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
 

Disadvantage Affects HIV Futures

posted: 25/01/2011

Low incomes and social disadvantage strikingly affects the life and health prospects of people newly diagnosed with HIV, according to a multi-national study.

An international team wanted to find out if sex and ethnicity affect the outcomes people can expect from their HIV treatment and care. The study looked at people in Australia, Brazil, Canada and the US, and found that sex and ethnicity make often striking differences in health prospects for women and men, and for ethnic minority people compared with white people.
 

Lesson - deal with disadvantages

The lesson the study teaches us “is that socioeconomic factors are a critical influence in determining the likelihood of engaging patients in care. As a result, these factors cannot be overlooked when developing programs that aim to increase the percentage of HIV-infected patients on therapy with undetectable viremia [Viral Load].”
 

The editorial in the Journal of Infectious Diseases says that social and economic disadvantages “represent complex challenges that are beyond the traditional influence of public health,” but the failure to deal with these, undermines attempts to deal effectively with HIV.
 

UK – we have the tool but refuse to use it
In the UK, the tool in the policy toolbox that could make a real difference, the new legal socio-economic equality duty on public bodies, has been locked away by the new government. The conservative led government has decided not to implement this part of the new Equality Act.

The government has also introduced a programme of major cuts in welfare benefits, and in funding for the NHS, Councils and community sector, which will all deepen the HIV disadvantages among people in the UK that we already see.
 

Do sex and ethnicity make a difference with HIV?
The new study looked at eight years in the life of people who were diagnosed very soon after getting HIV. They found that women do worse than men, and people of ethnic minority backgrounds living in the South of the USA have the most HIV-related illnesses.
 

Even when people take HIV tests and become diagnosed, poverty and social disadvantage remain real barriers to many people attending clinics, taking treatments properly and having a reasonably healthy lifestyle.
 

This was an observational study of over 2250 people who were diagnosed with early-stage HIV between 1997 and 2007, in Australia, Brazil, Canada and the US. The people were followed for up to eight years.
 

Women and men
Only 5% of the people in the study are women and most of the women (55%) were of ethnic minority backgrounds. Women had a significantly lower Viral Load (VL) count to start with than the men, but significantly higher CD4 counts (not surprising, since women tend to have higher CD4 counts than men). Three quarters of the men were white.
 

It seems there were few women in the study because the women were half as likely as men to have symptoms typical of early HIV infection, and so women were much less likely to be diagnosed than men at this early stage of HIV.
 

Treating women and men
Similar proportions of both women and men began HIV treatment, and their CD4 cell counts matched when treatment began.
 

But women and men of ethnic minority backgrounds were less likely to start HIV treatment than white men and women. And anyone living in the southern states of the USA was significantly less likely to start HIV treatment.
 

Six months after treatment started, men and women were as likely to have their viral load fall below 400 and have similar increases in CD4 counts.
 

Untreated women and men
However, the investigators then analysed changes in the viral load and CD4 cell count of the people who did not start HIV treatment for up to three years. “Despite the fact women had higher CD4 cell counts and lower viral loads at study entry, they subsequently experienced significantly more combined HIV-related and AIDS-defining events,” emphasise the investigators.
 

Nothing to do with biology: it’s poverty and social disadvantage
After they did their detailed analysis there found no grounds for believing biology is causing women to develop HIV-related illnesses. Instead these illnesses “are the result of socioeconomic conditions.” These include “access to health care, health behaviors, lifestyle and environmental exposures.”
 

Stark ethnic treatment divide

Stark significant ethnic differences are plainly seen in the numbers of people getting HIV illnesses or an AIDS diagnosis.  Eight years after diagnosis

• almost 8 out of 10 (78%) of ethnic minority people in the Southern states of the USA got either an HIV-related illness or AIDS,
• compared to less than 4 out of 10 (37%) of white people living in the same states, and
• compared with a quarter (24%) of white people living elsewhere, and
• about two out of ten (17%) ethnic minority people living outside the South.

USA HIV strategy has three goals: cutting the number of people who are undiagnosed; getting more people to clinics and on effective treatment; and cutting HIV-related health inequalities.
 

But the editorial points out “the findings from this study threaten the success of each of these pillars.” They therefore call for “a collaborative policy and research effort across all levels of community, government and science.”
 

Source Aidsmap has references and links to two free journal articles

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

Gene Testing Cuts Side Effects

posted: 12/01/2011

Testing people before they start HIV treatment for specific genes could stop many people suffering treatment side effects and avoid the need to change HIV treatment, new research suggests.

Like any medicine, HIV treatment drugs can cause side-effects. There are 23 genetic variations HIV doctors can now use to predict bad reactions, before patient and doctor decide what treatment drugs would be best.

Gene variation says no to Abacavir
We know well that people who have an allergic reaction to the drug abacavir (Ziagen, also in the combination pills Kivexa and Trizivir) have a gene variation that can be easily found.

People should always be tested for this gene before they start treatment with this drug. If you are tested and your result is positive, you shouldn’t take abacavir.

Other genes for other drugs
Now researchers have found that some genes increase the risk of side-effects caused by several other anti-HIV drugs.

They tested 577 patients starting HIV treatment for the first time to see if they had variations in genes associated with certain side-effects.

These were mood and sleep problems caused by efavirenz (Sustiva, also in the combination pill Atripla), and a non-dangerous yellowing of the skin and eyes caused by atazanavir (Reyataz).

Genes – side effects up to 9 times worse

People taking efavirenz who have the warning gene have much higher rates of mood and sleep problems – these are three times worse if you have this ‘warning’ gene.

The risk of atazanavir-related side-effects was increased nine-fold among people with the ‘warning’ gene for that.

We need more research into drug side effects linked to genes, the researchers say.

More side effects information

For more information on the side-effects of HIV treatment, NAM and i-Base both produce good side-effects booklets
 

Nam booklet – Side Effects

i-Base booklet - HIV and your quality of life: a guide to side effects and other complications
 

HIV, treatments and genes website
There is a useful new website on HIV, drug treatments and genes – HIV pharmacogenomics

More information on genetics and HIV treatment

Source, with reference 

Image

Time to Test for Under 25s

posted: 04/01/2011

All young people under-25 should be offered HIV tests as part of everyday healthcare when visiting hospital or seeing their GP, say sexual health charities.

New figures show 13,000 people under 25 in the UK have HIV. Leading sexual health charities, like BASSH and NAM, told the BBC they want routine HIV tests to be provided, no matter what the young person’s race, gender, sexuality or postcode.

Making HIV testing part of ordinary healthcare routines would mean more young people are diagnosed in good time. HIV treatments do not work well when people are diagnosed late, and late diagnosis is a big problem in North West England.
 

Aaron's story 

Currently only the people considered most at risk, like gay men, black Africans living in the UK or drug users who share injecting kit, are normally offered HIV tests. This ignores some people, like Aaron.
 

Aaron, 25, lives in Birmingham, is happily married with two kids and is HIV positive. He only found out after he started to feel run down in September 2009.
"I can always remember the day I got diagnosed - the ninth of the ninth '09. It started off thinking that I had swine flu and they gave me the Tamiflu tablets."
Aaron had a sore throat and a fever and was showing all the symptoms of HIV, but didn't know it. "It didn't actually come across the doctor's mind to put me in for an HIV test or anything else like that. It was only when I started getting a rash below that I was quite concerned and I didn't want my Mrs to find out."
 

Routine HIV testing of people under 25
If proposals for routine testing of under 25s go ahead, under-25s would be asked to take a HIV test during any GP visit or hospital treatment. Dr Steve Taylor is leading consultant at Birmingham's Heartlands HIV Service and he told the BBC: "One of the reasons that GPs and doctors don't often offer HIV tests is that we have a perception of what someone with HIV looks like. The average person on the street, like Aaron, just doesn't feature on the radar."
 

Aaron says he's thankful he was eventually offered a blood test. "The doctors put it off by giving me antibiotics, but I thought this isn't right. So I called NHS Direct and they actually referred me to get a routine blood test, which I'm happy I did otherwise I don't know where I'd be today." Being a heterosexual male with a wife and kids, doctors had previously missed the opportunity to test Aaron. "Back in the day I used to be a bit of a player and sleep with people without protection", he admits. Aaron is living a normal life and takes HIV treatments daily - he's just relieved he didn't infect his wife. "It was disturbing having to tell my wife that I have HIV. I was worried she'd think I was sleeping around. It's a miracle that she hasn't got it and I feel pleased that I haven't passed it on."
 

Pilot testing trials
In November 2009, several pilot HIV screening programmes were run as trials in Brighton (with its many gay men), Leicester, and in Lewisham (south-east London and with a large black African population). The Department of Health will now consider the Time to Test report from the Health Protection Agency on the results of these trials, and decide what to do. 

Time to Test recommendations to the government

• HIV testing in primary care and general medical admissions must be prioritised in areas with a high diagnosed HIV prevalence (i.e. more than 2 people in 1,000 15-59 year olds) and among most at-risk populations, in order to reduce late diagnoses and the proportion who are undiagnosed.
• Efforts are required to increase the uptake of HIV testing among people attending sexually transmitted infection (STI) clinics and to maintain high uptake of HIV testing among women attending for antenatal care.
• Community HIV testing services need to be appropriately targeted and established with strong community representation. To be successful these initiatives require long term commitment.
• Strong links between HIV specialist services and primary care, hospital and community projects are essential for immediate continuity of care for newly diagnosed patients. Particular attention should be paid to prompt referral of patients newly diagnosed in primary care and community services to minimise loss to follow-up.
• Economic evaluations, including cost-effectiveness studies, are needed to determine the best strategies to expand HIV testing in each of these settings.
• Concerted effort and ongoing resources (both human and financial) are needed to sustain successful projects beyond the research and pilot stages.
   

Time to Test report and recommendations (December 2010)

HIV and people under 25 in NW England

• By the end of 2009, there were 333 people under 25 diagnosed with HIV living in NW England
• Three quarters (248 out of 333) of the young people living in NW England got HIV sexually, as teenagers and young adults. Sex education around HIV is clearly not working for hundreds of young people. Almost all the other young people became HIV positive as a baby, from their mother 
• One in three of the 15 - 19 year olds got HIV through sex (most of those diagnosed between 15 and 19 were infected as babies - very few 15 - 19 year olds take HIV tests)
• Almost all the 213 young people between 20 and 24 years old got HIV sexually (only 9 got HIV in any other way)
• Around half the teens and young adults who got HIV sexually are bi and gay men, and the other half are heterosexual women and men (three quarters of the heterosexually infected people are young women)
• Most of the young gay and bi men with HIV are white, with around 5% having an ethnic minority background; most of the heterosexually infected young people have an ethnic minority background, with a minority who are white.
   

This analysis comes from figures in Tables 3.1 and 3.5 of the 2009 report on HIV in NW England. 

Halve It campaign
One in four people living with HIV in the UK is unaware they have the infection and therefore unable to access potentially life-saving treatment. Halve It is a new joint campaign aiming to halve, within five years, the proportion of people living with undiagnosed HIV infection and the proportion of people diagnosed late with HIV. The campaign is led by a coalition of HIV and healthcare experts, including MedFASH.
 

The Halve It position paper Early Testing Saves Lives calls on government nationally and locally to make HIV a public health priority. It was launched on World AIDS Day at the Time to Test for HIV multidisciplinary conference, by British HIV Association Chairman, Dr Ian Williams and MedFASH Chief Executive, Ruth Lowbury.

Early Testing Saves Lives    MedFash report for the national Halve It campaign

Time to test for HIV - videos and pdf files of all the presentations. Includes reports of the Brighton, Leicester and Lewisham HIV testing trials 
 

Source