Tag Archives: HIV & AIDS

How older people with HIV are facing the future

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In common with many people diagnosed with HIV in the 1980s, Danny West thought he had just months to live.  He became ill, watched friends die and prepared for his own demise at the hands of what was then an unknown virus.

Nearly 30 years on, Danny, who is from London, is one of the longest-surviving people in the world with HIV.  He is part of a growing group of around 19,000 adults aged over 50 receiving care for human immunodeficiency virus in the UK, many of them kept alive thanks to improvements in drug treatments.

Recently, the UN called for the “ageing” of the HIV epidemic to be taken seriously. It wants more services to be made available to this age group, who are now facing old age.  For many, life with HIV has been an emotional and physical rollercoaster.

Danny says he never thought he’d see 50.

“I was given a year at most. I was 24, I’d just got my social work qualification and my foot on the career ladder, and it was all whipped away in one moment.

“There was no treatment then. Over the next two years after my diagnosis, all of my peers died. Everyone went down like cards. My community was gone.”

Danny has never been able to get a mortgage and does not have a pension. Despite working in the public sector and for HIV charities for many years, he has no idea what the future holds.

Many older people with HIV have serious money worries “I haven’t prepared myself psychologically for growing older. My body is ageing faster than a normal person’s. I’ve got arthritis and osteoporosis and I live in constant physical pain.  But the real issue for me is poverty – I don’t know how I will cope financially.”

A recent study of people over 50 living with HIV by the Terence Higgins Trust, found that Danny’s concerns were not unusual.

The 50 Plus report showed that older people with HIV are financially disadvantaged compared with their peers and have serious worries about money, poor health, housing and social care.

Lisa Power, policy director at THT, says this is because many people became ill and had to give up work after their diagnosis. Others sold up, cashed in their pensions, went round the world and waited to die.

HIV Over 50

As “brilliant” anti-retroviral drugs started prolonging lives, she says, “benefits were cut for people who hadn’t made provision for their old age, leaving many of the older HIV group living on a basic state pension“.

“We found huge poverty in our study, particularly among those who thought they had a death sentence. Now we’re coming round to understanding that people with HIV have a normal life expectancy.”

For those diagnosed in recent years, the treatment is straight forward and they can carry on working and raise a family. But for those diagnosed back in the 1980s, the HIV journey has been considerably more traumatic.

Doctors still do not yet fully understand the impact of HIV on the ageing process.  Some health problems in older HIV patients may be related to the early treatments they received, which had significant and sometimes toxic side effects, rather than the virus itself.

But there is generally thought to be an increased risk of cardiovascular disease, heart disease, strokes and cancers in people with HIV.

Dr David Asboe, a consultant in HIV medicine and sexual health at Chelsea and Westminster Hospital and chairman of the British HIV Association, says more than half of the HIV patients he sees are over the age of 50, and some are even in their 80s.

“The earlier they are diagnosed, the earlier we can get them into treatment and that’s important. If there is a delay then that’s when the mortality risk increases.”

The psychological effects of HIV on this group are all too obvious, he says.  “They should be able to work, but there is a real loss of confidence, and it can change the way people consider relationships with their family and wider society.”

Danny has recently been forced to moved into damp, cold social housing in an area where he knows no-one, where he is facing the future with HIV alone.  “I don’t have a picture of what I will be doing in the next 10 years. There are lots of uncertainties and unknowns.

“I live in fear of ill health, poverty and isolation. That’s what I lie in bed thinking and worrying about.”

HIV charities say that healthcare professionals, such as GPs, need to understand more about HIV and home carers should be given more training. Too often, patients don’t have the confidence to disclose their status to their doctor or talk about their problems.  Danny says that previously any health problems he had would have been dealt with by a specialist consultant but changes mean that he now has to see his GP first for everything, which is unhelpful and frustrating.

According to Lisa Power, Policy Director for the Terrence Higgins Trust, there are still too many myths surrounding HIV and more public awareness is needed.

“One group thinks there is a cure for it, another thinks it’s a death sentence. The reality is that people with HIV have a managed, chronic condition – but they also have a life.”

Story courtesy of the BBC News Health

You can download a copy of the national study of ageing from the Terrence Higgins Trust here.

You may also be interested in: Many Older People with HIV Face ‘Age-Related Stigma’ (lass.org.uk)

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A special message from our international patron, Desmond Tutu on World AIDS Day

Archbishop Desmond Tutu, LASS’s International Patron has sent a special video message from Cape Town to mark 1st December, World AIDS Day, for LASS.

“God, you love us all especially those of your children who suffer. We think at this time on Worlds AIDS Day of those who have HIV/AIDS. Help them not to despair, help those who work to combat this pandemic. Thank you that it is reducing. May those who are ill take their treatment regularly”

-Arch Bishop Desmond Tutu (November 2013)

LASS is a service user and volunteer charitable agency which works to prevent the spread of HIV and to promote positive sexual health through education, training, and community initiatives. By working together with other agencies, we play a major part in developing a coordinated response to the challenges of HIV/AIDS. We provide support for HIV positive people and HIV education and awareness across the communities.

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Missed, HIV Testing Week? – Don’t worry we do it all year round :-)

We are pleased publish our advert to promote HIV testing, this advert speaks with 15 languages internationally.

Our message is clear, it is better to know your own HIV status and you can get a HIV test at LASS, and have the result within a minute!

Our team of volunteers have specialist training to provide a free and confidential test, we also have a fantastic support team to provide after-care and further information if required.  We also have established network links so we can refer to more specialist agencies so you can be sure to get expert advice for your needs.

We hope you like our advert and hope that you’ll feel comfortable to contact us if you would like a free and confidential test. (0116 2559995)

Going to Hospital? – How about a HIV Test?

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A London NHS trust is offering all hospital outpatients an HIV test, regardless of why they are there, to tackle the fact that a fifth of people in the UK with HIV are unaware of their infection.

Click to view Channel 4 News video (3:21 min, opens in a new window)

Patients coming in to six hospitals across in east London this week for anything from follow-up appointments to routine blood tests will all be offered an HIV test.

The initiative is part of a national drive to get more people in the UK tested. Around 100,000 people in the UK have HIV, (About 1,300 are within Leicestershire) but experts estimate that around one fifth are unaware of their diagnosis because they have not had a test. This means not only that their condition can become more advanced and harder to treat, but also that they could unintentionally infect others.

Thousands of patients pass through NHS hospitals every day – but at the moment, HIV testing is limited to only a few specific areas.

Dr Chloe Orkin, HIV testing lead for Barts Health NHS Trust, said:

“We are used to seeing health messages all the time in hospitals about stopping smoking, or having a flu jab. Messages encouraging HIV testing should take an important place amongst them.

We are used to seeing messages about stopping smoking. Messages encouraging HIV testing should take a place amongst them.”

Dr Chloe Orkin, Barts Health NHS Trust

The trust aims to test 2,500 outpatients across six London hospitals this week, including the Royal London, in what is thought to be the biggest testing campaign of its kind ever in the UK. It wants to remove the stigma of an HIV test.

HIV infection remains one of the UK’s most important communicable diseases, according to Public Health England. And the problem is worse in some areas, including east London – where people are three times more likely to have HIV than elsewhere in the UK.

But a positive diagnosis is a long way from the “death sentence” that it used to be seen as in the 1980s. Medical advances mean that people diagnosed promptly can expect a near normal life expectancy.

‘I felt let down’

Alan, a 70-year-old Londoner, spent 12 months of illness recently without a diagnosis because none of the doctors who saw him thought of offering him a HIV test.

“Nobody thought to test me for HIV. When I was finally asked if I was willing to be tested I immediately said: ‘Yes, by all means, let’s get that out of the way,'” he said.

“Having been found to be positive at almost seventy years old was a massive shock but once it had sunk in I did feel somewhat let down that nobody had suggested it before, despite the otherwise wonderful care I had received.

“We need to take away the stigma of being tested for HIV so that it becomes a routine test for people visiting hospital irrespective of their gender, ethnicity or age.”

An earlier, smaller pilot at the hospital earlier this year found eight people who were not aware they were HIV positive and who are now receiving treatment. Doctors hope to help more people with the new testing push. Results will be made available within a week and anyone who tests positive will be offered continuing treatment.

Clinicians and HIV charities are united in the belief that testing in this manner is the way forward, but there are issues with cost. Student doctors are providing the tests at the hospital this week.

But Barts NHS Trust says testing like this would ultimately save money. It costs around £5 to do an HIV test and around £5,000 a year to keep an HIV positive person healthy, but it can cost £500,000 to treat someone who is diagnosed late and who needs costly treatments in hospital.

“We want to make it normal for staff to offer HIV tests, and normal for patients to accept them,” said Dr Orkin.

“If a doctor missed a diabetes or cancer diagnosis people would be very upset. Diagnosing HIV patients late by not testing them is just as serious and we need to change this.”

If you would like a free, confidential HIV test, you can visit LASS for a free confidential

Did you know it’s National HIV Testing week this week? – If you’ve never had a HIV Test and had sex at least once, without a condom, then it might be a good idea to get one.

Our tests are free and confidential and iIt only takes a few minutes to get the result. Call us on 0116 2559995 if you’re interested.

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Audit shows many high HIV prevalence areas in England are failing to expand HIV testing

HIV TESTING

Most sexual health commissioners for areas in England with a high HIV prevalence have introduced some form of expanded HIV testing, a study published in the online edition of HIV Medicine shows. However, only a small minority were following national guidance, with just a third having commissioned testing for new registrants in general practice and 14% commissioning testing for people admitted to hospital.

“The results of this audit confirm that routine HIV testing in these settings has been commissioned in only a minority of high-prevalence areas”, comment the authors. “Prioritizing the introduction of routine testing in these settings will be necessary to fully implement national testing guidelines.”

Late diagnosis of HIV is a major concern in the UK. Approximately half of people newly diagnosed with HIV have a CD4 cell count below the threshold for the initiation of antiretroviral therapy (350 cells/mm3) recommended by the British HIV Association (BHIVA) and between a fifth and a quarter of all HIV infections are undiagnosed. Improving HIV diagnosis rates is key to strategies to reduce rates of HIV-related illness and also the continued spread of the virus.

National HIV testing guidelines were issued in 2008 and were endorsed in 2011 by the National Institute for Health and Care Excellence (NICE). These recommend that HIV testing should be expanded beyond traditional settings (sexual health clinics and antenatal services) in areas with a high HIV prevalence – an infection rate of above 2 per 1000. In these circumstances, the guidelines recommend the universal testing of all patients newly registering with a GP, the screening of all new medical admissions to hospital and targeted outreach programmes.

Investigators wanted to assess the level of adherence to these guidelines and to see if there were any obstacles to the expansion of testing.

Between May and June 2012, the investigators contacted sexual health commissioners in the 40 English primary care trusts (PCTs) with a HIV prevalence above 2 per 1000. There was an 88% response rate (35 of 40).

All the respondents were aware of the testing guidelines and the majority (80%; 23 of 35) has introduced some form of expanded testing.

In most cases, this was testing in the community (51%; 18 of 35), followed by testing in general practice (49%; 17 of 35) and testing in hospitals (37%; 13 of 35). However, only four PCTs (11%) had commissioned expanded testing services in all three settings.

Areas with especially high prevalence were more likely to have commissioned services. All but one of the PCTs with a prevalence above 5 per 1000 (92%, 11 of 12) had commissioned some form of expanded testing. More worryingly, a third of PCTs with background prevalence between 2-3 per 1000 had commissioned any form of expanded testing and only 33% had introduced testing at GPs, with just one commissioning testing in hospitals.

When the investigators examined adherence to the specific recommendations of the guidelines, they found that only 31% of PCTs (11 of 35) had commissioned routine testing of new registrants at GPs. Moreover, only a small minority (10 to 20%) of GP practices in these areas participated in expanded testing. In a fifth of PCTs, testing was limited to high-risk groups. PCTs in London, compared to PCTs elsewhere in England, were somewhat more likely to have commissioned the routine testing of new GP registrants (38 vs 18%). HIV testing was incorporated into general sexual health screening at GPs in 17% of PCTs (6 of 35).

An even lower proportion of PCTs had commissioned the routine testing of new admissions to hospital (14%; 5 of 35).

Over half of PCTs (51%) had commissioned community testing via outreach programmes carried out by charities and the voluntary sector. This testing targeted high-risk or marginalised populations including men who have sex with men (six PCTs), African people (four), sex workers (two), people who inject drugs (one) and the homeless (one). Settings for community testing included saunas, polyclinics, pharmacies, prisons, churches and health centres.

Almost all PCTs (94%; 33 of 35) cited lack of resources as a barrier to introducing expanded testing, with two-thirds (23 of 35) also stating that the re-organisation of the NHS was an obstacle. Approximately 75% of commissioners (26 of 35) expected the rate of HIV testing carried out in their area to increase over the next year. None expected a decrease.

“Modelling of the UK HIV epidemic has shown that higher rates of testing combined with timely initiation of antiretroviral therapy can result in reduced HIV incidence”, write the authors. They note that most respondents had introduced some form of expanded testing, “however, only a minority covered the two medical settings mentioned in national testing guidelines…new registrants in general practice…and general medical admissions.” The authors conclude that recent organisational changes in the NHS make it important to monitor “changes in the commissioning of testing over time”.

HIV TESTING WEEK

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Did you know it’s National HIV Testing week from 25th? – If you’ve never had a HIV Test and had sex at least once, without a condom, then YOU need a test!

Check out the details of HIV Testing week and remember, you can pop in to LASS for a free and confidential rapid HIV test.  It only takes a few minutes to get the result.  Call us on 0116 2559995 if you’re interested.

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Discovery of HIV ‘invisibility cloak’ reveals new treatment opportunities

HIVGLASS

“Glass Microbiology” by Luke Jerram. (See: https://blog.lass.org.uk/2013/01/23/2393/) for artwork details. (Image unrelated to story).

Scientists have discovered a molecular invisibility cloak that enables HIV, the virus that causes AIDS, to hide inside cells of the body without triggering the body’s natural defence systems.

Their study shows how ‘uncloaking’ the virus using an experimental drug triggers an immune response that stops the virus from replicating in cells grown in the laboratory. The findings could lead to new treatments and help to improve existing therapies for HIV infection.

The innate immune system is the body’s first line of defence against infection and incorporates an alarm system present in all cells of the body that detects the presence of ‘foreign’ material from invading bacteria and viruses. When the alarm is tripped, the infected cell begins an antiviral programme and sends out warning signals to alert other cells that a virus is around.

HIV infects vital cells of the immune system, so its ability to replicate undetected without triggering this alarm system has puzzled scientists since the discovery of the virus.

The team identified two molecules inside host cells that are recruited by HIV after infection that stop the virus from reproducing its genetic material too early. The effect is to shield the virus from the alarm system and stop the innate immune system from kicking into action.

In the absence of these molecules, whether caused by depletion from infected cells or by blocking their recruitment using an experimental drug, HIV is exposed to the alarm system and an antivirus immune response is triggered. Targeting the cloaking molecules and not the virus itself makes it much more difficult for the virus to mutate and become resistant to this treatment approach, a significant problem with standard HIV therapies.

Professor Greg Towers, a Wellcome Trust Senior Research Fellow at UCL and lead author of the study, said: “HIV is extremely adept at hiding from our body’s natural defences, which is part of the reason the virus is so dangerous. Now we’ve identified the virus’ invisibility cloak, and how to expose it, we’ve uncovered a weakness that could be exploited for new HIV treatments.

“There’s a great deal more research needed, but the potential for this approach is huge – as a possible treatment in itself, but also as a complement to existing therapies. We’re also interested to see whether blocking these cloaking molecules can help to boost immune responses to experimental vaccines against HIV or be used to protect against HIV transmission.

“The hope is that one day we may be able develop a treatment that helps the body to clear the virus before the infection is able to take hold.”

The experimental drug used in the study is based on cyclosporine, a drug that is widely used to prevent organ rejection in transplant patients because of its ability to dampen the immune response. Cyclosporines have been shown to block the replication of HIV and other viruses but are not suitable for treating infected patients because of their negative effects on the immune system.

The team used a modified version of the drug, which blocks the effects of the two cloaking molecules without suppressing immune activity.

Dr Kevin Moses, Director of Science Funding at the Wellcome Trust, said: “In 2012, 2.3 million people were newly infected with HIV. While existing treatments are helping people with HIV to live longer and healthier lives, the challenge of adherence to treatment programmes means that drug resistance remains a threat and the virus continues to burden the world’s poorest communities. Understanding how HIV interacts with the body’s own defences might just be crucial for developing the best approaches to therapy.”

The study is published today in the journal ‘Nature’ and was funded by the Wellcome Trust, the Medical Research Council and the National Institute for Health Research University College London Hospitals Biomedical Research Centre.

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HIV Testing Training (This week)

Celia---HIV-Basics

Celia Fisher, delivering HIV Training at The Michael Wood Centre

At the moment around 100,000 people in Britain are living with HIV, and it is estimated that as many as one in four of them don’t know they are infected. It’s hoped that making HIV tests much more accessible will encourage many people to take control over their own health.

HIV Testing has been available for just under 30 years, presently it’s available from GU clinics and registered testing centres such as LASS and from April next year, home testing for HIV will become legal in the UK.

To slow down the spread of HIV and help people to access treatment, LASS invests in rapid testing services in community settings. There is particularly low uptake in some African communities, so LASS trains volunteers from these communities to carry out testing and to provide information.

We provide testing at a range of events and venues including African football tournaments to reach people who otherwise wouldn’t be tested. We also provide services for people with HIV who maybe coping with other issues like poor mental health.  We also provide healthy living training.

If you would like to join the team and become a community HIV tester with LASS, we are running training sessions this Thursday and Friday (26th & 27th September) – from 9.30 to 4.30 on both days at The Michael Wood Centre.

This course is available to LASS volunteers only.

The course covers theory and practice about HIV transmission, Basic HIV knowledge, treatment and benefits of testing, Pre-test “discussion” and information, Sharing test results, Inclusive practices and consideration of different communities and cultures, Role play scenarios, Procedures to use testing kits and Working with different clients.   Following the training, you will need to complete a written test.

To enrol on the course, please contact us on 0116 2559995 or email Celia or Eric for more information.