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 Public Health England,
in 2011 more than one in five adults accessing HIV care in the UK were
over 50. In 2002 it was one in nine.
Stigma
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.
'Big secret'
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.
