27 Years Living with HIV

posted: 08/03/2011

A Nottingham man diagnosed with HIV more than 25 years ago when he was 14, talks to his local paper about his life. He tells us about sex, relationships, and how talking openly about HIV with partners and others has helped change his life.

Matt Gregory is now a HIV health and treatment worker with Terrence Higgins Trust in Nottingham. He said: "To see the relief on someone's face when the HIV test comes back as negative is a great experience. If some people do test positive it's good they know as it gives them choices. I would rather know I am positive than be kept in the dark. I have choices about treatment, lifestyle and sexual partners."

Read and find inspiration in Matt's story of living with HIV.

Positive Speakers from George House Trust

LifePlus - Web HIV Support

posted: 07/02/2011

Life Plus is a new website that hopes to transform how people live with and manage HIV for life. Life Plus is a fresh set of online, face to face and telephone personalised support tools for people living with HIV in the UK.

It’s been created by the Elton John AIDS Foundation (EJAF), Terrence Higgins Trust (THT), people with HIV, along with input from George House Trust and National Aids Manual.

There are around 86,500 people now living with HIV in the UK, and around 7,000 more are diagnosed every year. Life Plus should help take some of the pressure off HIV clinics by offering people with HIV support for living more independently, and longer and healthier lives, while HIV clinics focus help on the people who most need this.

Life Plus aims to support existing NHS HIV clinic care with face to face support, in the parts of the UK with the highest rates of HIV – Manchester, Brighton, Birmingham, Glasgow, and Cardiff. In each of these cities clinic-based health trainers will provide one-to-one support so people can become experts in all aspects of managing and living well with HIV.

The new website, myhiv.org.uk, provides interactive services to suit different people’s needs, including:
 

• privately and securely storing information to help track and manage your health and treatment better
• reminders for your clinic appointments
• forums to help you build HIV support communities and swop support
• online counselling and advice
• supporting HIV action campaigns

Watch YouTube of the interactive parts of the website

Life Plus has tailored versions specially for Africans, gay men, young people and everyone 

Sign up

To get the most out of the site and before you can use some of the sections (like the forums), you need to register. You register at a secure (https) webpage.

Anyone with HIV in the UK can register.  

Web and video conferencing at some clinics

For people who don’t have the internet at home (or on mobile), THT is working with some HIV clinics to offer free internet access to this website and video conferencing, so people can talk to experts while still at the clinic.

 

Elton's welcome

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.”

Anne Aslett, Executive Director of EJAF said: “ When some 30% of HIV patients in the UK who attend their first clinic appointment don’t return, and challenging ARV therapy can result in unplanned treatment breaks, we were looking for a programme that could really help people begin treatment if they needed it and stay adherent for the long term. Life Plus does this in a very flexible and responsible way that also complements and supports healthcare providers.”

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 increasingly high 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.”

 

Growing Life Expectancy

posted: 15/12/2010

Life expectancy with HIV continues to improve. People diagnosed during 2006-08 in the UK who then keep a CD4 count of over 200, now have a life expectancy with HIV the same as the general population. This was the good news from research presented at the 10th Congress on Drug Therapy in HIV Infection in Glasgow this month.
 

Ending late diagnosis would add 10 years

The bad news was that late diagnosis of HIV is still a serious problem in the UK. If everyone with HIV were diagnosed before their CD4 count fell below 200, this would raise life expectancy with HIV in the UK by an astonishing ten years.
 

Average life 13 years less – because so many people are diagnosed late
HIV still cuts 13 years off the average person’s life expectancy, the conference heard, although ten of those lost years are due to people coming for testing late, with CD4 counts already under 200.
 

Men’s average life expectancy loss is twice women’s
Men’s average loss of life expectancy due to HIV is twice that of women. Men tend to neglect their health more than women and are not routinely screened for HIV, whereas sexually active heterosexual women are routinely tested in pregnancy.  Late diagnosis is more common among men affecting men's average life expectancy. 

A great many deaths due to HIV in the UK are simply because people tested late. The death rate in the first year after being diagnosed with a CD4 count already under 200 is 5 times higher. But people who keep a CD4 count over 200 are living longer. People diagnosed in the last 10 years lost 6.5 years on average compared with the general population, and this is still improving. In the last two years the lifespan for people with HIV who keep a CD4 count over 200 has become near-normal, presenter Margaret May said.
 

UK study shows rising life expectancy

The Glasgow conference was hearing results from the UK CHIC cohort study which uses data from 30 different HIV clinics in the UK.

They looked back at nearly 18,000 patients who started HIV treatment between 1996 and 2008. They left out the people most likely to have the highest and lowest life expectancies, the people who started HIV treatment when their CD4 count was above 350, and injecting drug users.
 

Three-quarters of the group were male, 58% gay men, and 60% white. The median age for starting treatment was 37 and the average CD4 count for starting treatment was 166.
Seven per cent,1248 people, died and they worked out the death rates for each of four three-year periods (1996-99, 2000-02, 2003-05 and 2006-08).

These were used to work out an artificial standardised mortality - life expectancy at age 20: the remaining years of life that a person could expect at their 20th birthday, regardless of their age when diagnosed with HIV.
 

Rising life expectancy
During the earliest period (1996-99 when effective HIV treatment started improving life expectancy) life expectancy was 30 years; in other words, a person diagnosed with HIV between 1996-1999 could expect, if they were 20, to live until they were 50. (Please do not panic if you were diagnosed during these years and are now in your late 40s. You should have more than a few years left: life expectancy rises as we age, because people who survive are more likely to continue to live.)
 

People diagnosed between 2006-08 on average have seen a one-third improvement to 46 years; in other words, they could expect to live until 66.
 

Fewer years than the general population
However, this is still 13 years less than the average life expectancy at age 20 in the general UK population. In the general population the life expectancy difference between men and women has narrowed, with improvements in early death due to heart disease in men, to only two years; a 20 year old man can now expect to live till 80 and a woman till 82.
 

But in the population of HIV-positive people as a whole, men have a life expectancy at age 20 of 40 years (implying that a man diagnosed with HIV can expect to live until the age of 60) and women of 50 years: exactly why this is the case will take more research.
 

Life expectancies are continuing to rise, however. For people diagnosed with HIV during 2006-08 who keep a CD4 count of over 200, life expectancy at age 20 is now equal to that in the general population.
 

Margaret May said that if everyone got diagnosed with a CD4 count of over 200, this would improve life expectancies by ten years.
“In conclusion,” she said, “we join the advocacy for improved diagnosis and timely treatment, which could improve the life expectancy of people with HIV in the UK.”
 

Conference website

Image Get Tested, Live Longer

source with reference

'Dark Ages' HIV Life Insurance

posted: 24/11/2010

Life insurers are ‘living in the dark ages’ and stigmatising people with HIV, so that their needs are not met, according to research.
A survey conducted by the insurance intermediary Unusual Risks found that just a third of the top UK providers offer life policies to HIV positive people.

And only two of the four firms who do HIV life insurance carry out a full pre-sales quotation procedure. This means many people living with HIV are being asked to complete applications, submit to medicals and blood tests before they are given even a rough idea of what the insurance might cost.
 

Unusual Risks believe this is both non-competitive and unfair on applicants; it recognises that insurers have the right to decline applicants on medical grounds. They believe that insurers are not treating the life insurance needs of people living with HIV seriously enough.
 

Chris Morgan, marketing manager of Unusual Risks, was shocked and concerned by some of the responses from the providers it contacted about HIV life assurance.
 

"Only four responded yes, with some of the remaining companies even appearing shocked we had asked the question," he said. "Some of our findings and answers received from insurers regarding HIV life assurance are completely worrying. It is apparent that the majority of companies are still living in the dark ages and attaching a stigma to HIV. "The survey established that either companies are avoiding the issue completely by not offering cover, or in the main offering completely inadequate, over-priced products and services to HIV positive applicants.'

The four providers who originally said they would cover HIV positive clients, only two, Prudential and Zurich, accepted the test case put to them by the adviser.

Source

How Much Do You Know?

posted: 16/09/2010

LifeCheck  asks how much do you know about living with HIV? Test your knowledge by completing NAM’s HIV LifeCheck. After you’ve completed it, they’ll show you how to find out more about the things you are unsure of.
 

How does LifeCheck work?
They show you statements which are factually correct. Tell them whether or not you knew that already, or if you are unsure about it.
 

If you are not sure or don't know, they show you how to find out more.

It’s just a simple quiz for you to check if you know all of the up-to-date information about HIV you need.

To start, visit LifeCheck  here and click the button to begin.