Don't get tested too late, says Anna Poppa
 illustration by raffaele teo |
There are an estimated 13,000 people with undiagnosed HIV infection in the country at the end of 2001 - around 30 per cent of the positive population.
Despite the availability of successful HIV treatments, which have dramatically altered the course of HIV infection, many people, it seems, choose to remain ignorant of their HIV status.
People with undiagnosed HIV frequently do not become aware of it until they are either seriously ill, or at risk of becoming so. This was the experience of PN's Laurence Gibson. Now 25, he was 21 when diagnosed.
"When I was diagnosed I was very unwell - I could hardly walk in fact," he says. "I'd had a test two years previously which came back negative, so when I started to get unwell, my doctor presumed it couldn't be Aids-related. When the test came back positive, my first reaction was 'my life is over'."
Colin was also diagnosed when he was ill. What stops people like him from testing? "Fear. Denial. I think it's a bit like getting around to writing a will; you keep putting it off because you don't want to think about it and it's something you'll do at a later stage."
Laurence and Colin's experience is not unusual. In 2001, over 80 per cent of UK Aids diagnoses were made in people whose HIV infection had been diagnosed in the previous three months. In most cases a positive HIV test and an Aids diagnosis happened simultaneously. In fact, a third of all HIV diagnoses in the UK are made late in the course of disease, when the CD4 T cell count is already below 200.
The lower your CD4 count is when you start treatment, the higher the risk the drugs may not prevent Aids-related illness. This is because the risk of getting an opportunistic infection or an HIV-related cancer grows substantially when your CD4 count falls below 200. Since CD4 counts take a while to rise if your HIV drugs are working, you stay in the Aids 'danger zone' longer if you start treatment later.
A recent survey by the Royal Free and University College Medical School found that if you started treatment with a CD4 count of 100, your CD4 count would, on average, have exceeded 200 3-4 months after starting treatment. But if you started treatment with a count of 10 - not uncommon - it could take on average 9-12 months, and in some cases years, to reach the same figure.
People who have contracted HIV heterosexually far out-number gay men when it comes to undiagnosed infections. Colin says: "Gay men have a longer history of support," he says, "at least within their own community."
In the UK, the average CD4 count at diagnosis is lower amongst heterosexuals than gay men or injection drug users, and lower amongst black African heterosexuals than among white heterosexuals.
Around one in five gay men are diagnosed late; in heterosexuals the figure is two in five. What's more, this 40 per cent rate has hardly changed since 1990, suggesting efforts to encourage black Africans to take up HIV testing and care are not working as they might be.
In the United States the prevalence of undiagnosed HIV infections is also around a third of the HIV-positive population. US health officials are slowly coming round to the idea that the status quo, opt-in HIV testing, is not working well, and are advising that HIV testing needs to become one of the tests routinely offered in many different health care settings.
UK HIV testing policy is also moving more slowly in this direction. The Government is telling GUM clinics to begin providing HIV screening on an opt-out basis, rather than the current opt-in system. This means you are offered a test routinely and have the option of saying 'no', rather than having to ask for one.
UK HIV testing policy is also moving more slowly in this direction. The Government is telling GUM clinics to begin providing HIV screening on an opt-out basis, rather than the current opt-in system. This means you are offered a test routinely and have the option of saying 'no', rather than having to ask for one.
Dr Chris Taylor is Consultant in Genitourinary Medicine (GUM) at King's College Hospital in South London, a region which hosts the UK's highest rate of new HIV infections.
"Here at King's we have had opt-out HIV testing since the beginning of the year," he says. "People get a leaflet saying what tests will be done in a routine sexual health check, so now people are routinely tested for HIV. The doctor discusses the HIV test and the patient has one unless they say they don't want one. Our Health Advisors would say that more people are testing positive as a result."
Of course, there are costs attached to changing care protocols in this way. As Chris explains, "The number of people we are testing for HIV has gone up dramatically, and in this financial year is already a significant cost pressure. If you increase testing by 50 per cent, even if it's only five pounds a test, that's a significant variance in your budget. Here, it works out at an extra £3,100 for the first two months of this year. So if you look at that over the year, it's £18,000, which is not an insignificant amount of money. That's one member of staff."
Any HIV diagnosis brings up a range of difficult issues, but there are often particular problems for people who are diagnosed late, as Laurence found out: "After diagnosis, I was put on a combination and because my immune system began to reconstitute itself, I developed pneumonia - and that almost killed me."
Laurence's strain of HIV was of such unusual virulence his case featured in the British Medical Journal. At diagnosis he had a CD4 count of 35 and the opportunistic infections PCP and MAI.
He says: "I wasn't in a fit state to make decisions or even understand my treatment for seven months, till I left hospital." Liver problems and drug resistance meant that many HIV drugs did not work for him, but on a mix of T-20, Kaletra and three nucleosides, he is now healthy with a CD4 count of 800.
Chris Taylor says: "One of the difficulties is that you come in and you're sick, you often have another infection such as TB which needs treatment, and that's bad enough. But then finding out you also have HIV is another adjustment."
"If you have TB, the implication is that your family and friends will need to be screened. If you have HIV your partner might also need to be tested; you'll need to think about treatment, fast, and perhaps face stigma in the community. It's an enormous amount to take on."
"A lot of people who are presenting late with HIV infection have problems with immigration, housing, benefits, debts - and all manner of social problems. They're often recent immigrants or asylum seekers, and they've presented late because they don't want to disclose their presence in the country because they've stayed late, or are worried about their visa. It can be extremely complicated."
This complexity of need encouraged King's to set up a satellite service in partnership with THT Lighthouse South. "Basically they provide social care and we provide medical care in order to give an integrated service," says Chris. "The basis of that is to try and separate some of the social issues, because when you've got someone in the consulting room and all they want to talk about is immigration and benefits, the medical side can get neglected."
I asked Chris for his thoughts on the wider measures required to make a dent in this problem. He didn't hesitate to pinpoint one major culprit: national policy on immigration and asylum and access to healthcare.
"I wouldn't say there's a clampdown, but there's a lot of interest in some hospital trusts in people who are receiving healthcare but for various legal reasons are not eligible to do so," Chris said.
"It's a false economy. If someone presents with toxoplasmosis and spends ten days in intensive care, they can get that treatment because it's an emergency. But then when you discharge them you can't give them antibiotics, and so three weeks later they'll be back on intensive care and that's going to cost so much more."
"Refugees and asylum seekers in Italy get free healthcare because it's felt that that's much more cost-effective than waiting for people with any condition to present when they're really sick. You know, keeping someone in negative pressure [for TB] for two months here is phenomenally expensive, whereas if people could have accessed healthcare and got tested earlier, and maybe received treatment, then we could have prevented that. It causes no end of problems and it's completely counter-productive."
So, are there any positive aspects of being diagnosed? "Not many," acknowledges Colin, "but the support I received from friends was, and is, wonderful."
Laurence agrees the experience has had its plus points: "I look back now and don't regret any of it, simply because of the mental strength it has given me. Four years on, I see life very clearly. I see what is important and what isn't. It gives me, and many of my friends, hope for the future."
Anna Poppa is a freelance writer: annapoppa@tiscali.co.uk
