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
 

Don't Forget the Children

posted: 16/12/2008

After a teenager died in Luton still untested, undiagnosed teenagers and children were the focus for the Children's HIV Association Conference earlier this month. The conference looked into learning the lessons from this.

There is a small but significant number of older children and teenagers who are untested and some are undiagnosed. This is not in a child's best interests as the Luton death demonstrates. What needs doing?

The presentations from the conference are now available on the BHIVA website.

• Introduction: Why are we here? Dr Chris Wood, North Middlesex University Hospital, London
• The UK epidemiology of undiagnosed HIV infection in Children Dr Pat Tookey, Institute of Child Health
• The Luton data: do parents get their children tested? Dr Michael Eisenhut
• Late diagnosis of perinatally acquired HIV Dr Katia Prime, St George's Hospital NHS Trust, London
• Consequences of undiagnosed HIV in children Dr Hermione Lyall, Imperial College Healthcare NHS Trust, London
• Children's rights: a legal overview Professor Jane Fortin, University of Sussex
• Safeguarding children: what if parents won't test the children? Ms Sally Parma, Safeguarding and Quality Assurance Service, London Borough of Enfield
• A straightforward approach to testing children for HIV Dr Djamel Hamadache, Chelsea and Westminister Hospital, London
• Case studies: barriers to testing - difficult situations and successes Dr Justin Daniels, North Middlesex University Hospital, London
• National HIV testing guidelines 2008 Dr Adrian Palfreeman, University Hospitals of Leicester NHS Trust
• Getting to grips with testing children: protocols and procedures Dr Justin Daniels, North Middlesex University Hospital, London
• Spreading the word: developing best practice, and setting standards Dr Chris Wood, North Middlesex University Hospital, London