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

Beating HIV Hate Neighbours

posted: 07/12/2010

Tom faced a four year campaign of HIV hate from his neighbours before he finally moved away. Tom (not his real name) is gay and HIV positive and his sexuality and having HIV made him a target for one of his neighbours in a block of flats in Manchester.

• They made inappropriate and abusive comments to him and his partner
• Then they accused him of playing loud music in the early hours
• They accused him of threatening them, so he was arrested.
• They also told other people in the block about his HIV
• Tom was assaulted twice
• His landlord, a housing association, went to court and got an injuction against him
• His landlord tried to evict him.

"This neighbour kept diaries about me, recording who was visiting my flat, and she claimed I was bullying her. The housing association that owned the flat issued an injunction against me. She got me arrested for allegedly threatening to kill her."
Earlier this year Tom’s housing association tried to end his tenancy, by sending him a court summons to repossess his flat .
 

Breakthrough Help

That was when he asked Breakthrough UK to help. Breakthrough are a Manchester-based national charity which supports disabled people who are victims of hate crime. Tom said "They advised me to give up the flat and get out. They gave me support, and now I'm in private accommodation. This neighbour made my life hell. She was making stuff up about me. I couldn't stand to be in the flat. I started drinking and would stay out as late as possible.
 

Police Say - Not a Hate Crime
"I told the police but they didn't see it as a hate crime – just anti-social behaviour.

I am a lot happier now. I have no stress and I'm free from all the hatred and homophobia. Without the support of Breakthrough I would probably have finished up in prison. The neighbour had claimed I had breached the injunction, but that was untrue, she just wanted to get me locked up."
 

Stamping out HIV hate
Lorraine Gradwell, Chief Executive of Breakthrough UK, said: "Our service sends out a clear message that any kind of hate crime against disabled people must be stamped out." Hate crime can be a physical attack or verbal attack towards a person because of their disability. Last year Greater Manchester Police recorded 74 incidents of hate crime against disabled people, but not this one.
 

The police are now working closely with disabled people and disability organisations including Breakthrough UK, to raise awareness of the crime and encourage victims to come forward.
 

Sergeant Kate Crompton, Greater Manchester Police, said: "Some disabled people are subject to appalling crimes because of their disability. Many are unaware that incidents such as name calling, harassment and intimidation can be criminal offences and should be reported to the police straight away. We are working hard to catch offenders and support victims and would ask anyone who has been subject to this crime to come forward. This type of behaviour is entirely unacceptable and will not be tolerated and those responsible will be brought to justice."
 

HIV Hate Too?

If you have been a victim of HIV or disability hate crime, you can contact

• George House Trust services team by email or by phone 0161 274 4499
• Breakthrough UK
• The Working It Through Together Project at Breakthrough UK runs a Disability Hate Crime Helpline for Greater Manchester     0161 882 2213        on Wednesdays between 2pm - 6pm, and you can leave a message on the ansaphone outside this time.
• your local neighbourhood policing team at www.gmp.police.uk or by calling 0161 872 5050
   

Working It Through Together  staff are also available on the main Breakthrough UK phone number       0161 273 5412       on Monday - Friday between 9 and 5, or by e-mail.
 

Source

Weekends Away with Baseline

posted: 17/05/2010

Eat, sleep, walk, relax is the invitation Baseline offer for three holiday weekends for people living with HIV. Pick a weekend on the Gower peninsular in South Wales, in the Lake District, or in Snowdonia in North Wales.

Want to meet other people with HIV or do something relaxing and healthy for a change? How does 2 days in some of Britain’s beauty spots sound?

What's offered - and what's not

Daytime guided walks and nature talks. Night time eats and drinks.
The weekends are subsidised and each weekend costs £75. For this you will get two nights accommodation in an exclusively booked venue, breakfast on both Saturday and Sunday, three course evening meal on Saturday night. Plus tea, coffee and squash. Two days of guided walks, all group safety kit.

Not included: Personal drinks, you also need to take two dishes of food for the buffet for Friday night, arrange yourself a packed lunch for Saturday, take walking clothes / trainers / boots, and make your own way to the weekend's location. However, if transport is difficult please contact them as they may be able to arrange car shares from Manchester / NW England for you.
 

Booking - be quick
More details and online booking or by phone from Gareth 07779 040 396, or Robert on 07886 159 735
 

There are a limited number of places, and the bookings are all first come, first served, so book early.

Where and When?
Gower peninsular, near Swansea, South Wales September 10-12th 2010
When we posted this news item there were 7 places left for this weekend.

Gower holiday information      

More details Baseline Weekends and what you can expect to happen each day.

Breakthroughs in Life

posted: 08/12/2009

If you feel trapped in a HIV rut, maybe this example of small steps leading to big, welcome changes will inspire you. ‘Rob’ (not his real name) was seeing a George House Trust adviser about employment and other problems at George House Trust, and we suggested he go to the Independent Employment Advocacy Centre. With his employment problems their ‘supported advocacy’ would be especially helpful to him.

‘Rob’ worked at a hostel for people and had asked for an Occupational Health assessment for work because his HIV treatment was changing and this affected his work. One of the advocates from Independent Employment Advocacy Centre went with him and supported him at the Occupational Health Assessment by a doctor, and then helped him successfully apply for Disability Living Allowance and Working Tax Credits.

Working breakthroughs
Nine months on, he was able to look and plan his career. He’s asked Breakthrough’s Employment Team to support him in the career move he really wants. He has become more active in his trade union and put himself forward to be a learning rep this year, and has now been in this role for several months.

He also had an appointments with Breakthrough’s new Law Works clinic, about a housing problem. He says that “Breakthrough is supporting [him] to stay in work, and has made all the difference for [him]”.

BreakThrough UK provide a range of services including legal advice at their new law clinic. Anyone who has HIV counts as disabled and can therefore use Breakthrough. Their law clinic helps with advice about Housing, Employment, Benefits, Consumer Affairs, Debt, problems. They can’t help with criminal, family or immigration/asylum problems.

The law clinic is at Breakthrough and runs from 6pm to 8pm fortnightly on Wednesdays and available by appointment only. To book ring the Independent Employment Advocacy Centre : 0161 273 5412

Employment Advice on the road
Their Independent Employment Advocacy Centre (IEAC) is holding a series of Outreaches, where you can come for information and confidential one to one support on employment issues. Dates are as follows:
Old Trafford Library, Old Trafford (Every 1st Tuesday, 11am – 1pm)
5th January 2010

Shaw Trust, Oldham (Every 2nd Friday, 10am – 1pm)
11th December 2009
8th January 2010

“Café Eden” Victoria Mill, Bolton (Every 3rd Wednesday, 12pm – 2pm)
16th December 2009
20th January 2010

Stockport Wellbeing Centre (Every 3rd Thursday, 12:30pm – 2:30pm)
17th December 2009
21st January 2010

Breakthrough Breakthrough UK Ltd.
Business Employment Venture Centre,
Aked Close, Ardwick,
Manchester M12 4AN
0161 273 5412
Text phone: 0161 273 5727
email
 

Liverpool Office 0151 236 1030