February 22, 2012

21,000 people unaware they are living with HIV in UK

Figures published today (Tuesday 29th November) by the Health Protection Agency (HPA) show the number of people living with HIV in the UK reached an estimated 91,500 in 2010, with a quarter of those unaware of their infection.

Their report also indicates that one in five people visiting an STI clinic did not accept an HIV test. The HPA is concerned that over half of people diagnosed in 2010 came forward for testing after the point at which treatment for their infection should ideally have begun. Late diagnosis is associated with an increased risk of AIDS and death. Among the 680 people with HIV who died in 2010, two thirds were people who had been diagnosed late. The HPA report recommends that in areas where prevalence of HIV is high, there should be universal testing for the infection in all new GP registrants and patients admitted to hospital so as to reduce late diagnosis. 

The HPA’s annual ‘HIV in the UK’ report found 6,660 people were newly diagnosed with HIV in the UK. The report confirmed that infections probably acquired within the UK almost doubled in the last decade from 1,950 in 2001 to 3,640 in 2010 and exceed those acquired abroad – 3,020. This rise is mostly due to infections acquired among men who have sex with men, who remain the group most at risk of HIV infection in the UK.

In 2010, over 3,000 gay men were diagnosed with HIV – the highest ever annual number. One in 20 gay men are now infected with HIV nationally with one in 11 in London.

Dr Valerie Delpech, consultant epidemiologist and head of HIV surveillance at the HPA, said: “HIV is an infection which can nowadays be treated and those diagnosed promptly can expect to experience similar life expectancy as an individual without the infection. However, we are very concerned that a large number of people in the UK are unaware of their HIV status and are diagnosed late.

“We want to see increased access to HIV testing routinely offered in clinical settings such as new registrants at GPs and hospital general admissions, in areas of the country where rates of HIV infection are high. We are also urging sexual health clinics to ensure that HIV testing is offered as part of a universal sexual health screen at every new attendance.

“Research by the HPA has shown that routine and universal testing is feasible to undertake and acceptable to patients. Increased testing and greater access will help reduce the number of people who are unaware of their HIV status and increase the chances of early diagnosis, when treatment is more successful.”

Dr Delpech added: “Thanks to the development of anti-retroviral treatments and universal access to world class health care through the NHS, HIV is a manageable illness for the vast majority of people affected in this country. But an HIV diagnosis means a lifetime of medication and the costs of providing specialist HIV treatment and care are substantial and accelerating, so avoiding the infection altogether is essential for controlling the epidemic in the UK.

“If you are having sex, using condoms with any new or concurrent partners is the best way to prevent HIV. We encourage all people to take up the offer of an HIV test in whatever health care setting.”

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Preliminary Research Results

The UK Foundation for AIDS Research conducted an anonymous survey of HIV positive people in the UK during 2010/11. The survey was publicised online and via community groups. The majority of responses were gathered via the website (20 responses were completed offline). Whilst respondents were self-selecting and the results not scientifically analysed or weighted, the purpose was to identify issues, especially around quality of life, which warrant further investigation. 589 people took part in the survey, with 402 (68%) completing all 50 questions.

Demographics
As might be expected most respondents lived in Greater London, however all parts of the UK were represented (fig 1). 83% were male, 16% female and 1% transgendered. In terms of age the distribution was as expected and included people from the 15-19 to the 75-79 age groups (fig 2). 77% identified as gay, 18% as straight, 4% bisexual and 1% no sexuality. No one identified as lesbian. Over 80% of the women were heterosexual with 91% of the men being gay. 63% of the women were white, compared with 92% of the men. Overall 76% of people were born in the UK, with 87% being British citizens; 1% were refugees / asylum seekers.

Most respondents were well educated with 70% having been to university, however only 48% were currently in full time employment, with 18% unable to work due to illness. 41% lived alone and 30% lived with their partner or spouse. Income (fig 3) suggests that respondents income is below what might be expected from a comparable group without HIV.

Living with HIV
Most people acquired HIV in the UK (74%), with 5% in Africa. Respondents thought they had acquired HIV via:

  • Sex with a man 87.2%
  • Sex with a women 3.6%
  • Injecting drug use 0.6%
  • Contaminated blood 1.9%

Respondents were asked how long they thought they had been living with HIV:

  • More than 20 years 13.0%
  • 15 to 20 years 13.0%
  • 10 to 15 years 13.2%
  • 5 to 10 years 28.7%
  • Less than 5 years 32.1%
Year of diagnoses
20% of respondents were diagnosed before 1995 with steady increases each year to 2009 (fig 4). Looking at all the responses 25% of people were diagnosed late, with a CD4 count below 200 (fig 5). However when we looked at responses from people who were diagnosed since 2005 this had hardly changed and late diagnoses had actually increased to 26%. In 2008 the Health Protection Agency estimated 32% of adults were diagnosed late, our figures for 2010 were 25%, which suggest that this is still a major issue.

Looking at the last seven years (from 2005) 21% of those diagnosed with HIV and with a CD4 above 250 did not start treatment until their CD4 count had dropped below 200; 5% waited until their CD4 was below 100 before starting ART. 38% of respondents diagnosed in 2010 started ART with a CD4 count below 200, although only 25% had a CD4 count below 200 when diagnosed. There is growing evidence that starting ART at higher CD4 counts (>300) or even earlier may have long term health benefits so it is a cause for concern that people, even in recent years, are waiting until their CD4 drops below 200 to start ART.

Overall 77% of respondents were on ART and the good news is that none of the respondents which were not on treatment had a CD4 below 200, although 15% had CD4 counts below 350; current advice is that individuals with a CD4 count of around 350  should seriously be considered for antiretroviral treatment.

80% of respondents discussed treatment options regularly with their doctor and 60% had changed drugs, either because of side effects (49%), drug resistance (20%) or because better drugs had become available (25%). 20% had taken a treatment break, 5% for over a year. Of those on treatment, the majority (52%) had CD4 counts above 500 (fig 6).

Current Health
23% reported having an illness in the last 12 months due to HIV, with 9% being hospitalised. Respondents were also asked to rate common quality of life issues in order of severity. Obviously some of these conditions will fluctuate over time but it is interesting that fatigue of some sort was rated as an issue by over 80% of respondents, with diarrhoea, night sweats, gastro-intestinal problems, insomnia and sexual dysfunction affecting many. Those on treatment (fig 7) appear to be suffering more than those not on treatment (fig 8). These people are most likely to have been living with HIV the longest however it indicates that, despite succesful ART, people still face many quality of life issues.

High cholesterol was a common treatment side effect, affecting 41% and depression and anxiety affected over half of all respondents.

Adherence
28% of respondents had missed a dose of their medication over the last month (fig 9).

Other issues
The number of people who smoke was much higher that the UK average as was recreational drug use. 9% of respondents stated they injected drugs (fig 10).

However respondents had changed their habits since being diagnosed, although some reported doing more and some less the net change is set out below.

  • Exercise +23%
  • Smoking -13%
  • Alcohol -32%
  • Recreational drug use -25%
  • Injecting drug use 0%
  • Healthy eating +58%
  • Casual sex -36%

People stated they were eating healthier, doing more exercise and reducing habits that carry some risk. Although some injecting drug users reported cutting back, this was balanced with others saying they did more resulting in no overall change.

Vitamins and supplements
55% of respondents reported currently taking took some form of vitamin or supplement (fig 11). The most common was a multivitamin, followed by omega 3, zinc, antioxidants and selenium. 44 people listed other supplements including Brazilian mushrooms, seaweed and turmeric.

21% of respondents (who took vitamins) stated that they took vitamins and supplements to increase CD4 counts with 20% taking them to reduce treatment side effects. 48% spent less than £10 a month on vitamins, but 20% spent more than £20 a month with 3% reporting they spent over £60 a month. Only 39% of respondents had fully discussed the use of vitamins and supplements with their doctor or pharmacist. Income didn’t appear to be correlated to use of vitamins and supplements; 67% of those who took vitamins and supplements had an income below £25K, compared with 63% of those who didn’t.

Health and vitamin use
60% of respondents who reported using vitamins and supplements had a CD4 count above 500 (fig 12), compared to 46% of those that reported no use of vitamins, equally fewer people who used vitamins had a CD4 count below 200 (5.9% vs 9.1%). This is only a preliminary findings and whether this is significant or not needs further investigation. Vitamin use did not appear to be affecting other quality of life issues such as fatigue, insomnia, cholesterol, etc. as the results were similar in both groups.

Only 7% of respondents who took supplements had been hospitalised in the last 12 months compared to 13% who reported not taking any supplements, although given the low numbers involved this is not considered significant.

Those who took vitamins and supplements were less likely to take their pills at the right time. 18% of those who reported taking supplements took their pills at the right time each day (over the last month) compared to 27% of those that didn’t take supplements. However people who took supplements were slightly less likely to miss a dose (24% vs 29%).

These are the preliminary findings; further analysis is being undertaken and the results will be made available when this is complete. The survey also asked people what their research priorities were and these will be published separately.

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