GHT's Trustees agree a Strategic Partnership Position Statement

posted: 02/06/2011

This position statement comes during the worst economic recession to impact on the voluntary sector in the UK in living history. As a consequence, many charities face significant funding cuts, some have already ceased trading and up to 50% of charities in the UK are not expected to survive the recession.

The Trustees of George House Trust (GHT) are particularly concerned about the future of HIV social care services for people living with HIV across the North West of England.There is a real danger that the strong legacy of the HIV social care sector could be lost.

GHT’s Trustees believe that it is vital that HIV social care provision is maintained for all people living with HIV.In order to achieve this, charities within the HIV sector in the North West, and across the UK if necessary, will need to explore dynamic and creative ways of working together strategically.

This work could take a number of forms: from greater sharing of information and knowledge through to pooling resources, joint funding applications, influencing commissioners, forming consortia in order to win contracts and mergers.

GHT welcomes opportunities to explore new ways of working with highly regarded charities within the HIV sector. This will help to ensure the survival of HIV social care services within the North West. 

Anyone requesting further details should contact our Chief Executive Rosie Robinson.

HIV Superinfection - Not Likely

posted: 27/01/2009

Researchers in America have found no evidence that unprotected sex between people with HIV who are regular partners leads to superinfection with another strain of the HIV virus. They used a long-term study involving 49 people with HIV. No evidence of superinfection was found.

Superinfection and reinfection mean much the same thing and some hyping up of reports happens. Superinfection is reinfection with another strain of HIV, that harms health. Most HIV reinfection causes no apparent harm. Studies show that about 1 in 20 people with HIV who are checked for reinfection for one year show signs of this, so reinfection itself is fairly common. One of these studies was of gay men, the other of women in Kenya. There have been claims in 30-40 case reports of actual superinfection around the globe.

Instead of damage by superinfection, this study found a clear relationship between long-term frequent exposure to their partner’s virus and a strong immune response to that virus, suggesting that repeated exposure eventually builds immunity against superinfection, which is good news.

What harm can superinfection cause?

There’s been a lot of debate about whether unprotected sex between people with HIV can lead to superinfection with the virus. People with HIV are frequently advised not to have unprotected sex even with other HIV-positive people because of a risk of superinfection. Superinfection is reinfection with different HIV, from someone else, that goes bad and damages health. The damage to health is that treatment can get more complicated because the other person's HIV may carry drug resistance, and people may get infected with a more aggressive strain of HIV.

HIV can transmit with it drug resistance even if the person passing it on has never taken any HIV treatment, because the person who had infected them gave them HIV which had some drug resistance.

Aggressive and drug-resistant HIV

Some of the reported cases of superinfection have involved infection with more aggressive or drug-resistant strains of HIV. But this hasn’t always been the case – other documented cases of superinfection don’t seem to have done any harm. So researchers in San Francisco wanted to get a better understanding of the long-term risks of superinfection. What they found makes much clearer the risks of people living with HIV having unprotected sex together. Is there enough evidence of superinfection now to reasonably advise positive people to use condoms when having sex with another person living with HIV?
 

The study looked at changes in the immune system and HIV of 49 people with HIV. All the participants were taking HIV treatment and had an undetectable viral load. All 49 people had HIV-positive partners with whom they were having unprotected sex. The researchers divided the people in the study into two groups, those with partners who had a detectable (20) viral load, and those with partners with an undetectable (29) viral load.

Gay men studied

All 49 are gay men, a fact that is buried deep in the report. George House Trust suspects this is only due to the funding-threat Bush has cast over much HIV research and care for groups of people who are targets of US Christian conservatives' abhorence. Research into protective gels for anal sex has long been held back for the same reason. The early indications are that the new president is moving swiftly to end discrimination around HIV funding. 

Partners show strong immune response

The study found no evidence that any of the 49 men had been infected with another strain of HIV. Instead, they found that men who were exposed to their partner’s HIV developed a strong immune response to it. The men's immune systems were working well and seem to be preventing health damage from the partner's HIV.

Risks now much clearer

This study is important because it makes the risks of superinfection much clearer for the many people with HIV who choose to have unprotected sex with HIV-positive partners, which is known as sero-sorting.

The findings suggest that even where an individual has drug-resistant virus and a detectable viral load, the risks of superinfecting an HIV-positive partner with that drug-resistant virus are low, even for sexually receptive partners (receptive partners are at more risk than insertive ones).

What about people with more partners?

The findings provide no information about what happens if an individual with HIV has sex with many different partners with HIV (because the study only looked at HIV positive gay men and their regular positive partner), but the study’s lead author Chris Willberg, now of the Biomedical Research Centre at the University of Oxford, told aidsmap: “We would speculate that it is regular exposure to the same epitopes that is required to stimulate the responses. What we did not explore is the ability for new [epitope] responses to be developed through exposure.”

George House Trust takes that as a meaningful 'perhaps not, but we didn't study that' because there's evidence (from a study of Nairobi sex workers referred to in the aidsmap article) that superinfection is more likely if the sex is with many positive partners rather than just one.

And because the risks for transmission of HIV are always highest being receptive in anal sex, and then run in this order: being insertive in anal sex, being a woman in heterosexual vaginal sex, being a man in heterosexual vaginal sex, this means gay men who have multiple positive partners take rather more risk of superinfection than the Nairobi women sex workers.

And as the number of positive partners rises, the greater the risk.

It needs another study to answer the 'is there a risk of superinfection with multiple partners' question, and a scientific study seems very difficult to arrange. This is because casual partners cannot be identified in advance; some will have undetectable viral loads but others won't, and this means the numbers needed for such a study would have to be huge; obtaining agreement to take part from many casual partners doesn't seem possible; and some partners would be uncontactable, or refuse to take part. We can't realistically expect to see any scientific answer soon for people who want information now on the risks with multiple partners.

Low risk with more partners seems likely

It's inevitable that some people will speculate and want an informed view, following this reassuring superinfection study. Considering the evidence in the studies, how the body responds, and especially how few cases (just 30-40) have been reported from around the globe, one reasonable view is the risks are low of having much poorer health through superinfection resulting from unprotected sex with multiple partners, even if the partners have detectable viral loads.

This is because sero-sorting with multiple partners among gay men living with HIV is fairly common and has been happening for some years, and if superinfection damage was common, we would be having far more case reports from around the world. Superinfection is big news, so case reports are likely whenever serious problems occur.

However each person needs to make their own decisions on which risks to take when science can't give us an answer. People living with HIV interested in this should discuss with the doctor their advice and interpretation of the evidence. Then make their own decision.

More risk

If the person's health is not so good, exposing the immune system to even more stress from different people's HIV is rather more risky and the health damage could be more significant.   

The far more serious risk from unprotected sex with multiple partners for most positive gay men (whether or not the partners have HIV) is of other STIs. LGV, syphilis, and hepatitis C are particularly likely and harzardous to health when men with more partners already have HIV. Our advisers are always willing to discuss levels of risk and how men can keep these within limits that are comfortable while having a satisfying sex-life, without judging what men do or any associated drug use.

Women too

Aidsmap also asked the study's leading author a really important question many positive women and their partners need answering - do positive women have the same low risk of superinfection from a positive partner as men?

His reply means 'as long as things work in the same way for women, and this looks very likely,' which women and their partners will welcome, but he unhelpfully cloaks this in a long scientific answer: “The most logical explanation for the maintained responses that we observed is that they were driven by receptive exposure to HIV antigen derived from the viremic partner,” Chris Willberg commented. “Therefore, we would expect to see the same results in women also receptively exposed to viremic partners. If the mechanisms responsible for driving the responses in this study are the same as those that drive responses in exposed uninfected individuals, then there is plenty of evidence to suggest women would respond in a similar manner.”

We think 2/10 would be a fair mark for 'ability to communicate' with HIV positive women (and partners), who deserve a clear answer to this plain question. The scientific explanation is exact and complex, yet the actual answer disguised by all these words is clear - but only after repeated reading. Researchers need to make much better efforts to communicate plainly in everyday language the important lessons of their research and expertise, because the public ultimately fund most of the work carried out for our benefit. 17 words give the same answer, but plainly, as over 80.

Other risks - including STIs and pregnancy - remain

For both women and men, unprotected sex can have other health consequences. In the UK, LGV and syphilis are seen much more often in HIV-positive gay men, clearly due to unprotected sex. What’s more, unprotected sex between HIV-positive gay men is also linked to sexual transmission of hepatitis C virus.

Women may also expose themselves to the range of sexually transmitted infections and may become pregnant as a result of unprotected sex. A positive woman wanting to have a baby should talk first with her HIV doctor about when and how best to become pregnant and the ways of minimising the risk of having a positive child. With the right care and treatment this risk is now very low, about 1 in 100.

Further information and reference from aidsmap

The free online journal article

Carers Rights Win

posted: 01/12/2008

The millions of people trying to combine work with caring for ill, disabled or elderly partners and relatives can now claim against any employer who discriminates.

Employers who refuse to offer flexible working to carers (who might be a partner or relative), can now expect to pay compensation following a ruling by the Employment Tribunal.

This tribunal decision partly deals with what is known as the problem of "associative disability discrimination". People who do not have a disability themselves can face disability discrimination because of their link with someone who does have a disability. In this case a carer of a disabled son was discriminated against.

What's the HIV connection?

Partners and carers of people living with HIV can be especially vulnerable to discrimination by association because of the levels of stigma and discrimination against people with HIV. People have been sacked simply because their partner has HIV.

Government still blocking disability rights 

A campaign which you can help is underway to make sure the Equalities Bill deals with this problem fully. The Equalities Bill will be introduced in this week's Queen's Speech to Parliament. However the government has consistently opposed the extension of these rights to partners and carers, which is why the campaign is needed. And the campaign is not just about carers' / partners' rights, it is about the rights of the people living with HIV to whom they are linked. If the carer can't have time off, the person with HIV suffers unattended, or their household income drops because the carer has to ask for unpaid time off, or quit work. Quitting may lead to a benefit penalty of no income for weeks.

Despite its previous support for protecting the disabled from discrimination, the government so far opposed this case, including at the Euopean Court, a position described as "completely ridiculous" by the complainant's lawyer, Lucy McLynn. "It has taken someone with Sharon's determination to take the case to Luxembourg to establish something the government should have done five years ago." The government has failed to properly implement the European directive that Britain signed up to.

Forced to quit to care for son

Sharon Coleman, a legal secretary who was forced to resign because she wanted more time to care for her disabled son, was told by the Tribunal that she would be able to claim before the English courts that she suffered "discrimination by association".
 

She worked for Attridge Law in London when she gave birth to Oliver, who is deaf and suffers from serious respiratory problems, including apnoeic attacks in which his breathing involuntarily stops. Earlier this year, she told the European court of justice that treatment she says she received from the firm, such as comments that her child was "always fucking sick" and she was "lazy" when she sought time off to care for him, was covered by disability discrimination law.
 

Coleman says she received less favourable treatment because of her son's condition, whereas others were allowed time off to care for their non-disabled children.

European Court - disability protection extended to associated people

The European court found that Coleman's case amounted to discrimination by association, paving the way for claims by carers who say they are discriminated against not because of their own disability, but because of their role in caring for another person.
 

The tribunal's ruling yesterday, which follows on from the European decision, has clarified the law in England and Wales. Anti-discrimination law is not "restricted to disabled people only", the tribunal said, rejecting arguments made by Attridge Law that to allow carers to be protected would distort the law's meaning.

As a result of the ruling, an estimated 2.5 million people in Britain who maintain jobs as well as caring for sick or disabled family members will be entitled to the same treatment as other staff. Several hundred or possibly even thousands of these will be carers of people living with HIV.

"Employers will have to think more carefully about the way they respond to requests for flexible working from carers," said Lucy McLynn, the lawyer who represented Coleman.

The principle established by the European Court should now apply to disability discrimination by association, not just in employment but in all disability rights. This would cover an untested or HIV negative child refused a school place because her/his parent has HIV, for example. However this principle is unlikely to be accepted by the government, which is another reason why we need to campaign for the Bill to fully include associative discrimination.

source
 

Discrimination Protection for Partners

posted: 28/11/2008

Help push for the 2009 Equality Bill to protect partners, family and friends of people living with HIV from discrimination.

Over the last few years the laws protecting people living with HIV from prejudice and discrimination have greatly improved. However, a small loophole in current legislation means that the friends, family and carers of those same people can be discriminated against because others believe they might have HIV. In July the European Court of Justice made a landmark ruling that it is unlawful to discriminate against someone because they care for or associate with someone with a disability.

This effectively means that friends, family, partners and carers of people living with HIV are now protected from harassment and discrimination on the grounds of their loved-one's HIV status.

The Equality Bill which come before parliament in 2009 will need to properly recognise the ruling and its principles by including provisions to prevent "associative discrimination" in the Equality Bill when it comes before Parliament next year.

More details here

You can help push for this change by contacting your MP through Terrence Higgins Trust - very quick and easy to do here