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Monday, 06 June 2016

Terrence Higgins Trust hosts conference for first generation growing old with HIV

Written by The Editorial Team

A conference for over 50s living with HIV has been praised as ‘empowering’, after more than 100 people attended the sell-out event in London.

On the weekend of HIV Long-Term Survivors Awareness Day, Terrence Higgins Trust’s Health, Wealth and Happiness Project hosted the ‘Living Positively’ conference – a exploring ways to develop emotional and physical wellbeing whilst ageing with HIV.

The over 50s are the fastest growing group of people living with HIV. New HIV diagnoses in over 55s has nearly doubled in the last decade from 587 in 2004 and 1100 in 2014. 

Advances in HIV treatment mean that people with HIV are living longer and we are now seeing the first generation of people growing old living with HIV, entering unchartered territory.

The challenge is now how to address the complex needs of people ageing with HIV and helping them to live well while facing the uncertainty of what lies ahead. 

At the Living Positively conference, older people living with HIV discussed everything from changes to welfare benefits to relationships and dating.

Speakers included Dr Dana Rosenfeld and Dr Laura Waters, whose presentations explored mental health and quality of life, as well as age-related illness and the role of HIV medication.

Jane*, a 51 year old black African woman living with HIV, who attended the Living Positively conference, said: “I sometimes can’t believe I am here now. In 1997 when I was diagnosed with HIV, I was given just six months to live. It was a very bad time for me as I was very ill.

“Terrence Higgins Trust supported me back then with the buddy scheme, hardship fund and their advice and support, but I was reluctant to use all of the help being offered as I thought there wasn’t much point in using the help now, when I am already living with HIV and am so ill.

“Since then, a lot has changed, I have met other people living with HIV, going through the same thing I am, and medication has improved. Through the Health, Wealth and Happiness project I have learnt more about things that affect me now I am older, like the menopause, benefit changes, the importance of healthy eating and my favourite, computer skills.

“Stigma is still a big problem though, and as I grow older I become more and more scared about how I will be treated and what will happen when I need one–to-one care, because some people today still do not understand the realities of what it is like to live with HIV.

“It was great to be able to talk about these issues at the Living Positively conference with people who are in the same position and share similar concerns.”

The pioneering Health, Wealth and Happiness Project, from the UK’s leading HIV and sexual health charity, focuses on the needs of people over 50 living with HIV, offering tailored services to improve their emotional, physical and financial wellbeing.

The project provides advice, peer support, social activities and group work in Brighton, Bristol, London, Manchester and West Midlands.

Ian Green, Chief Executive of Terrence Higgins Trust, said: “As a person over 50 living with HIV, I have seen myself the advances in treatment that mean today we can expect to live as long as anyone else.

“With the first generation of people growing older with HIV, comes challenges and uncertainty. Isolation is a major issue, and we also know that many people are worried about having to go into a care home, changes to their benefits, housing issues and relationships and dating.

“With the Health, Wealth and Happiness project, our aim is to empower older people to live well with HIV.

“The conference has been a fantastic opportunity to bring people together and start a discussion about what it means to be in this first generation of people to grow older with HIV.

“Together we are gaining better understanding and knowledge of how to address the complex needs of people ageing with HIV.”

Peter*, a 52 year old gay man from Cardiff living with HIV in London, said: “Now in my 50s I am more in control of my HIV and happier than ever before.

“With the support of Terrence Higgins Trust, I have come out the other side of isolation to meet new people like me, living with HIV. It’s great to have the support to fully understand what it is like to be the “Guinea pigs” who are growing older with HIV.

“When I was diagnosed in 1992 it was a different time, it was very scary and I went off the rails a bit as I didn’t know what to do. But today I have just moved into a new flat, I have made new positive friends who understand what I am going through, and my condition is managed by taking just three tablets once a day.”

Find out more about Terrence Higgins Trust’s Health, Wealth and Happiness Project here

Pictured: l-r, Adrian Beaumont, Health, Wealth and Happiness coordinator - Terrence Higgins Trust,  Dr Dana Rosenfeld, Principal Investigator, HIV and Later Life - Keele University, Dr Laura Waters, Consultant GU/HIV Medicine/HIV and hepatitis lead CNWL, based at Mortimer Market Centre and Ian Green, Chief Executive of Terrence Higgins Trust.