Answers in Untested Mystery

posted: 12/04/2011

HIV experts in England are puzzled why some people using STI clinics refuse HIV tests. We know for sure that some of those refusing HIV tests do have HIV (from using blood from samples given for syphilis tests and after the syphilis test is done and the blood sample is made completely anonymous, it can be tested for HIV).

The 2009 results from doing this show that 2.4% of gay and bisexual men and 0.25% of heterosexuals tested for syphilis came to the sexual health clinic with undiagnosed HIV.

But only 63% of these people agreed to a HIV test at the STI clinic - much lower than the average rate of HIV testing for people using STI clinics.

Why are so many people who have ‘undiagnosed’ HIV, refusing HIV tests?

One quarter must already know they have HIV - they are taking HIV treatment !

Some useful answers to the testing mystery have now emerged. Now we know that around a quarter of people with ‘undiagnosed’ must know they have HIV, because blood tests prove they are taking HIV treatment. These and other results, given at the British HIV Association conference in Bournemouth last week, are the first clear evidence of some answers to the ‘undiagnosed’ mystery.
 

Slightly more heterosexual women and men (32% for both men and women) than gay men (24%) are using a different clinic for STI checks than for their HIV treatment. Experts thought gay men with HIV were more likely to go elsewhere for HIV checks than heterosexuals. Experts don’t always guess right. Some people with HIV have told community organisations and patient advocates that one reason they go elsewhere for testing is to avoid unwanted, intrusive or judgemental discussion of their sexual behaviour by their own HIV clinic.
 

The results means

• 9 in 100 of the gay and bisexual men who said yes to a syphilis test but no to a HIV test have HIV. At least 2 of those 9 are on treatment but didn’t tell the STI clinic they have HIV
• 8 in 1000 of the heterosexual women and men similarly are HIV positive. At least 2 of those 8 are on treatment but did not tell the STI clinic they have HIV.
   

These findings will make little difference to national estimates of how much undiagnosed HIV there is in the country.
 

Why do gay men who don’t yet know they have HIV refuse HIV tests?
Another small study given to last weeks conference looked at why some gay men refuse HIV tests. Researchers gave an anonymous questionnaire to 19 men who didn’t want to be tested, even though they had had anal sex without condoms and have, either never been tested, or had taken anal sex risks since their last HIV test.

The men could tick more than one reason.
 

15 of the 19 men said they believed they were at low risk of HIV infection [2 of the 19 men knew their partner has HIV]

• 14 said they were emotionally unprepared for a positive result
• 4 said they don’t like giving a blood [but nonetheless gave this to have the syphilis test]
• 4 also mentioned prosecutions for HIV transmission
• 4 said they were planning to test 'next month'
• 3 mentioned worries about the confidentiality of the HIV test result.

Testing Advantages well known

Most of the men know the advantages of HIV testing

• 16 said testing could give peace of mind
• 16 said testing allows treatment to start at the best time.

Testing worries rule

But all the gay men listed the disadvantages to them of HIV testing.

• 17 said testing was stressful
• 8 were worried about having to tell a boyfriend if they were positive
• 7 were concerned about the insurance and mortgage implications.

Unready for positive result, testing stress, in denial about risks

So most of these gay men didn’t feel emotionally ready to deal with a positive result, and find HIV testing stressful.

• Most thought their HIV risk was low, despite having taken enough risks to have got HIV and needing to visit an STI clinic.

The study authors suggest investigating ways of overcoming gay men’s resistance to testing at STI clinics.
 

Source 
Reference – the free conference abstracts - read O13 & P152

Talking and Telling about HIV

posted: 28/02/2011

There’s a lot of fuss made about how important it is for gay and bi men diagnosed with HIV to tell their sexual partners about HIV, before any sex takes place – which is known as ‘disclosure’.

Telling people whether or not you have an STI / HIV is your choice.

We think it is smarter if every  person in the UK were to talk about HIV and discuss their and partners’ HIV and STI status and risks before sex. But telling others about having HIV is always a choice.

One-sided talking

One major problem is that undiagnosed people, including gay and bi men, rarely ever talk about their own HIV status, but instead expect diagnosed people to always reveal their HIV status.

Some undiagnosed men then decide not to have sex, or decide on less risky sex after the partner says they have HIV.

Conference debates

George House Trust has critically examined the evidence for and against relying on being told HIV status as a way of avoiding getting HIV. Chris Morley, George House Trust's HIV policy expert, issued a challenge to gay men's HIV prevention workers when he gave a detailed presentation at the CHAPS conference last week for England's sexual health and HIV prevention organisations.

The challenge is to tell undiagnosed men that relying on being told by people with HIV is a seriously flawed way to try to avoid HIV. The HIV risk run by men expecting disclosure is simply too high. The challenge was also to help undiagnosed men be more respectful to anyone who does disclose having HIV. Some disclosing men with HIV are then shamed, abused, rejected, or worse.

Talking about HIV happens very unevenly and the expectations of disclosure put an unbalanced burden on people with HIV.

Dysfunctional Disclosure

The far bigger problem however, is that relying on being told, and being told accurately, is a highly risky way to manage anyone's HIV risks.

Only men diagnosed with HIV have HIV status information that is at all reliable.

Depending on men to tell you they have HIV puts you at a big HIV risk. Disclosure doesn't work at all well as a way of staying HIV negative. 

• 1 in 3 gay and bi men have never had a HIV tested - so untested, can't tell anyone anything useful about their own HIV status
• Men who have been tested usually only have information that is past its sell-by date
• Many men have had condomless anal sex since they had their last negative HIV test. An MOT certificate saying your car was roadworthy is no guarantee of future safety after you have had a crash. In the same way, a negative HIV test result becomes worthless once you have had unprotected sex.
• The only dependable information is from men who have been diagnosed with HIV to tell you this; but not all diagnosed men disclose in all situations; for example disclosure by diagnosed HIV+ men is less common in gay saunas and clubs.

George House Trust is also making a second presentation, about cuts in legal advice and representation for people with HIV. 

HIV Legal Advice Services
Among the hundreds of cuts, one cut would remove most legal aid for advice and representation at courts and tribunals. £450 million is to be slashed from budgets for advice, such as provided by Citizens Advice, Manchester Advice, Law Centres and other organisations, for immigration and asylum, welfare benefits, housing, employment and most discrimination cases.
 

This will affect millions of people a year, and you can tell things will become really bad, because even the Judges’ Council has gone public with its objections.

HIV Talking and Telling - George House Trust discussion for CHAPS-14 conference, Manchester  

HIV Advice Services - George House Trust discussion for CHAPS-14 Conference, Manchester

CHAPS-14 Conference, Manchester, March 9-11th

Image - Let's Talk HIV - Swedish language HIV site
 

Positive Talk About Testing

posted: 20/01/2011

Positive gay men talking about the HIV test are a feature of a new website that encourages undiagnosed gay and bi men to take a HIV test every year. HIV testing is rising among gay and bisexual men; seven out of ten men have now taken a HIV test (and four in ten men took a HIV test last year). But 10,000 men do not know they already have HIV. All undiagnosed gay and bi men are now advised to have an annual HIV test.

I Did It campaign

A national testing campaign is now running across England using outdoor, online and gay press adverts. The I Did It campaign believes men are more likely to take a HIV test if they hear positive things from other men about testing, whatever the result.

The new website is to inspire and encourage men through other men’s test stories. It has a handy local clinic finder, and the men can later tell their own HIV test story.

Clips of positive men talking
Aside from men’s HIV test stories and the clinic finder, the website will have key facts about HIV tests, a discussion forum for men to talk about testing, videos of positive men talking about receiving a positive test result, and information on the support available for men who test HIV positive.

Manchester test-bed
Untested men in Manchester and London gave feedback on the I-Did-It campaign, which runs until March. There will be advertising on Gaydar radio, and it’ll be pushed on social media with Facebook and Twitter and a personal message to 50,000 men on Gaydar.

Three themes – handy, protecting, habit
There are three ads, about the convenience of testing, about testing to protect partners, and about making testing an annual habit. HIV tests give undiagnosed men certainty, or peace of mind.

The ‘I Did It’ campaign is one of a series in 2011 that encourage gay and bi men to talk about the ten things that cut the spread of HIV.

Details and publicity materials

For more details, the three A4 campaign posters, or online banner ads, please contact Richard Scholey at Terrence Higgins Trust on 020 7812 1782 or email him

Email MP for World AIDS Day

posted: 22/11/2010

One in 4 people living with HIV in the UK don’t know they have HIV. That means that about 22,000 people are not getting the treatment they need to stay well. Untested people are also much more likely to pass HIV on to others.
 

Undiagnosed people - halve by 2015

We, and Terrence Higgins Trust, wants to halve undiagnosed HIV within five years. By increasing testing and reaching those most at risk, we can improve the health and life expectancy of people with HIV, reduce new HIV infections, improve public health and save the state money.
 

There is a strong case for government action. What we need is the political will to deal with the problem head on. This is where you, as a valued campaigner, can help.
In Parliament for World AIDS Day (1 December) there is an event to inform and persuade MPs, organised by Terrence Higgins Trust. We want your MP to be there.
 

Take two minutes to email

Please take 2 minutes to email your own MP to ask them to attend this. Your postcode on the online form produces an instant email to your MP, which you just click to send. Thank You.

Reduce Numbers Undiagnosed

posted: 15/11/2010

The number of people in England and Wales who do not know they have HIV stayed the same between 2001 and 2008, despite more people being diagnosed with HIV. 

Many of the people with HIV in the UK do not know this yet and undiagnosed people are much more likely to pass on HIV than people who are tested, advised about safer sex and treated.

To prevent onward HIV transmission we need to minimise the number of people with HIV who are undiagnosed and for how long people are undiagnosed.
 

A new study by the Medical Research Council, published in AIDS, estimates the total number of HIV positive people living in England and Wales aged 15-44, both diagnosed and undiagnosed, has increased from 32,400 in 2001 to 54,500 in 2008. Much of this rise is because more people are taking HIV tests.
 

Rise in diagnosed
The proportion of HIV infections diagnosed rose from 58 per cent in 2001 to 71 per cent in 2008, but the estimated number of people with HIV who have not been diagnosed has not fallen, because HIV infections are continuing to happen. Dr Anne Presanis, the leading researcher at the MRC Biostatistics Unit in Cambridge says:
"HIV remains an important public health problem. As long as a large number of people continue to be unaware of their condition, the infection will continue to pass from person to person. These findings highlight the need for continued public health policies aimed at both reducing further HIV transmission and encouraging individuals to get tested and access the help and services they need."
 

Study co-author Professor Noel Gill, head of the Health Protection Agency's HIV & STI department, said:
"The findings of this paper reveal the need to focus efforts on reducing transmission of HIV if we are to bring the overall number of cases down. Early diagnosis of HIV infection will give individuals access to treatment, improve their survival and reduce the risk of transmission to partners. The HPA recommends that people at higher risk of HIV, such as men who have sex with men, should test at least annually for HIV and that everyone should use a condom with all new or casual sexual partners - it is the surest way to ensure you do not become infected with a serious sexually transmitted infection such as HIV."
 

How they did it: triangulating data
The researchers estimated trends in diagnosed and undiagnosed HIV prevalence by putting together different sets of data. They used data on exposure group sizes from behavioural surveys and the population census; on prevalence of total and undiagnosed infection and proportions of infections diagnosed from unlinked anonymous sero-prevalence surveys and community surveys; and on the total number diagnosed from an annual survey of individuals with diagnosed HIV infection. They put these different data together, using a form of statistical "triangulation" of the available data, known as Bayesian multi-parameter evidence synthesis.
 

Source Medical Research Council