Tag Archives: Old age

How older people with HIV are facing the future

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In common with many people diagnosed with HIV in the 1980s, Danny West thought he had just months to live.  He became ill, watched friends die and prepared for his own demise at the hands of what was then an unknown virus.

Nearly 30 years on, Danny, who is from London, is one of the longest-surviving people in the world with HIV.  He is part of a growing group of around 19,000 adults aged over 50 receiving care for human immunodeficiency virus in the UK, many of them kept alive thanks to improvements in drug treatments.

Recently, the UN called for the “ageing” of the HIV epidemic to be taken seriously. It wants more services to be made available to this age group, who are now facing old age.  For many, life with HIV has been an emotional and physical rollercoaster.

Danny says he never thought he’d see 50.

“I was given a year at most. I was 24, I’d just got my social work qualification and my foot on the career ladder, and it was all whipped away in one moment.

“There was no treatment then. Over the next two years after my diagnosis, all of my peers died. Everyone went down like cards. My community was gone.”

Danny has never been able to get a mortgage and does not have a pension. Despite working in the public sector and for HIV charities for many years, he has no idea what the future holds.

Many older people with HIV have serious money worries “I haven’t prepared myself psychologically for growing older. My body is ageing faster than a normal person’s. I’ve got arthritis and osteoporosis and I live in constant physical pain.  But the real issue for me is poverty – I don’t know how I will cope financially.”

A recent study of people over 50 living with HIV by the Terence Higgins Trust, found that Danny’s concerns were not unusual.

The 50 Plus report showed that older people with HIV are financially disadvantaged compared with their peers and have serious worries about money, poor health, housing and social care.

Lisa Power, policy director at THT, says this is because many people became ill and had to give up work after their diagnosis. Others sold up, cashed in their pensions, went round the world and waited to die.

HIV Over 50

As “brilliant” anti-retroviral drugs started prolonging lives, she says, “benefits were cut for people who hadn’t made provision for their old age, leaving many of the older HIV group living on a basic state pension“.

“We found huge poverty in our study, particularly among those who thought they had a death sentence. Now we’re coming round to understanding that people with HIV have a normal life expectancy.”

For those diagnosed in recent years, the treatment is straight forward and they can carry on working and raise a family. But for those diagnosed back in the 1980s, the HIV journey has been considerably more traumatic.

Doctors still do not yet fully understand the impact of HIV on the ageing process.  Some health problems in older HIV patients may be related to the early treatments they received, which had significant and sometimes toxic side effects, rather than the virus itself.

But there is generally thought to be an increased risk of cardiovascular disease, heart disease, strokes and cancers in people with HIV.

Dr David Asboe, a consultant in HIV medicine and sexual health at Chelsea and Westminster Hospital and chairman of the British HIV Association, says more than half of the HIV patients he sees are over the age of 50, and some are even in their 80s.

“The earlier they are diagnosed, the earlier we can get them into treatment and that’s important. If there is a delay then that’s when the mortality risk increases.”

The psychological effects of HIV on this group are all too obvious, he says.  “They should be able to work, but there is a real loss of confidence, and it can change the way people consider relationships with their family and wider society.”

Danny has recently been forced to moved into damp, cold social housing in an area where he knows no-one, where he is facing the future with HIV alone.  “I don’t have a picture of what I will be doing in the next 10 years. There are lots of uncertainties and unknowns.

“I live in fear of ill health, poverty and isolation. That’s what I lie in bed thinking and worrying about.”

HIV charities say that healthcare professionals, such as GPs, need to understand more about HIV and home carers should be given more training. Too often, patients don’t have the confidence to disclose their status to their doctor or talk about their problems.  Danny says that previously any health problems he had would have been dealt with by a specialist consultant but changes mean that he now has to see his GP first for everything, which is unhelpful and frustrating.

According to Lisa Power, Policy Director for the Terrence Higgins Trust, there are still too many myths surrounding HIV and more public awareness is needed.

“One group thinks there is a cure for it, another thinks it’s a death sentence. The reality is that people with HIV have a managed, chronic condition – but they also have a life.”

Story courtesy of the BBC News Health

You can download a copy of the national study of ageing from the Terrence Higgins Trust here.

You may also be interested in: Many Older People with HIV Face ‘Age-Related Stigma’ (lass.org.uk)

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

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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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