Tag Archives: tht

#UnchartedTerritory: A report into the first generation growing older with HIV

debbie

‘I mean I have nothing, the money has gone. That’s all gone. But I mean we’d spend our holidays….having fun thinking we were going to just spend up until we died.’

The Terrence Higgins Trust has today launched a new report – Uncharted Territory – which looks at the first generation of people to grow older with HIV in the UK.  The full report and executive summary can be accessed here.

Produced with peer researchers – individuals aged 50 and over living with HIV in the UK – the report shines a light on the needs and experiences of people living with HIV aged 50+. There is no single experience for older people living with HIV and the report makes clear that there is a diversity of needs and experience, from those individuals who need very little support through to those who have more complex needs.

‘I think I’ve just reached a point in my life now where I’m settled in myself, what will be will be … you expect to get ill when you get old so that doesn’t really bother me. You stop caring what people think I suppose.’

The fact that the effectiveness of modern treatment means people living with HIV can expect to live a full life is to be celebrated, however this success brings with it a set of new challenges:

Wealth

  • 58% of people living with HIV aged 50+ were defined as living on or below the poverty line – double the levels of poverty seen in the general population.
  • Over a third of individuals were solely reliant on welfare benefits to live.
  • 84% of respondents were concerned about future financial difficulties

Health

  • 22% of people living with HIV aged 50+ rated their current wellbeing as ‘bad’ or ‘very bad’.
  • People living with HIV aged 50 and over have on average three times as many long term health conditions as the general population.
  • 84% of people living with HIV aged 50 and over were concerned about how they will manage multiple health conditions in the future.

Social Care

  • People living with HIV aged 50+ have faced discrimination from social care professionals due to their HIV status.
  • 82% of over 50s living with HIV were concerned about whether they would be able to access adequate social care in the future.
  • 88% had not made financial plans to fund future care needs.

Happiness

  • A third were socially isolated and 82% experienced moderate to high levels of loneliness.

Over 50s are the fastest growing group of people living with HIV – 1,018 individuals aged 50 and over were diagnosed with HIV in the UK in 2015 and now over one third of people living with HIV in the UK are over 50. This group, the first generation growing older with HIV, are entering uncharted territory.

The Terrence Higgins Trust will be sharing stories, stats and asking supporters to stand with those 50 and over living with HIV on social media as part of the drive to amplify the voices of older people living with HIV. Please do share and spread the word about #UnchartedTerritory.

Thanks for reading, let us know what you think in the comments below, or you can find us on FacebookTwitter or Instagram!

bfb01    btw01    bin01

                  (Or subscribe to our newsletter)

Advertisements

Increase In Life Expectancy for People Living With HIV

People with HIV have a 15 years longer life expectancy thanks to improved treatments over the past 13 years, according to a new study published on the British Medical Journal website.

Researchers found that the life expectancy of these patients improved significantly between 1996 and 2008, and that earlier diagnosis and timely treatment can increase life expectancy.   HIV infection has become a chronic disease with a good prognosis if treatment begins sufficiently early in the course of the disease and the patient sticks to antiretroviral treatment. However life expectancy for people with the disease is lower than that of the general population.

Researchers led by Dr Margaret May of the University of Bristol’s School of Social and Community Medicine set out to estimate life expectancy of people treated for HIV infection and compare it with that of the UK general population.

They used data from the UK Collaborative HIV Cohort (UK CHIC) study, which in 2001 began collating routine data on HIV positive people attending some of the UK’s largest clinical centres since January 1996.  Patients included in the analysis were aged 20 years and over and started treatment with antiretroviral therapy with at least three drugs between 1996 and 2008.

The researchers studied data on 17,661 patients, of whom 1,248 (7%) died between 1996 and 2008.   Their analysis shows that life expectancy for an average 20-year-old infected with HIV increased from 30 years to almost 46 between the periods 1996-9 and 2006-8.

The findings also show that life expectancy for women treated for HIV is ten years’ higher than for men. During the period 1996 -2008, life expectancy was 40 years for male patients and 50 years for female patients compared with 58 years for men and nearly 62 years for women in the general UK population.   The point at which a person started treatment had an impact on their life expectancy, as the researchers also found that starting antiretroviral therapy later than guidelines suggest, resulted in up to 15 years loss of life.

Doctors use a test to count the number of CD4 cells in one cubic millimetre of blood. A normal CD4 count in a healthy, HIV-negative adult is usually between 600 and 1,200 CD4 cells/mm3.   The researchers found that life expectancy was 38 years, 41 years and 53 years in those starting antiretroviral therapy with CD4 counts less than 100, 100-199 and 200-350/mm3 cells respectively.

The improvement in life expectancy since 1996 was likely to be due to several factors, they say, including a greater proportion of patients with high CD4 counts, better antiretroviral therapy, more effective drugs, and an upward trend in the UK population life expectancy.

They conclude: “Life expectancy in the HIV-positive population has significantly improved in the UK between 1996 and 2008 and we should expect further improvements for patients starting antiretroviral therapy now with improved modern drugs and new guidelines recommending earlier treatment.  There is a need to identify HIV-positive individuals early in the course of disease in order to avoid the very large negative impact that starting antiretroviral therapy at a CD4 count below 200 cells/mm3 has on life expectancy.”

Dr Mark Gompels, lead clinician and co-author, North Bristol NHS Trust, said “These results are very reassuring news for current patients and will be used to counsel those recently found to be HIV-positive.”   In an accompanying editorial, researchers in Boston argue that, although these gains are encouraging, they have not been seen in everyone with HIV.

Nevertheless, this study “serves as an urgent call to increase awareness of the effectiveness of current HIV treatments in patients and providers,” they say. “In turn this should increase rates of routine HIV screening, with timely linkage to care and uninterrupted treatment. As these factors improve, the full benefits of treatment for all HIV infected people can be realised.”

The study also finds that women with HIV could expect to live a decade longer than men with HIV, perhaps because women are tested for HIV during pregnancy and are likely to start treatment earlier.

The data
  • Data on 17,661 patients, of whom 1,248 (7%) died between 1996 and 2008
  • Life expectancy for the average 20-year-old with HIV increased from 30 to almost 46 years between the periods 1996-9 and 2006-8
  • Life expectancy for women treated for HIV was 10 years’ higher than for men
  • Starting anti-retroviral therapy later than guidelines suggest resulted in up to 15 years’ loss of life
Dr. Anthony Fauci explains how advances in treatment research have dramatically increased the life expectancy for those infected with HIV.

The Terrence Higgins Trust says people at risk should get tested now.  Figures suggest more than 80,000 UK are living with HIV, and about 25% are unaware they have the infection however, it’s good news for people with HIV, their families and friends.

Sir Nick Partridge (CEO of THT) said: “It also demonstrates why it’s so much better to know if you have HIV. Late diagnosis and late treatment mean an earlier grave, so if you’ve been at risk for HIV, get tested now.   Of course, it’s not just length of life that’s important, but quality of life too, and having HIV can still severely damage your life’s chances.   While so much has changed 30 years on from the start of the epidemic, condoms continue to be the best way to protect yourself and your partner from HIV in the first place.”

Are you interested in having a HIV test?  We offer a completely free and confidential rapid HIV test and you’ll get the results within 60 seconds from a simple finger prick test. We use the Insti HIV test produced by BioLytical laboratories. The test is 99.96% accurate from 90 days post contact for detecting HIV 1 and 2 antibodies. We also have a mobile testing van which is often out in communities providing mobile rapid HIV tests. Appointments are not always necessary, if you would like a test, please contact us on 0116 2559995

Original Articles via BBC News and the British Medical Journal

STAY UPDATED
Follow LASS on Twitter
or subscribe via email

THT Asks Government to Legalise and Regulate HIV Home Testing Kits

Almost two-thirds of people would consider using HIV home testing kits if they were legally available and regulated, according to a survey.

The poll, by Terrence Higgins Trust (THT), comes as the charity urged the Government to legalise and regulate home testing in a bid to cut the number of cases of undiagnosed HIV in the UK.

The sale of HIV home testing kits is currently illegal in the UK. While they can be bought over the internet, THT says they are unregulated, often of poor quality and do not direct users to places where they can get support.

Of 490 people surveyed who have not tested HIV-positive, 63% said they would consider using the kits if they were legalised and 51% thought legalisation would make them test more often.

Among gay men, one of the groups most at risk of HIV in the UK, 60% thought legalisation would make them test themselves more often.

In 2009, 22,200 people were estimated to be living with undiagnosed HIV in the UK.

Lisa Power, policy director for THT, said: “Reducing undiagnosed HIV is a major challenge. A quarter of those with HIV in the UK remain undiagnosed, and so are more likely to pass the virus on. One way to bring this number down is by increasing the opportunities for people to test outside of traditional settings.”

A spokeswoman for the Department of Health said: “We are considering our current policy on HIV home testing and whether we need to repeal the current regulations.

“Key to any repeal will be the availability of a quality-assured testing kit suitable for home use. We are working with the THT and others in taking forward our review.

“HIV testing is widely available from open-access NHS sexual health clinics. Our advice is clear – if you think you might be at risk from HIV, contact your local sexual health service or your GP for a test.”

Original Article by the Press Association

The Terence Higgins Trust policy document: HIV and Sexual Health: 12 things the Government can do was launched a few days ago, at this year’s Conservative Party Conference. The document, which includes a section on home testing, is available to download from here www.tht.org.uk/12things.

Are you interested in having a HIV test?  We offer a completely free and confidential rapid HIV test and you’ll get the results within 60 seconds from a simple finger prick test. We use the Insti HIV test produced by BioLytical laboratories. The test is 99.96% accurate from 90 days post contact for detecting HIV 1 and 2 antibodies. We also have a mobile testing van which is often out in communities providing mobile rapid HIV tests. Appointments are not always necessary, if you would like a test, please contact us on 0116 2559995

STAY UPDATED

or subscribe via email

Report Warns Of Large HIV Rise In UK By 2012

The number of people living with HIV in the UK could reach a record 100,000 cases by next year, according to a new report.

The Health Protection Agency (HPA) predicts that unless more focus is given to HIV prevention and routine testing, more people could become infected.

It is 30 years since the first case of HIV was formally diagnosed, and since then there have been several major breakthroughs in medical treatment resulting in longer life expectancy for those infected by the virus.

But some medical experts now believe because of the success of anti viral drugs in prolonging the lives of carriers, it has led to complacency.

HPA figures show that in the last three decades 115,000 people have been diagnosed with HIV in the UK alone, with 27,000 people having gone on to develop full-blown Aids – and 20,000 of those having since died.

We need a complete and wholesome approach to treating HIV and most importantly help prevent its spread – Dr Rupert Whitaker, a long-standing HIV survivor

But what is worrying the medical profession and campaign pressure groups is that, despite all the medical advances over the last three decades, the number of HIV cases in the UK is expected to rise next year to 100,000 and some of those cases will be people who do not yet realise they have been infected by the virus.

Dr Valerie Delpech, Head of HIV surveillance at the HPA, believes widespread testing is urgently needed to help get new cases diagnosed.

“It is so crucial when treating someone who is HIV positive as quickly as possible. That way their lives can be prolonged considerably,” she said.

“Provided someone is tested within the early stages of infection, so they have only had HIV for a short time, and they receive effective medication followed up by effective therapy, then their life expectancy is very good.

“In fact we can safely say HIV is no longer a life threatening illness but a chronic life long condition which if treated correctly can mean people can live to their normal life expectancy.”

One person who is living proof that early diagnosis and treatment can work is HIV carrier Janet.

She is 29, from London, and was diagnosed when she was 19. Janet, who does not want her full name to be disclosed but is happy to campaign for change, now has a two-year-old son called Zion. She is also expecting another baby in three months.

She said being diagnosed quickly and taking the right drug treatment has meant she has safely given birth to her son, who is not infected, although she won’t know if her unborn child is negative until it’s three months old.

“The medication has saved my life. The side effects are very heavy – back pain, headaches and I often feel like I’m living in the body of a 90 year old but I’m only 29,” she said.

“But I have to take the medication for the rest of my life, I know that, in order to live, which is fine.”

Dr Rupert Whitaker is another long-standing HIV survivor. He contracted the virus in 1981. His partner, Terrence Higgins, who was one of the UK’s first public figures to actively raise awareness about the virus, also became HIV positive and later died of Aids complications.

Dr Whitaker, who co-founded the Terrence Higgins Trust in memory of his former partner, believes that because anti-viral pills are so successful people have become complacent.

“These pills are extremely expensive and with time we just can’t afford to keep just giving them out. We need a complete and wholesome approach to treating HIV and most importantly help prevent its spread.

“In the 1990s when everyone was really scared about HIV and AIDS, and people were dying all around me, the various agencies were all working together to fight it… But I definitely feel that over time things have been allowed to slip.

“People have definitely become complacent over the years because of the medical advances. But you can’t just treat HIV by popping a pill,” he said.

“We have to become more preventative to stop people contracting the virus in the first place.”

LASS offer a completely free and confidential rapid HIV test and you’ll get the results within 60 seconds from a simple finger prick test.  We use the Insti HIV test produced by BioLytical laboratories.  The test is 99.96% accurate from 90 days post contact for detecting HIV 1 and 2 antibodies.

Appointments are not always necessary, if you would like a test, please contact us on 0116 2559995

STAY UPDATED
Follow LASS on Twitter
or subscribe via email

Get free access to online services, tools and community spaces for everyone living with HIV in the UK.

 

The Secretary of State for Health, The Rt Hon Andrew Lansley MP, and the Terrence Higgins Trust have launched a new resource, Life Plus, which will transform the way people with HIV manage their condition long term. Created by the Elton John AIDS Foundation (EJAF), HIV and sexual health charity Terrence Higgins Trust (THT) and people with HIV, Life Plus is an innovative set of online, face to face and telephone support services that delivers cost effective, personalised support for people living with HIV in the UK.

Andrew Lansley met service users at the Harrison Wing, Guy’s and St Thomas’ Hospital, London to find out first-hand the impact that Life Plus will have. St Thomas’ is situated in South London, which has the highest prevalence of HIV in the UK, and is a leading hospital for HIV care

Currently around 86,500 people are living with HIV in the UK, and every year around 7,000 more are diagnosed. This creates mounting pressure on an already constrained NHS. Life Plus, funded by the Elton John AIDS Foundation and developed in partnership with HIV organisations George House Trust and National AIDS Manual (NAM), is designed to ease this pressure by offering vital free support to help people with HIV live long and healthy lives, whilst relieving clinical expertise to wholly focus where it is most needed.

Life Plus will partner NHS clinical care by providing face to face support in areas of the UK which have high rates of HIV prevalence; Brighton, Birmingham, Glasgow, Cardiff and Manchester. Clinic-based Health Trainers in each of these cities will provide people living with HIV with one-to-one support, to become experts in managing their condition and the social care challenges that may jeopardise their health and medical treatment.

As part of the programme, a dedicated new website, www.myhiv.org.uk, will also enable people living with HIV to access interactive services tailored to their individual needs, requirements and stage of diagnosis, wherever they live in the UK, including:

· The option to privately and securely store information on their health and treatment so they can monitor and actively manage their HIV and stay adherent to treatment

· A reminder function for clinic appointments

· Forums for people to build communities and offer support to each other

· Online counselling and advice

· Information on how to become an active campaigner on HIV issues

For people who don’t have access to the internet at home, THT is working with HIV clinics, including the Harrison Wing at St Thomas’ Hospital in London, to offer free internet access to www.myhiv.org.uk and video conferencing facilities so that people can talk to experts from THT in clinics. People can also access confidential support from the charity’s helpline, THT Direct, on 0845 12 21 200.

Sir Nick Partridge, Chief Executive for Terrence Higgins Trust said: “Life Plus is a very exciting new type of service provision and comes at a critical time to support the higher numbers of people living with HIV in the UK. HIV is a complex condition so it’s vital that people get the best possible level of support, accessible in a multitude of ways, to ensure they remain healthy.

“HIV service providers and clinicians across the country have been fundamental in shaping Life Plus and these services have been designed to reach people in both rural and urban areas, whether they’re newly diagnosed or have been living with HIV for many years. Thanks to the Elton John AIDS Foundation these services will revolutionise support for people with HIV, helping them to manage their health and treatment more effectively.”

Sir Elton John, Founder of the Elton John AIDS Foundation said: “In many ways, the UK response to prevention and treatment of HIV has led the world. I am proud to be launching a new era in HIV services, delighted to be working with THT again, and hopeful that this approach may see opportunities for the management of other long term chronic conditions.”

If you have any questions or comments, please contact them at: membership www.tht.org.uk/membership

STAY UPDATED
Follow LASS on Twitter
or subscribe via email