower than 350 cells/mm3 have ten times the risk of dying after diagnosis compared with those over the threshold – a 4% risk in the first year compared with a 0.4% one. Most deaths occur within the first three months after testing positive, and most in people with very low CD4 counts (under 100 cells/mm3).

The most recent data from the Health Protection Agency (HPA)2 show that nearly half (47%) of people with HIV are being diagnosed with a CD4 count of 350 cells/mm3 or under, which lays them open to increased risk of illness, and a quarter (26%) with fewer than 200 cells/mm3, the point at which AIDS-related conditions start to become much more likely.

About 35% of gay men, but 56% of women and 64% of heterosexual men, are diagnosed with a CD4 count under 350 cells/mm3. Being in a high-prevalence group makes little difference – African people are just as, or even more, likely to test late, with 61% of African women and 68% of men doing so. Older people leave it later to test than younger: 61% of the over-50s diagnosed in 2011 had a CD4 count under 350 cells/mm3, compared with 48% of the under-50s.

When it comes to women, pregnant women are diagnosed earlier. This isn’t because they present themselves for testing. It’s because pregnant women form the only group in the UK which is universally and routinely tested for HIV unless someone specifically asks not to be. A third of all HIV tests in the UK are performed at antenatal clinics.

The biggest contrast is in the group who test very late. The proportion of gay men who are diagnosed with a CD4 count under 200 cells/mm3 – which in the US is a definition of AIDS – is 16%, but in heterosexual men it’s as high as 43%.

The good news is that the proportion of late testers has been slowly declining overall, most notably in gay men: in 2002 48% tested late and in 2011, 35%. The proportion of late testers in heterosexuals has only gone down relatively slightly, from 67 to 60%. In the case of gay men, the challenge now is not to get them to test, but to test often: the HPA recommends gay men should test for HIV at least annually, and every three months if they have multiple partners, but found that in fact two-thirds of gay men who’d had a test at an HIV clinic had, two years later, not returned for another one.

The traveller: Tom

One interesting group who are increasing as a proportion of the HIV-positive population, and who may test particularly late, are UK-born people who acquire HIV while on holiday or working abroad. The latest HPA report highlights that some 15% of UK-born adults with HIV fall into this category: they are more likely to be older, heterosexual and report contact with a sex worker. And they may test especially late as they are seen, both by doctors and themselves, as falling out of classic risk categories.

One was Tom, in his 50s from Leicester. He’s a reminder that late diagnosis may not only involve danger for the person who tests: in Tom’s case, although he too got sick, what got him to test was the near death of his young son.

He believes he became infected with HIV abroad: he had been going to Thailand twice a year and sleeping with women there. Eventually, he found a wife there – “I could see she wasn’t like the other girls” – and they have been married for eleven years. He doesn’t know if he infected his wife or vice versa.

He started off having jaundice and gallstones for no apparent reason, as well as kidney problems, and then developing what was thought might be anaemia. “I had every test under the sun. I even went to a haematologist who did a general blood cell screen, as I’d had anaemia before. I even asked him if they might do an HIV test. He just said ‘I don’t think we need to, you don’t fit the profile’.”

If they’d thought to test his CD4 count, they’d have found out: Tom’s was 53 cells/mm3 when finally diagnosed and he was in the early stages of PCP, a type of pneumonia.

By that time, however, his young son, who is now six years old but was then three, had already spent eight weeks in hospital with pneumonia and what doctors thought was lymphoma.

“I can’t help feeling guilty. For me and my wife, it was one thing testing for HIV, for him another, he’s just a kid. We feel strong as a couple and my beliefs support me [he has converted to Buddhism] but I think I am going to need support when he starts asking questions about why he has to take medicines twice a day.

“I just wish they’d include HIV among the standard tests they do,” Tom says. “I now hate it when they say ‘We’ll run some tests’. I want to know what tests? And why? What assumptions are they making? There are guys in my office who have taken more risks than me but are too frightened to test because of the stigma attached. It would be a good message if doctors just regarded it as something routine.”

The fast progressor: Annie

Not all ‘late testers’ are older or have actually been infected for a long time. About 7% of people with HIV are ‘fast progressors’ who, for reasons that are still unclear, experience continued high viral replication after acute infection that takes their CD4 count down to below the danger level of 200 cells/mm3 within two years.3

Annie was diagnosed in 2008 with a CD4 count of ten cells/mm3 and a viral load of six million copies/ml. She knows she couldn’t have been infected before 2006. She had had several older boyfriends including one from the Caribbean, a group among whom, says Ian Cormack, “we find late diagnosis is common. Many are reluctant to test and struggle to accept their HIV diagnosis.”

Employed in the finance sector, she worked very hard, but played hard too. She used to go to a central London hospital for regular check-ups for other sexually transmitted infections (STIs) “and never had one. So I reckoned if I’d never had an STI I couldn’t possibly have HIV and, although they always offered me a test, I always declined.”

She realised something was wrong when the ‘play’ bit of her life had to go because of increasing fatigue: “By 9pm, you couldn’t have got me off the sofa with a JCB.” A couple of liver function tests showed worsening results; she developed oral thrush and then pneumonia. She ended up in hospital for three months: “I missed the summer.”

She thinks there were a number of opportunities for testing during the two years between being infected and testing HIV positive.

“I think the public health messages have done a lot of damage. The early ones caused a lot of fear and still stick in people’s minds – people quote them who were not even around when they first appeared – and the later ones made people think you could only have HIV if you were African or gay. A close relative was a staff nurse in A&E for years, and even she said ‘You can’t have HIV, you don’t have the lifestyle’.”

Standardising testing

People like Brian, Tom and Annie are lucky to have made complete recoveries. Ian Cormack says: “Thirty per cent of my outpatients have some sort of long-term health consequence from testing late.”

He wants to see the HIV test offered in a much wider variety of areas. His team at Croydon University Hospital, including doctors David Philips and Ali Elgalib, persuaded the hospital’s consultants and chief executive to start offering HIV testing as standard to all medical admissions from July 2011.

“We made the point that standardising HIV testing doesn’t just protect patients, it protects the hospital as part of good clinical care,” he says.

“We regularly visit the emergency room to motivate staff to offer the test and train nurses to do it. We conducted an acceptability study among A&E patients and 84% said they’d happily take an HIV test, 91% if it wasn’t a blood test. It’s the doctors, I find, who are worried. They don’t know how to say ‘HIV test’ to the patient.”

One thing that would help, he thinks, is “to change from the culture of targeted testing”.

Targeting made sense when the point needed to be made that gay men and African people suffered disproportionately from HIV and needed appropriately more attention, more resources – and more tests.

“The problem with targeting now,” says Ian, “is that it encourages a collusion between doctor and patient not to mention HIV. The patient doesn’t want to disclose, and the doctor doesn’t want to ask.”

Although he is pleased at the progress routine HIV testing has made in his hospital and in the community, he says that GPs’ surgeries are where we will make the real gains.

“But GPs need support. We may well feel like saying ‘Look here, this chap was turning up for two years with HIV-related symptoms, why didn’t you test him?’ but we don’t want them getting defensive. We need to work out how HIV testing can be integrated into GPs’ models of care. GPs need support from the top: HIV testing needs to be prioritised and incentivised; it needs to be part of the package of incentives included in schemes like QOF” [the Quality and Outcomes Framework, which rewards GPs for achieving certain health targets].

We have a long way to go in this direction. An audit conducted by the British HIV Association in 2010 found that while the proportion of people who have been diagnosed with HIV in so-called ‘non-traditional settings’, such as A&E, has increased by 14.4% since 2003, the number diagnosed by their GP only increased by 6.4% during the same period.4

The older woman: Kate

Someone whose GP could have tested her earlier was a person I could not interview, because she died of AIDS in January 2011. Rose Matthews’ mother Kate was 59 when she died: “four stone, confused, scared, and not my mum any more. By the end she couldn’t recognise her reflection.”

Rose has made an official complaint about her doctors’ failure to test Kate Matthews for HIV. Her complaint, and the GP’s reply to it, make tragic reading. Kate first started to notice symptoms in August 2007 and her life could have been saved if she had been given an HIV test at any time in the next three years.

She had multiple problems suggestive of HIV: shingles, loss of appetite, swollen lymph nodes, weight loss, cognitive decline – all presented at some point.

This was not a passive or ignorant patient, either. Kate kept a diary detailing her mysterious illness and her visits to the doctor, and at one point even paid for a private scan, which returned a picture of multiple swollen lymph nodes.

The GP practice made a provisional diagnosis of lymphoma, and stuck to this even though a specialist’s report said there were no signs of it: it appears the reason Kate was not given an HIV test was because she did not ‘fit the profile’. She eventually tested HIV positive in the hospital where she died, too late for her to be treated and saved.

“I feel there should be an HIV screen for all new GP patients everywhere,” says Rose (Kate did not live in a high-prevalence area, where this is now recommended). ”My mum probably had had HIV for ten years: if in 2008 her GP had offered her a test, she’d still be here now.” She is now actively campaigning for a revival of general HIV-awareness campaigns, not least for GPs.

The non-presenter: Ekow

By this time you may be feeling scandalised that so many people are still developing serious illness and some dying, just because healthcare workers (and patients) don’t think to test for HIV.

That’s certainly part of the cause, but the last late-presenter I interviewed, and perhaps the one who had the closest brush with death, reminds us that there may always be a core of people undiagnosed with HIV – and he also taught me that I am not immune from making assumptions about someone’s sexuality and risk.

Ekow is a 43-year-old man from west Africa; he’s been in the UK for 20 years, though he periodically travels back home. A quiet, unassuming man, when asked whether he feels the health services missed opportunities to test him for HIV, he says “No, to be honest.

“I am registered with a GP but I’m one of those men who never sought out health care, like men who never ask directions. Besides, apart from the odd hangover when I’ve had one too many at a club, I’d never been ill. There could be a lot of people in my situation, and some people inevitably will have to fall sick before they get tested.”

Last year he started losing weight rapidly and also developed oral thrush. “My friends were saying, ‘There’s something wrong man – you not eating?’

“But it never occurred to me I could have HIV. I’m not the kind of guy who’s jumped from woman to woman.”

One day he woke up and found he couldn’t walk. “I was like a little old man.” He eventually struggled into A&E where they took one look at him, admitted him, and tested him for HIV. “I remember, all the doctors and nurses gathered round my bed and one said ‘You’ve got HIV’. I nearly died then!”

He nearly did. He had a CD4 count of four cells/mm3 and, when put on antiretroviral therapy, he had the severe, paradoxical complication called IRIS (immune reconstitution inflammatory syndrome), which happens when the immune system ‘reboots’ from virtually nothing and and starts over-reacting to the original infection. He developed terrible abscesses in his neck and throat which required a tracheotomy and is still in the situation where he takes one Atripla pill to control his HIV but a handful of other ones to treat opportunistic infection. However, his CD4 count is now 120 cells/mm3 and on the way up.

When I ask if he has a partner, I realise I’ve made an interesting assumption myself: “No,” he says, “not right now. I did have a guy back in Africa I used to go back and visit...” Up till then I’d been assuming I’d been talking to a heterosexual man. If I can make that mistake, it’s hardly surprising if healthcare workers continue to miss cases of HIV, sometimes with fatal consequences, through trying to guess, on the basis of appearance and what people are prepared to admit, whether they should get tested or not. As Ian Cormack says, targeting is valuable to persuade those at highest risk to test, but we need to normalise it across wider areas of health care to find and care for the people who don’t fit the picture.

*Names have been changed.

  1. British HIV Association (BHIVA) Mortality Audit 2005-6. See http://bit.ly/Xw1Jss
  2. Health Protection Agency HIV in the United Kingdom: 2012 report. See http://bit.ly/10DhQuM
  3. Langford SE at al. Predictors of disease progression in HIV infection: a review. AIDS Research and Therapy4:11. doi:10.1186/1742-6405-4-11, 2007.
  4. Ellis S et al. HIV diagnoses and missed opportunities. Results of the British HIV Association (BHIVA) National Audit 2010. Clinical Medicine 12(5): 430-4, 2012. Full text article: http://bit.ly/Xw5K02.