Disadvantages for HIV+ Over 50s

posted: 22/07/2010

Older people with HIV face many disadvantages, study finds
Most people with HIV aged 50 and over can expect to live a near normal lifespan thanks to modern HIV treatments, but are substantially more disadvantaged than their people of a similar age who don’t have HIV.
 

According to 50 Plus, the first national study of ageing and HIV, launched in Vienna at AIDS 2010, the 18th International AIDS Conference, older people living with HIV have worse health, are poorer, and fear for the future.
 

Other health problems common

Findings show that older people living with HIV are twice as likely to experience other long-term health problems alongside HIV, such as high blood pressure, kidney and liver problems and arthritis, with two thirds having treatment for these other conditions.
 

Worse off and money worries

Older people with HIV are financially worse off than other people of the same age without HIV. Older positive people are less likely to be working, less likely to have savings or pensions for their retirement and more likely to be on state benefits. Many have serious financial worries about the future. Older people with HIV are less likely to be homeowners and more likely to live in social or private rented housing. One said: “Since I was diagnosed in 1985 I regarded this as a death warrant and ceased to make any pension provisions.”
 

Good health information is top priority

Older people with HIV say having good quality health and treatment information is their highest priority, but three quarters fear needing health and social care in the future. As another person said: “I also fear that, in case I need to be cared for, the carer would be as ill-informed and prejudiced about HIV as the rest of the general public.”
 

Involving older people

The 50 Plus survey was designed with older people living with HIV, and it investigated the needs and concerns of 410 people, to help raise awareness of the issues that this group face and to collect evidence of the specific social care needs.

The 410 people surveyed are one in 25 of all the people aged 50 and over who are using HIV clinics in the UK – there are now well over 10,000 over 50s with HIV, with almost 1000 in the NW of England. Within the next ten years the number of over 50s with HIV will almost double.
 

While most over 50s living with HIV are gay men and white, there are numbers of heterosexual men and women including Africans, among other ethnic minority people.  

Terrence Higgins Trust’s Head of Policy, Lisa Power, said: “As a result of effective treatment options, and our ageing population, the over 50s are now the fastest growing group of people with HIV in the UK, and there’s a long way to go regarding support for this group. Older people with HIV are living with high levels of uncertainty about their future health and social care and need substantially more support than their peers.
“The information we’ve gathered through ‘50 Plus’ is vital in giving us a better understanding of the unique problems that older people with HIV face on a daily basis in the UK. With this insight we can develop support services that are fully tailored to this group’s needs to ensure they have the same quality of life as their peers.”
 

Other key lessons

Other findings from the report show that:

• Older people with HIV are a rapidly growing and diverse group. The majority of this group are gay and bisexual men but there are also high numbers of African migrants and white heterosexuals. Some are long-term survivors, whilst others have been recently infected - one in five (21%) were diagnosed in the 1980s but the greatest number (41%) were diagnosed since 2000.
• Whilst older people with HIV think very well of their HIV clinicians, many report poor experiences in primary care, including discrimination, ignorance and a low standard of clinical treatment, and use their GPs and generalist healthcare services less than older people in general. Many also fear that social care services, care homes and sheltered housing might be HIV prejudiced and/or homophobic.
• Many report feeling isolated and would like more social contact and support. Most prefer to find this through HIV organisations.
• Most were open about their HIV status in key relationships and usually get positive reactions; however, telling others about having HIV is still seen as risky.

In response to these research findings, Terrence Higgins Trust, Age UK and The Joseph Rowntree Foundation made five calls for action:

1. Improvements in healthcare to ensure access to good quality treatment in all settings and availability of better information to older people with HIV.
2. Better employment support, money management courses and benefits advice.
3. Action to deal with homophobia, HIV discrimination and ageism in all services, but especially in social housing, sheltered housing, care homes and health services (particularly primary care).
4. Improved emotional support and opportunities for social contact, to prevent isolation.
5. Greater cooperation and information sharing between organisations and services for older people, and those for people with HIV, to improve policy and practice.

Michelle Mitchell, Charity Director at Age UK, said: “This report clearly shows that the problems many of us face in later life, such as financial pressures, deteriorating health and isolation are all exacerbated by the impact of HIV on people’s lives. Now people are living far longer with HIV than ever before, we need to shift the focus on support services to improving quality of life. To achieve this, it is vital that we increase awareness and understanding of the needs of this group across a range of health, social care, housing and advice services.”
 

Terrence Higgins Trust, Age UK and other HIV organisations like George House Trust, will be using the findings to help development services.
 

50 Plus    4 page summary available now 

The full 50 Plus report will be available from October 2010 at The Joseph Rowntree Foundation

Further data, including all statistical charts and the full literature review, will appear in the autumn in a special section of the THT website.
 

About the study

50 Plus research was conducted through an online and paper questionnaire and 40 in-depth interviews from a sample of adults aged 50 or over with HIV across the UK in 2009. The 50 Plus report is was based on the survey findings. The questionnaire was devised with the support of a Community Advisory Panel and interviews conducted by trained community researchers living with HIV. A literature review and visits to existing ageing and HIV work in the US were also undertaken. Age UK is the name for the merger of Age Concern and Help the Aged. The Joseph Rowntree Foundation (JRF) is one of largest social policy research and development charities in the UK. It aims to influence policy and practice by searching for evidence and demonstrating solutions to help overcome the causes of poverty, disadvantage and social evil.

Source
 

Gay-Hate and HIV-Hate

posted: 01/04/2010

Blow the Whistle on Gay Hate is the name of a new booklet for gay and bisexual men about challenging gay hate, stigma, blaming, and abuse. This booklet could help people with HIV blow the whistle on HIV hate. Whether it is hate because of HIV, race, sexuality, gender, or disability, what you can do about it is much the same, so this booklet should help people with HIV, whether or not you are gay.

download the booklet Blow the Whistle on Gay Hate

HIV Hate Action

Have you been

• hit
• called names
• spat at
• had your things stolen or damaged

because of HIV?

That's harassment and it is a crime.

A new project helps people dealing with HIV harassment including HIV called Working it Through Together. It's run by Breakthrough UK, who are based in Manchester.

contact Working it Through Together 0161 273 5412

Official Hate Inquiry

HIV hate is also on the agenda for an official Inquiry into hate and harassment of people with disabilities (HIV counts in law as a disability). The Equalities and Human Rights Commission has started a formal Inquiry.

This is a serious step - it means they know the law is not working as it should. Public bodies (like councils and the NHS) have a legal duty to get rid of disability (including HIV) harassment but recent cases show councils are failing. 

After this formal Inquiry the Equalities and Human Rights Commission can order public bodies to do things. We think this is a great opportunity to push for some real action against HIV stigma from public bodies. We're working with NAT on this and have told the EHRC they should include HIV in their Inquiry. More details here   

Stonewall Gay Hate pages

Working with HIV

posted: 27/08/2009

'Working with HIV' is the first major survey of what it is like to be living with HIV and in paid work in the UK. George House Trust service users and staff contributed a lot of information and ideas to this new report from NAT (National AIDS Trust).
 

The research may surprise many because it shows that the health effects of HIV have little impact on very many people’s ability to work - thanks to better treatment. However the stigma surrounding HIV still creates barriers in work.

1,800 gay men living with HIV took part in the survey, which was helped greatly by focus groups of gay men and black Africans living with HIV. 38 people joined several focus groups across the country including in Manchester. The research, conducted with City University, London, is summarised in the report ‘Working with HIV’. 
 

The Guardian report on this includes an interview with Andy Hewlett, a Metropolitan police officer working in London, who was diagnosed with HIV 15 years ago.

More than half say HIV has no impact on their work
The research found people with HIV working in a wide range of jobs at all levels. Over half (58 per cent) surveyed said living with HIV had no impact on their working life. However one in ten people said treatment side effects did have some effect. Being diagnosed with HIV or changing treatments were also flash-points when HIV had an impact.
 

1 in 3 have no time off for HIV
Despite this, over a third (34 per cent) had not taken any days off to attend HIV clinic appointments in the previous 12 months.
 

Telling people at work goes well for most
60 per cent had told someone at work about their HIV, over three-quarters of whom (77 per cent) reported a generally positive reaction. But fear of something bad happening if you tell someone at work bothers almost 1 in 3.

 Not telling people at work was usually explained by saying there was ‘no-need’, although 53 per cent feared poor treatment and 57 per cent worried their confidentiality would be breached.
 

Discrimination
1 in 5 of the people who had told someone at work about their HIV had experienced discrimination in their current or previous job. The most common forms of discrimination were being treated differently, or excluded from things, and breaches of confidentiality. 4 out of 10 people who had disclosed their HIV status and then faced discrimination in a previous job believed they had lost their job because of their disclosure at work.
 

Lessons for employers
The research looked into what kinds of reasonable adjustments people with HIV asked their employers for. The most common requested were

• time off to go to clinic appointment, and
• flexibility over working hours.

Both of these are simple and inexpensive requests for employers to agree.
 

Deborah Jack, Chief Executive of NAT, comments:
“The overall picture for people with HIV at work is a positive one. It is important for employers and HR [Human Resources] professionals to realise that people with HIV can and do make valuable contributions to the UK workforce. Today, often it is not the health of people with HIV that affects their working ability but attitudes of employers or colleagues.
A cultural change is needed in workplaces across the UK. Simple, proactive steps by employers to show they are understand HIV and would be supportive of disclosure will have a dramatic effect on the working lives of people with HIV.” 
 

Professor Jonathan Elford, City University, London, comments:
“This is the first large-scale research project in the UK to explore the experiences at work of people living with HIV. This kind of research is vital for building up a true picture of the reality of living and working with HIV in the UK today as well as the challenges people still face.
The overall picture presented by the study is a positive one. People with HIV who had a job were generally satisfied with their working lives. Yet, important areas for improvement remain. Disclosing your HIV status at work remains difficult; discrimination still goes on; and some people are still unaware of their employment rights under the Disability Discrimination Act. In addition, fewer people with HIV have jobs compared to the national average.” 
 

Recommendations for employers and HR professionals include:

• Have a specific policy that addresses HIV and incorporates it into diversity or disability training
• Understand their obligations under the Disability Discrimination Act 2005, the sorts of adjustments that people living with HIV may need in the workplace and the ease with which they can be accommodated
• Take proactive steps to raise awareness of HIV at work (e.g. by marking World AIDS Day)

summary of the report Working with HIV

full report Working with HIV

For information and resources about HIV at work from NAT such as free to download Employers pack

Help Stop Media HIV Bias

posted: 06/04/2009

People living with HIV are being encouraged to help stop the media bias around HIV, by joining National Aids Trust's (NAT) new Press Gang.

If you get angry when HIV is sensationalised or misrepresented in the media, want to respond somehow and set the record straight, or make your own statement, NAT's Press Gang could help you make your voice heard.  

Press Gang is an online group of people living with HIV who are interested in improving how the media portrays HIV, and the people it affects.

How could I help?

By joining Press Gang you will be helped to challenge the media. You will get

• Stigma Alerts by email with links to discriminatory news stories as and when they break to enable you to respond quickly and easily
• Weekly updates on the latest stories about HIV in the media
• Support and advice on contacting journalists, contributing to web discussions and debates, making a complaint, sharing your stories and writing letters to the editor.

This is an online group supported by NAT designed to make it easier for people living with HIV to have a say in how the media talks about HIV and the people living with it.

Quickly and simply you can use a home PC, (or PDA, iPhones, public computers), from almost anywhere and help by telling the media what you think.

The NAT Communications Team already keep a daily watch on national and regional press and they will give you the weblinks to any discriminatory news stories. Some days and weeks there is nothing wrong that needs challenging, other times there's a rush, when an HIV story gets picked up by newspapers around the country.

It is really important to respond to bad press immediately. This is where the Press Gang is essential. The most effective means of challenging stereotypes and changing the public’s attitude around HIV is for the media to hear from people living with HIV.

Interested?

Want to do more to improve the public’s attitude towards HIV and people living with HIV?

Sign Up with NAT as an online NAT Press Gang member (confidentially) and NAT will take it from there, by providing you with written guidance, helpful hints and a regular point of contact at NAT for questions and support. Sign up by email or call 020 7814 6730.

Need More Information?

To find out more email Brad Hepburn, NAT's Community Advocacy Coordinator.

NAT has a web page of advice for journalists and editors and publishes media guidelines too.

HIV, Police and Prosecutions - Call for Change

posted: 29/01/2009

A new report by the Terrence Higgins Trust (THT) launched yesterday at the House of Commons has revealed a systematic mishandling of complaints for alleged criminal HIV transmission in England & Wales. The report, Policing Transmission was welcomed by the Association of Chief Police Officers (ACPO), which acknowledged that “too many times we have got it wrong". George House Trust was represented on the panel which reviewed police handling of some of the key cases.

There have been “scores, if not hundreds” of arrests since the first conviction for reckless HIV transmission in England and Wales (Mohammed Dica in October 2003), noted THT's Sir Nick Partridge speaking at the launch of the report in the House of Commons, hosted by Lord Norman Fowler, Vice Chair of the All Party Parliamentary Group on AIDS.

Investigations harm even when they are dropped

Sir Nick said that whilst most police investigations were dropped due to a lack of evidence, during the course of these ‘failed’ investigations - which had lasted up to a year - “lives had been turned upside-down and some came close to being destroyed”.

Arrests every fortnight

During the period 2005-6, there was an average of one arrest every two weeks. Concerned at this number of arrests and aware of the cost, in terms of “public resources and private misery”, THT approached ACPO and the Metropolitan Police Service (MPS) in order to examine the role of the police in criminal HIV transmission investigations.

This resulted in detailed, but anonymised, police notes from six cases that occurred between 2004 and 2007 (some prosecuted, some not) being made available to a community advisory panel that included representatives from HIV civil society organisations, including the National AIDS Trust, George House Trust and the African HIV Prevention Network. The panel reviewed the notes in collaboration with ACPO and the Metropolitan Police Service (MPS) and this report publishes their findings and recommendations.

Good police practice found but mainly examples of failings

The report found that although there were some examples of good practice, much more was found to be lacking, including:

• A poor police understanding of HIV, leading to inappropriate management of cases.
• A lack of clarity amongst police officers about the current law, and what is, and what is not, an offence. (THT is aware of many investigations following allegations of unprotected sex without disclosure where there was no transmission, which is not even an offence in England & Wales.)
• Unnecessarily long and drawn-out investigations, ranging between four and twelve months for cases that did not result in prosecution, and between six and 34 months for those that did.
• Difficulties in reconciling the realities of HIV transmission with the evidence requirements for the criminal charge. The report points out that “police are having to manage cases brought under a law never designed for such scientific complexity” and notes that the police “repeatedly misinterpreted the strength of their scientific evidence”. This is a gentle way of saying the police were dazzled by scientific reports, and misread them to mean person A infected person B, to the exclusion of all other people, when science cannot prove this at all.

What should be done?

The report makes 19 recommendations, including:

• A dedicated police officer should be trained and made available in each force. This officer would specialise in criminal HIV transmission complaints and investigations.
• Easy to understand guides to HIV transmission, disclosure, and the law should be written and made available to every police officer.
• A series of standard questions should be developed to establish at an early stage whether a viable case exists.
• Wider investigations beyond the original complaint should only take place once it is established that the original complainant is HIV-positive themselves.

The price of prosecutions - three people's stories

At yesterday’s launch THT’s Sir Nick eloquently put a human face on the report by highlighting three people's stories of investigations which reveal how difficult, complex and sensitive allegations of reckless HIV transmission are for all parties involved, including the police.

• ‘David’ was accused of recklessly infecting two men and, following his arrest, was held in custody for several months and refused bail because the police erroneously believed he was “a danger to the public”. After phylogenetic analysis had been performed on all three men, it became clear that ‘David’ could not have been the source of either man’s infection, the case was dropped and 'David' was finally released from custody.
• ‘Cesar’ only discovered he was HIV-positive when police told him when they arrived on his doorstep to arrest him for reckless HIV transmission. (Since one of the essentials for this ‘crime’ is to be aware of one’s HIV status, this was a complaint that could not succeed)
• ‘Elizabeth’ accused her married lover of recklessly giving her HIV and complained to the police. However, charges were dropped after months of investigations, which included detailed sexual histories and the release of sensitive medical records, since the evidence suggested that ‘Elizabeth’ had, in fact, infected her lover.

Trying hard but nearly HIV clueless

Sir Nick said that the report suggests that all complaints and investigations were done in good faith, but that in almost every case, the lead officer had neither enough knowledge of HIV issues, nor anywhere to turn for guidance.

He added that the police appear to have an understanding of HIV that is “at least ten years out of date", and that this is not unique in the criminal justice system and is more a reflection of the general public’s lack of knowledge and attitudes about HIV.

We know that HIV ignorance is widespread throughout the criminal justice system - most Crown Prosecution Service prosecutors are as ignorant about HIV as the police, many defence solicitors and barristers are hardly better, the forensic laboratories often don't point out the limitations of their supposed "scientific proof", and judges sometimes appear to share the widespread ignorance. And it is unlikely juries are any better informed than these other players in the criminal justice system.

Lancashire Deputy Chief Constable welcomes report

Mike Cunningham, Deputy Chief Constable of Lancashire, spoke on behalf of the Association of Chief Police Officers (ACPO) which welcomed the report. He said that he appreciated the fact that ACPO had had the opportunity to be part of the review process, and not just to be the subject of it.

“Too many times we have got it wrong,” he admitted. “We want to put things right and not just deny [that things have gone wrong].” Referring to the case studies presented by Sir Nick, he added that the police must be aware of the difficulties involved and “humanise” each individual affected by an investigation.

Kit Malthouse, London’s Deputy Major for Policing, and deputy chairman of the Metropolitan Police Authority also welcomed the report which he hoped would lead to the production of an “easy guide” to HIV for London’s police. He added that with yesterday’s appointment of Sir Paul Stephenson as the replacement for Sir Ian Blair as Metropolitan Police Commissioner, policing in the capital would become “more open”, and that the London police service was committed to providing “the best possible service to everyone”.

Next Step - a Good Practice Guide

The project will now begin its second stage - the National AIDS Trust will now lead the  production of good practice guidance for the police in criminal HIV transmission investigations, supported by THT, ACPO, the MPS and a community advisory panel, to which George House Trust hopes to contribute.

Policing Transmission report 

also available direct from THT here.

Source