Loss of Hero to HIV Youth

posted: 08/04/2010

"I guess you could say I live life to the full – I'll do anything [rather] than have the words HIV on my tombstone," wrote Clint Walters recently.

Clint was just 17 when he was diagnosed with HIV in 1996, dedicated his life to combating ignorance and supporting others who were struggling with the illness. In one year alone he ran the London Marathon, abseiled off South Africa's Table Top Mountain, swam with sharks, skydived, and cycled from London to Paris to raise money for charity.

But on Sunday, aged 31, he died at home of a sudden heart attack in south London. Yesterday tributes were about a man who was an "amazing inspiration" and a "walking talking hero, who was so humble". "Clint just had the most incredible energy," said his friend Neil Parrett. "He was a force of a personality, impossible to resist. He was always laughing, always made you feel special. I just can't believe I am never going to hear him laugh again. He was a real inspiration, probably the nicest guy I have ever known."

Growing up in a small town near Oxford, Mr Walters barely knew about HIV and had had only two relationships when his mother took him to the doctor with breathing and chest problems. The diagnosis was devastating. "You can't describe the pain of the diagnosis. My mum didn't even know I was gay," he said four years later.

Treatment starts new life
He initially "lost all hope" but began treatment and started to regain his fitness. He left hospital in time to sit his A-levels and later travelled to San Francisco to work and study at a University of California Aids Health project. "My whole world opened up for the first time," he wrote. "I came to terms with my diagnosis and worked at several amazing agencies, learning as much as I could. I decided to head back to the UK to provide the support I never had."

Talking and shouting about HIV
Despite admitting it was difficult, even as an adult, to broach the subject of his HIV-positive status with strangers, he opted to "shout it from the rooftops" to break down the taboo, convinced that ignorance fuelled increasing infection.

HIV youth project
In 1999, he founded Health Initiatives for Youth UK   to provide peer support to young people living with HIV and started touring the country to take the message to colleges and schools, hoping his frank talks would teach teenagers to learn from his mistake. He said: "My aim has been to give the children something I never had – a young outspoken face of HIV to which they can relate."

"Rather than let it beat him, he focused on life and tried to make it better for other people in the same situation," added Mr Parrett. "He took calls from young people all over the country and people came to stay with him if they were struggling to come to terms with the diagnosis. He was completely selfless."
 

Clint Walters was doing well on his HIV treatments and doctors were pleased about his fitness levels. He died after suffering a heart attack on Sunday. Right up to the very end, his social networking website read: "Mood: Optimistic".
 

George House Trust's Positive Speakers programme provides talks and HIV awareness in schools and colleges in NW England

Source

infomation on Health Initiatives for Youth UK

Wanted - Positive Youth Camp Leaders

posted: 18/03/2010

Are you HIV+? Are you aged 18 - 24 on August 23 2010? Want to help run the first ever UK summer camp for HIV+ young people?

CHIVA (Childrens HIV Association) is recruiting fifteen Camp Leaders to help run the first ever CHIVA Summer Camp for HIV+ children and young people, in the last week of August 2010.

Along with staff and volunteers, Camp Leaders will help to run the Summer Camp. They will offer support to participants, organise events and activities and keep the camp running smoothly.

Training and Expenses Included
All Camp Leaders will need to attend a four day training session from Thursday 10th - Monday 14th June 2010. Alongside fun activities, Camp Leaders will receive accredited training from Youthforce on the 'Essentials of working with young people'. All expenses will be paid.

 

Over 25? - volunteer instead

If you are HIV+ and aged 25 or over in late August, consider becoming a CHIVA camp volunteer instead. Visit the Summer Camp webpage and download volunteering details and an application form - righthand column of web page.
 

Becoming a Camp Leader - apply before 30 April

For more information download the information pack and application form. The application form must be completed and returned by 5pm April 30 2010.

If you know or work with HIV+ young people please print off the advert about becoming a Camp Leader and pass this on to them.

If you would like any more information about being a Camp Leader please email Tom Burke.
 

Test and Treat to End HIV in 40 Years

posted: 22/02/2010

A global public health strategy for testing and treating everyone with HIV is now being considered.
Health officials are considering a radical shift in the strategy against HIV that would see everyone tested for the virus and people with HIV then put on a lifetime course of drugs. The strategy, which would involve testing most of the world's population for HIV, aims to reduce the transmission so much that HIV would die out completely over the next 40 years.
 

Brian Williams, professor of epidemiology at the South African Centre for Epidemiological Modelling and Analysis in Stellenbosch, said that HIV transmission could be stopped within five years with the use of antiretroviral drugs (ARVs). "The epidemic of HIV is really one of the worst plagues of human history," Williams told the American Association for the Advancement of Science meeting in San Diego. "I hope we can get to the starting line in one to two years and get complete coverage of patients in five years. Maybe that's being optimistic, but we're facing Armageddon."
 

Two years of trials now
Major trials of this universal test and treat strategy are planned in Africa and the USA and will affect whether this becomes part of global public health policy in the next two years.
More than 30 million people are infected with HIV globally and two million die of the disease each year. But across the globe only 12% of those living with HIV get the treatment they need. The disease is overwhelmingly prevalent in sub-Saharan Africa, which accounts for a quarter of all HIV cases globally. Half of these are in South Africa.
 

Broadly the epidemic calculations are that a person with HIV may pass on HIV to between five to 10 others in their time with HIV. Treating people within a year of becoming infected can reduce transmission tenfold, enough to cause the HIV epidemic to die out.
 

Trials plans
In the trials, people will be offered HIV tests once a year, either as routine when they visit their GP, or through mobile clinics in more remote regions. Those testing positive will be put on a lifetime course of ARVs.
"Over the past 25 years we have saved the lives of probably two to three million people using antiretroviral drugs, but almost nothing we have done has had any impact on transmission of the disease," Williams said. "We have stopped people dying but we haven't stopped the epidemic."
If patients take ARVs when they should, the amount of virus in their bodies should fall so low that it becomes undetectable, and they are then extremely unlikely to pass the virus on.

Five years to see the results but worth the price
"The question is, can we use these drugs not only to keep people alive, but also to stop transmission and I believe that we can. We could effectively stop transmission of HIV in five years." Scientists estimate that the cost of implementing the strategy in South Africa alone will be $3bn-$4bn a year. The world currently spends $30bn (£19.4bn) a year on HIV research and treatment, a figure that some experts believe will double over the next decade.
 

Sub-Saharan Africa has seen a dramatic rise in cases of tuberculosis among HIV patients, who are also susceptible to other infections because their immune systems are weakened.
"If you factor in all of the costs, in my opinion, doing this would be cost saving from day one, because the cost of the drugs would be more than balanced by the cost of treating people for all of these other diseases and then letting them die," Williams said. "We're killing probably half a million young adults every year in the prime of their life just at the point where they should be contributing to society and the cost of that to society is enormous," he added. "The only thing that's more expensive than doing this is not doing this."
 

HIV patients in southern Africa are more likely to take ARVs when they should than people living in developed countries, according to health officials. The finding gives doctors hope that the blanket administering of drugs might suppress the virus enough that it dies out naturally.

George House Trust comment 

This assumes a great deal. We are still a long way from providing treatment to all the millions of people in sub-Saharan Africa who need it. This strategy would require us to deliver HIV treatment for vastly more people, reliably, day after day, for decades.

The computer prediction of the epidemic will be correct as long as every African does get tested for HIV every year, everyone who tests positive then starts taking antiretrovirals immediately and 98 out of 100 do not miss a dose. How would people in the UK respond if outsiders decided all adults in the UK must have a HIV test every year?

We know gay men in rich countries use condoms far less now than before effective treatment became available in the mid 1990s, but somehow it's assumed heterosexuals in Africa won't also use condoms less.  

Source

 

Hear About HIV First Hand

posted: 24/11/2009

Often the best support comes from people who have the same kind of experiences. For people who do not have HIV, hearing people who do have HIV talk about their experiences can be powerful, help end misunderstandings and prevent stigma and discrimination.

The websiite Healthtalkonline's HIV section lets you find out about other people's experiences of HIV. You can watch or listen to videos of a wide mix of people living with HIV, read about their experiences and find reliable useful information about HIV, treatment choices and support.

Healthtalkonline is from the charity Dipex and is based on research into people’s experiences, led by experts at the University of Oxford. These personal stories help people with HIV, families and healthcare professionals, and the whole public to benefit from other people’s experiences.
 

Healthtalkonline has sections for many other conditions, as well as HIV, for example, depression.

HIV at HealthTalkOnline
They interviewed 50 people about their experiences of HIV infection and this is all organised into topics
It also has a section with information resources and a forum. Like many of the health forums on this site, the HIV forum is hardly used; anyone can read questions and comments, and to ask a question or reply, you need to register and log-in.
 

A more popular forum for people with HIV

A far more popular UK HIV+ people’s forum is run by a man with HIV, Hortilad
This has almost 1000 members and is active - 358 Posts on 182 Topics. You can see what the Hortilad HIV+ forum looks like here.
To use the Hortilad forum you need you to register, by choosing a user ID (made of any letters and numbers), a user name (shown on the forum when you post), and a valid email address (tick the box when you sign up, to keep your email address hidden).
 

Click here for HealthTalkOnline HIV Topics
 

Experiences of health care :
Getting a diagnosis
Getting health and social care
Making decisions about treatment
Taking anti-HIV drugs
Challenges of anti-HIV drugs

Looking after yourself :
Coping with mental health problems
Dealing with your thoughts
Talking about it
Becoming informed
Gaining power and strength
Spirituality and religion
Holistic health

Disclosure, discrimination and other challenges :
Secrecy and telling people
Support groups
Dealing with difficulties, finances and benefits
Work and routine
Prejudice, stigma and discrimination
Telling children and parents

Negotiating Sex :
How people became infected
Casual sexual encounters
Sex in relationships
Telling sexual partners

Looking ahead :
Living now & in the future
Illness and death
Finally, what people with HIV want you to know

The USA's Positive Project has more than 100 first-person stories told by people infected or affected by HIV/AIDS. 
On their site you can pick videos of positive speakers by gender, age, where they live, ethnicity, sexuality, topic.

Hepatitis C and HIV Outlook

posted: 18/11/2009

We can now say that having both hepatitis C and HIV doesn’t make it any more likely people will go on to develop an AIDS illness, but people do have a worsened chance of dying early.

One third higher risk of early death

A massive study of all the studies, a ‘meta-analysis’ of over 100,000 people has produced these findings. Since effective HIV treatment became available in the mid 1990s, co-infected people still have a 35% higher risk of death compared to people with just HIV.

The investigators believe that that “the major contributor to mortality among co-infected subjects during the HAART [highly active antiretroviral therapy] era is likely to be liver disease.”

HIV treatments mean that many people with HIV can look forward to a long and healthy life. However, the outlook for people with both HIV and hepatitis C is significantly shorter than for people who only have HIV.

Indeed, liver-related disease is now an important cause of death in HIV/hepatitis co-infected patients. Although there is a lot of evidence showing that HIV accelerates the course of hepatitis C disease, there is less agreement about the effect of hepatitis C on HIV disease progression.

A team of US investigators therefore conducted a meta-analysis of 37 studies published before April 2008 to see what impact hepatitis C had on HIV disease progression and overall mortality.

Before HIV treatments experience
Ten of the studies were before effective antiretroviral therapy became available. These studies showed that before HIV treatment became available, people with both HIV and hep C were slightly less likely to face worsening HIV than people who only had HIV – not a worsening in HIV health as you might have expected.
This part of the analysis had 4413 people with both hep C and HIV and 10,213 individuals who only had HIV.

After HIV treatments
They then looked at studies after 1996 when modern HIV treatments became available. This part of the analysis had 25,319 people with both hep C and HIV and 61,697 people with only HIV. These showed that people with both hep C and HIV were 35% more likely to die early compared with people who only have HIV.

Older, on treatment, how long with hep C
People with both hep C and HIV who were older, or taking antiretroviral therapy had an especially higher risk of death.

Moreover, the longer someone has both hep C and HIV, then the greater the risk of earlier death.

End outcome
The results from the meta-analysis depend on whether you stop the clock when people get AIDS, or follow people until they die. If you stopped the clock at an AIDS diagnosis, then the results show there is no difference between people who only have HIV and those with hep C as well. But in life, none of us have time machines that can prevent our dying. Therefore we should pay more attention to the 36% higher risk of dying early with hep C.

Seven studies in the meta analysis looked at how hep C and HIV affected disease progression, whether this was defined as either an AIDS diagnosis or death. Co-infected people were 49% more likely to get AIDS or die early than people who only have HIV..

Liver disease likely killer
“The majority contributor to mortality among co-infected subjects during the HAART (highly active antiretroviral therapy) era is likely to be liver disease”, comment the investigators. “The meta-analysis did not demonstrate increased risks of developing AIDS-defining events among co-infected patients”, conclude the investigators.
 

What next?
They recommend that “future studies that attempt to examine mortality among coinfected subjects should attempt to determine the relative contributions of hepatitis C viremia as a surrogate marker for liver disease risk, whether injecting drug use is current…, and whether broader application of hepatitis C treatment positively impacts mortality in co-infected individuals.”

Source

Chen T-Y et al. Meta-analysis: increased mortality associated with hepatitis C in HIV-infected persons is unrelated to HIV disease progression. Clin Infect Dis 49 (10): 1605-1615, 2009.

photo credit and hepatitis c gene quilt panel