Late Diagnosis - More AIDS Deaths

posted: 11/04/2011

12 years of UK HIV data shows that people diagnosed late with HIV (when the CD4 count was under 350) are 6 times more likely to die of AIDS than other people with HIV.Three quarters of all the people who die with an AIDS diagnosis were diagnosed with HIV late – when their CD4 cell count was below 350.
 

The researchers who gave this news to the British HIV Association Conference in Bournemouth last week, used the UK’s national HIV surveillance system data and death certificates at the Office of National Statistics, for the years 1997 to 2008.
 

While HIV deaths have plunged since combination treatments began in the mid 1990s, over 500 people with HIV die each year, and the HIV death rate is still five times higher than for the general population.
 

Over these 12 years, almost half the deaths were due to AIDS (49%). The proportion varied during this time but is not falling steadily, as we would hope.

The researchers milked the data by using advanced statistical tools. That is how they discovered that being diagnosed when the CD4 is below 350 makes people six times more likely than others with HIV to die of AIDS. They also estimate that 74% of all AIDS deaths are explained by late diagnosis. Even among people infected in the UK, 66% of AIDS deaths are linked to late diagnosis.

• Men were more likely than women to die of AIDS.
• But men who have sex with men were less likely to die than heterosexually infected men and women, whether this was in Africa, the UK or anywhere else.
• Injecting drug users had a much higher risk of death than all others.

The most common causes of AIDS deaths were PCP (a type of pneumonia common with advanced HIV illness), other AIDS-related pneumonias, non-Hodgkin's lymphoma, TB and neuro-cerebral causes.
These findings make very clear how important it is to reduce late diagnosis – NorthWest England is the worst region in England for late diagnosis.

Source with link to reference

Treatment Breaks Long Payback

posted: 19/01/2011

Eight years after some people with HIV took a break from taking their anti-HIV treatment, their treatment break continues to have a harmful effect. People having treatment breaks see smaller rises in their CD4 cell count, more HIV-related illness, and tend to die earlier. This new Swiss research also shows that the longer the break from treatment was, the more harm is done to health.

Taking treatment breaks is definitely not recommended now, but it was a choice some people made, for example because of side effects (which were far worse in the early days of HIV treatments).

Don’t Stop the Treatment
“The results strongly support the concept that patients should be discouraged to discontinue antiretroviral therapy,” comment the investigators. If they wrote this in plain English they would simply say 'Don't stop HIV treatments; keep taking the tablets.'

People taking antiretroviral drugs may stop taking HIV treatments. We already knew from the SMART study some years ago that you could still see harmful effects of stopping treatment around two years later. This latest Swiss study looked at what happens after this. Is the harm permanent when people stop taking HIV treatments?

They looked at almost 2500 people who started HIV treatment between 1996 and 2008. They split the people into three groups depending on their use of treatment, so any differences because of treatment would be clear to see.

More than half the people (51%) stopped their HIV treatment at least once. Around one fifth (19%) didn’t stop taking their HIV treatment but sometimes had a viral load above 1000. The third group were people who kept taking HIV treatments and always had a viral load below 1000. Normally, with HIV treatment, viral load should become undetectable, almost 0.

CD4 Counts Up, or Down?
Average CD4 count rose (which is good) from 210 to 491 cells after eight years. However, the size of any rise varies with the group. Almost two thirds of the people who stopped taking HIV treatments did not see their CD4 count rise above 350. People who carried on taking treatments were rather more likely to see CD4 counts rise above 350 (87% had a CD4 of 350 or more among those taking treatments all the time, compared with 63%, among the people who stopped taking HIV treatments).

Those who stopped HIV treatment were significantly less likely to see their CD4 count rise higher still, to above 500.

Longer treatment breaks are worst
The longer you stopped treatment, the less your CD4 count rose. Average CD4 counts actually fell among people who stopped treatment for two and a half years.

Smaller rises in CD4 counts are also seen among older people, people who also have hepatitis C, and people starting HIV treatments late.

More HIV-illnesses and AIDS conditions
Taking treatment breaks means people are more likely to have HIV-related illnesses such as oral hairy leukoplakia, oral thrush, and herpes. People are more likely to develop an AIDS-defining illness.

The longer you stopped taking treatment, the more likely you are to get an AIDS-defining illness. Even stopping treatment for just one month raises this chance, and it doubles when the break in treatment lasts 6 months, and is roughly half as large again if the break is over two years. “If any interruption is required, it should be as short as possible to avoid poor clinical outcomes,” comment the investigators.

Deaths too
Death rates are higher among people stopping HIV treatment (20 per 1000 person years) and lower among people who keep taking the tablets. 4 deaths per 1000 person years occur among those stopping HIV treatment and the death rate is just half this among people who keep taking treatments with an undetectable viral load.

The earlier SMART study (which looked back at people two years after they had stopped HIV treatment) found more deaths from cardiovascular disease, but this longer-term Swiss study didn’t find this. “The absolute risk of cardiovascular events remained low,” the researchers say.

The investigators believe their study “adds important new information on the long-term clinical consequences of treatment interruptions and the effect of duration of treatment interruptions.”

They write that their findings show “an interruption of ART for 6 months or more resulted in sub-optimal recovery of CD4 T lymphocytes and increased risk of opportunistic complications or death.”

Best – Treat Early, Don’t Stop, Get Undetectable Quick
To achieve the best outcomes in patients the authors suggest “it appears to be essential to initiate ART early, avoid treatment interruptions and suppress plasma HIV-1 RNA to values as low as possible."

People having problems with taking treatment should seek help from the HIV clinic or HIV community organisation. In NW England people are welcome to contact our services team.

Source with reference

Over 50s HIV Infections Double

posted: 18/08/2010

New HIV infections among people over 50 have doubled in England, Wales and Northern Ireland in the last seven years, and almost half the over 50s were diagnosed late, according to a new study in the latest issue of AIDS.
 

More and more HIV experts are now thinking hard about older people with HIV. Not only are the numbers of older people with HIV rising steeply, older people are also getting HIV, health prospects are worse when you are over 50, and it is clear that there are some different problems in living with HIV when older.
 

This latest study looked at older people with HIV in England, Wales and Northern Ireland between 2000 and 2007. The starting point for ‘older’ is age 50 or over.
 

While the numbers of over 50s with HIV tripled between 2000 and 2007, there was also a sharp rise in the number of older adults getting HIV. Is the tripling of the number of people with HIV over 50 because people are living longer because of HIV treatments, or is it because more people are getting HIV after 50?

To find out the Health Protection Agency decided to analyse the national HIV data for the time between 2000 and 2007.
 

Nearly 1 in 10 new infections among people over 50
They found 8% of all new HIV diagnosis were among people over 50. But the new infection rate among over 50s is still rising and in 2007 it reached 9%. The number of older people who were newly diagnosed more than doubled, from 299 in 2000, to 710 in 2010. Almost three-quarters of these new diagnoses were people aged between 50 and 59.
 

Gay and other men who have sex with men were 40% of all the people diagnosed over 50. A third of the newly diagnosed were heterosexual men, and 25% heterosexual women.
Almost all (94%) the gay men are of white backgrounds. Older heterosexual men and women were rather more likely to be white than heterosexual men and women under 50.
 

8000 and rising
A total of 8255 older adults used HIV clinics between 2000 and 2007. This is 16% of all the people using HIV clinics.
 

Late diagnosis and AIDS
20% of the older adults developed an AIDS defining condition in the years 2000 - 2007. Mostly (91%) an AIDS condition was diagnosed within three months of diagnosis with HIV – this means HIV was diagnosed at a really late stage. This is twice the rate of AIDS diagnoses found among the under 50s.
The Health Protection Agency definition of late HIV diagnosis is when the CD4 count is below 200 at diagnosis. People diagnosed over 50 are significantly more likely to have a CD4 count this low than the under 50s (48% for over 50s, 33% for under 50s).

HIV treatment is now started normally when the CD4 count is around 350, so really many more people were diagnosed late than these HPA figures suggest. By the time the CD4 has fallen to 200 avoidable health harm has already been done.

More deaths, sooner
538 (13%) of the people over 50 died between 2000 and 2007. People diagnosed with a CD4 below 200 were 14 times more likely to die than younger patients with this CD4 count (14% for the over 50s, 1% for the under 50s).
 

Moreover, over 50s who are diagnosed late were approximately two and a half times more likely to die within a year of their diagnosis than under 50s with a CD4 count below 200.
 

The overall mortality rate amongst older patients was 25 per 1000 person-years. In contrast, the mortality rate for younger patients was half that - 12 per 1000 person-years.
 

Half got HIV after 50th birthday
Based on CD4 cell count at the time of diagnosis, they worked out that 48% of the older people with HIV got HIV when they were aged 50 and over. This percentage hasn’t changed between 2000 and 2007.
 

Three-quarters of individuals aged over 50 when they became HIV positive are men, and 54% were gay men.

Source

Reference Smith RD et al. HIV transmission and high rates of late diagnoses among adults aged 50 years and over. AIDS 24: 2109-2115, 2010.
 

Lancashire HIV Activist Dies

posted: 25/05/2010

Lancashire man, Marc Rushton, who campaigned to raise awareness of HIV, and who co-founded the East Lancashire HIV charity THRIVINE, has just died. His funeral will be on Thursday 27 May at St Mary’s Church, Oswaldtwistle, at 10am. 
 

Marc Rushton, 42, was diagnosed with HIV under two years ago. He died peacefully in hospital last Tuesday following a brain haemorrhage. Marc, a businessman, told his story to the Lancashire Telegraph for an article challenging HIV stigma, which appeared last World Aids Day.
 

Ill and fighting stigma
He was already very ill, but was determined to help remove HIV stigma and secure more funding to help people affected. Speaking to the paper last October, he said: “I've had an amazing life so I don't feel sorry for myself. I feel like I've been given this for a reason and I have to talk about it. HIV is massively on the increase in East Lancashire. And it's not just gay people, it's not just drug users, it is heterosexual people.
 

"The UK has the highest rates in Europe. I think half of the stigma around HIV is attached to a lack of understanding. If you don't catch it early enough and if you don't get medicine then it's more likely to become full-blown AIDS. That is why we're stressing to everybody to get tested.”
 

Thrivine founder and treasurer
Marc, of Accrington, was a co-founder, trustee and treasurer of Thrivine, a HIV support group based at Eanam Wharf, Blackburn, which helps people living with HIV in East Lancashire.
 

Adrienne's comments

Adrienne Seed, the chair of Thrivine and a close friend of Marc, praised his bravery and said it was fitting he passed away on the date of their first AGM. She said: “I am sure that Marc chose his moment, that he was with us at that point saying goodbye to us all; to his positive comrades in arms. I know how much Thrivine meant to him and how important it would be to him that we carry on. We always laughed together even when he was going through what to other people would be considered as insurmountable health problems.
 

“Marc had an unfailing optimism that denied how ill he really was. I knew how ill he was but somehow I thought he’d survive. I think he knew in his heart he didn’t have much time. His time may have run out but his legacy will never be forgotten. I will make sure of that.”
 

Donations and funeral

Marc’s funeral will be held at St Mary’s Church in Oswaldtwistle, at 10am on Thursday, May 27.
 

Donations in memory of Marc can be made to Thrivine c/o Hyndburn Funeral Services, Queen's Road, Accrington.
 

Thrivine

Source

Gay Men and HIV Losses

posted: 12/05/2010

If you are 50 or older, a gay man and willing to talk about how HIV affected you in the early days of the epidemic, a researcher is keen to talk with you and is looking for another 30 older gay men to talk with.

Dana Rosefeld is a senior lecturer in Sociology at Keele Univerity, who is doing PhD research into the early UK epidemic.

Her study is called: ‘The Lost Generation’: The Social Worlds of Older Gay Male Survivors of the AIDS Epidemic.’

She wants to find out how older gay men experienced the AIDS epidemic, how it affected them and their friends, and how they handled the illness and deaths of friends and partners. She wants to know how the early epidemic of the 1980s and 1990s affected the men's social networks, and how the men rebuilt those social networks. And how did the HIV epidemic affected the men’s personal lives?

It will take about 1-2 hours - at a time and place of your chosing - and you will be paid £10 for your time. She may do some interviews at George House Trust.

Please contact Dana by email if you are interested.

Please avoid leaving a phone message - she may be away and not able to respond - 01782 733932.

Full details - most of your questions will be answered here

Making panels for the UK AIDS Memorial Quilt was one way for people to express their experiences of HIV in the early years.