Tag Archives: Black people

Many older people with HIV ‘face age-related stigma’


Many older people with HIV say they are stigmatised because of their age, leaving them feeling isolated and afraid, a study suggests.

Researchers at Keele University say HIV is still widely seen as a disease of young people.

They say older women, in particular, fear they will be seen as “undignified” or “sexually irresponsible”.

Many in the study also expressed fears over the uncertain impact of the disease as they moved into old age.

Thirty years on from the discovery of the Aids virus, the public health warnings that followed, including the “tombstone” adverts, still have a powerful resonance for those who saw them.

They helped to shape perceptions of a disease seen then as a death sentence.

Now advances in treatment mean people with HIV can have near-normal life-expectancy.

And that has had a huge impact on the types of patient needing treatment.

‘Lazarus effect’
Dr David Asboe, a consultant in HIV medicine at Chelsea and Westminster hospital, recalls the desperate outlook for patients he looked after 20 years ago – usually young gay men.

“We knew that once patients had an Aids diagnosis that would be uniformly fatal. The average life expectancy was approximately two years,” he says.

“But in the mid-1990s we had effective treatment and suddenly it changed very quickly, there really was this Lazarus effect.”

Today, half the people Dr Asboe sees are aged over 50. Some are in their mid-80s. They include gay men and heterosexual men and women. Some were infected in the UK, some overseas.

A significant proportion, he says, acquired HIV recently. He says there seems to be a myth that as people get older they might somehow be protected. That, he emphasises, is not true.

Dr Asboe, who is also chairman of the British HIV association, has been involved with the HIV and Later Life (Hall) study based at Keele University, which has looked at the social and psychological impact of the virus for people over 50.

This is a growing cohort. According to the Health Protection Agency, in 2011 more than one in five adults accessing HIV care in the UK were over 50. In 2002 it was one in nine.

The researchers used focus groups, surveys and life-history interviews with 76 older people in the London area living with the virus.

Dr Dana Rosenfeld, who led the project, says there was an “immense knowledge gap” in this field. She says it has revealed a sense of anxiety about how they may be perceived.

“A lot of the people to whom we spoke, particularly but not exclusively the women, spoke of their sense that they would be seen as undignified, that having HIV in later life would be read as sexually irresponsible.

“And there was a real sense that particularly in later life HIV status would be read in very stigmatised ways.”

That was a worry for 63-year-old Adrienne Steed from Blackburn, who was diagnosed with HIV 11 years ago, infected by a long-term partner.

He had died two years previously of liver cancer. She did not know he had had HIV so when she started having symptoms it did not occur to her – or to the doctors she saw – that she could be carrying the infection.

“It was a terrible shock to me and something I remember to this day. I had no idea I was HIV-positive. It was the last thing on my mind,” she says.

It took four years until she felt able to tell her son.

“During that time I experienced what it’s like to live as an invisible woman with this big secret that you couldn’t tell anybody.

“It was a horrible time. It’s the stigma. You feel ashamed of yourself even though you’ve got nothing to be ashamed of.

“People don’t realise you can contract it from a loving partner who might not even know that they have it themselves.”

Now she helps others through a blog and local support group, so – as she puts it – they don’t have to live with what can feel like a “dirty secret”.

“Once they’ve spoken to me it normalises it a bit more,” she says.

“They think, ‘Oh she doesn’t look too bad. She’s nearly 64, she’s active, she’s still laughing. There must be some hope there.'”

The Hall study found the experience of ageing with HIV was heavily influenced by community.

Older gay men were more likely to know other people with the virus, and to know more about support organisations.

Black African heterosexual men and women had also lived with the spectre of HIV for years, but were less likely than gay men to disclose their status to others, the study said.

Many white heterosexuals, meanwhile, felt they were a “minority within a minority”, and that their family and friends would be shocked by their HIV status.

Most of those who took part in the survey felt lucky to have survived into later life, but many were troubled by uncertainty over the physical impact of the virus or side-effects of treatment for this – the first generation to age with HIV.

via bbc

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Charities criticise London ‘failing’ HIV prevention programme

Charities have criticised the way HIV services in London are commissioned following the release of a report which highlights “significant management failings” and a “lack of strategy”.

The report said there was "an urgent need to address HIV prevention in London"

The Pan London HIV Prevention Programme (PLHPP) Needs Assessment report highlights “failings” of the pan London HIV commissioning group, which spends £2.3m a year.

HIV treatment in London costs £500m with almost 30,000 people accessing care and that number rising by 5% annually.  The PLHPP provides prevention work targeting gay men and African communities and treatment information for people with HIV.

HIV prevention charity African Health Policy Network (AHPN) chief Francis Kaikumba said he was “shocked, annoyed and heads need to roll” in light of the report.  Meanwhile, Caspar Thomson, director of the National Aids Manual, which provides information on HIV and Aids, said: “The whole process is moving too slowly. There’s an urgent need to address HIV prevention in London.”

But Mark Creelman, director of strategy at Inner North West London Primary Care Trusts (INWL PCTs), which leads the pan London HIV commissioning group, said: “We are working to ensure the programme has the right leadership and the right governance in place to be as effective as possible.”
‘Crisis level’

The needs assessment report was prepared by the INWL PCTs on behalf of the Pan London HIV commissioning group and will be used to guide future commissioning intentions.

It identified “significant failings with the management of the programme” and said “providers have fallen far short of their activity targets”.


  •     Almost 30,000 people with HIV accessing care in London
  •     About 26% of Londoners affected with HIV remain undiagnosed
  •     People diagnosed with HIV rising by 5% annually
  •     46% of those diagnosed in London are men who have sex with men
  •     Black Africans make up 5.5% of London population but 32% of those newly diagnosed with HIV
  •     Treatment costs are £500m per year.

Failings identified by the report included “a lack of clarity over leadership” and “inconsistent direction from commissioners”.  The programme “appears to have evolved over time without any explicit strategic direction”, the report said.

Mr Thomson responded to the report saying: “Over the course of the years of the programme, I think the strategic direction was lost.”

Mr Kaikumba said: “HIV prevention work in London is at an all-time crisis level. Where is the accountability? Why has there been a lack of leadership?” he asked.

“Heads need to roll in terms of what the PLHPP is going to do about it.”

But Mr Creelman said: “The basis for the needs assessment was to give us a more strategic direction.

“Across commissioning and providers, we have a joint responsibility to ensure we’re spending taxpayers’ money effectively.”  Francis Kaikumba, head of the AHPN AHPN chief Francis Kaikumba says the proportion of money going towards Black Africans is “poor”

The report highlights the need for an “urgent” exercise “to inform commissioning intentions”.  Another report, entitled PLHPP Final Evaluation Report, published last February, showed of 17 projects commissioned, only two “merited continued commissioning”.

A total of 11 were said to “merit no further investment” while four needed “fundamental restructuring”.  Nevertheless, these projects all continue to receive funding through the programme, nearly a year after the report was published.

Mr Thomson stressed the need for urgent action, saying: “Organisations are under threat because of the delays and if some of them go a huge amount of knowledge and expertise will be lost.”

But Mr Creelman said: “The needs assessment is very much the start of the process.  We understand the urgency but we wanted to make absolutely sure within the evidence that has been collected, that organisations look at the needs assessment.”

Contributors to the report now have until 6 February to comment further, before new commissioning intentions are “developed”.

The needs assessment report also highlighted that the PLHPP spends £320,000 per year on the black African community, compared with £1.3m on “men who have sex with men”.

“Spend targeted at the black African population appears disproportionately low” the report said.

Mr Kaikumba said: “The amount of money that goes towards Black African work is ridiculous – it’s really poor.  We’re shocked and annoyed how few pennies are being spent to support black Africans with HIV,” he said.

But Mr Creelman said: “The needs assessment supports that Black African work is much better served by being done at a local level.  Lots of PCTs have Black African HIV prevention programmes and those programmes were set up to address their local needs.”

Mr Kaikumba said the report showed: “We’re spending such a tiny amount on prevention.”  Can we get away with spending so little?” he asked.

But Mr Creelman stressed: “This is a programme within a wider prevention portfolio. The local PCTs also fund localised services”.  Meanwhile, with 26% of Londoners affected with HIV remaining undiagnosed, there appear to be no plans to reduce the amount spent on HIV prevention.

“Chief executives are absolutely committed to not taking any money out of prevention in this programme,” Mr Creelman said.

Original Article By Andy Dangerfield at BBC News

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