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A staggering 18,000-plus people in the UK don’t know they are HIV positive so could unwittingly be transmitting the infection. Pharmacy staff can help overcome stigma around HIV testing and reach out to at-risk groups in their community

HIV remains one of the fastest growing serious health conditions in the UK, with 103,700 people currently living with the disease, according to Public Health England. Of this number, 17 per cent are undiagnosed and don’t know they have HIV.

In 2014 there were 6,151 new diagnoses and 613 deaths from the infection. What’s more, some 40 per cent of people diagnosed in 2014 were diagnosed late, after they should already have begun treatment. Of this number, one in four were picked up severely late, according to the Terrence Higgins Trust (THT).

Stigma and fear of testing and the virus itself often prevent people from getting tested and diagnosed early, as Paul Casey, head of training and programmes at the Family Planning Association (FPA), explains: “Misconceptions and stereotypes around who can have HIV and how it is transmitted remain. There can be fear around testing, which is often exacerbated with stigma and discrimination of people who live with HIV and thoughts about what it would mean to have a positive diagnosis.”

Sadly, by the end of 2014, there had been a total of 28,690 diagnoses of AIDS in the UK and more than 22,236 people with HIV had died.

Who is affected?

While gay men are still the most affected group in the UK (at 55 per cent of the total, with 3,360 new cases diagnosed in 2014),infection rates among heterosexual people are increasingly common (40 per cent of new diagnoses, with 2,490 cases in 2014) and it is among this group that late diagnosis is most common. It’s not just a young person’s disease either – 48 per cent of people accessing HIV care in 2014 were aged 45 and over.

Cases of HIV passed on through injected drug use remain low, thanks to successful needle exchange and harm reduction programmes, with just 150 cases in 2014. Mother to baby transmission rates are also low in Britain, with just 97 cases in 2014. Blood product related diagnoses are extremely rare in the UK, with none recorded in the last 10 years.

Impact of late diagnosis

Two in five people newly diagnosed with HIV in 2014 had ‘late stage’ infection, which has a huge impact on the person’s chances of survival. In fact, diagnosis after the point at which someone should have started treatment makes them nine times more likely to die within a year of receiving their diagnosis. Of the 613 people who died from the infection in 2014, most were diagnosed late.

“The number of late diagnoses has decreased,” says The Family Planning Association’s chief executive Natika H Halil. “But it is still high at 40 per cent and particularly so among black African people (58 per cent) and heterosexual men (61 per cent). Once diagnosed and on treatment, people with HIV can expect a near normal life span, so it is vital for us to increase testing.”

Cary James, head of health improvement programmes at THT, adds: “If we are going to reduce the number of people who have HIV and don’t know it, we need the number of people diagnosed with HIV to further increase. We can only achieve this through more testing.”

Encouraging testing

National HIV Testing Week is an annual initiative run by HIV Prevention England and coordinated by the Terence Higgins Trust to encourage more people to get tested, as well as raise awareness of treatment and why early diagnosis is key. “Testing for HIV is crucial for prevention,” says the ambassador for National HIV Testing Week, Dr Christian Jessen. “If you get tested and receive a positive diagnosis, you can now immediately go onto treatment, and if you are on medication and taking it correctly you are classed as ‘undetectable’ and the virus can’t be passed on.

“Most concerning is the fact that nearly one in six people with HIV don’t realise they have it,” Dr Jessen adds, “so are putting their own health at risk and HIV could unknowingly be passed on.”

Last year’s HIV Testing Week, held in November, called for faith leaders in the Afro-Caribbean community to address HIV and urge people to get tested and treated. Called ‘It Starts With Me’, the campaign is ongoing and includes media support, funding for local delivery providers, postal HIV testing and engagement work. It promotes increased condom use, helps raise awareness of undiagnosed HIV and highlights the heightened risk of onward transmission when someone first contracts HIV. Pharmacy customers can be directed to their nearest HIV testing centre.

Home testing kits

To encourage early diagnosis and improve access to HIV tests, several initiatives and launches have occurred. For instance, as part of HIV Testing Week, a free home testing kit was offered throughout England and funded until 1 January this year. However, whether the tests will continue to be offered for free now depends on local authorities.

The tests can still be ordered online (see www.test.hiv and enter a postcode to check availability in your area) or customers can go to any sexual health clinic for a test. The home test is simple to use and involves giving a small droplet of blood and sending it off for testing. (See the Q&A panel below for more information about HIV testing.)

A new, legally approved, commercial home test is also now available. Called Bio Sure HIV Self Test, it gives customers a result in just 15 minutes at home, with no need to send a blood sample away for testing. It works by detecting antibodies in the blood and two purple lines indicate a positive result. Experts advise that a positive result should be reconfirmed at a clinic. Bio Sure HIV can be bought online.

HIV test Q&A

Q: Where can customers get a free HIV test?
A: Either at a sexual health clinic, via a GP, some pharmacies or through charities such as the Terrence Higgins Trust. Some areas also offer free HIV home tests to at-risk groups. Visit www.test.hiv to find out more.

Q: Who is eligible for a free test?
A: Gay and bisexual men and African people are considered higher risk, so only they are offered the free postal test.

Q: What if a result is positive?
A: If a customer has done a home test which has a positive result, they should go immediately to a sexual health clinic or GP to have the result confirmed.

Q: Are results kept private?
A: Sexual health and GUM clinics are legally bound not to reveal confidential details and test results. If a GP does the test then the result will appear on the patient’s medical records, but no one else has access to these without their prior permission.

Q: What does a test involve?
A: The home test involves taking a finger tip sample of blood and sending it off for testing.

Q: Where can customers buy a home test kit?
A: Visit hivselftest.co.uk

Q: When should people take an HIV test?
A: If someone has exposed themselves to risk – for example, had unprotected sex or shared a needle or drug equipment with someone whose HIV status they don’t know. In particular, sexually active gay or bisexual men are recommended to have an annual test and black African men and women should have a regular HIV and STI test. Tests should be more regular for all groups if having unprotected sex with new or casual partners.

Public health role for community pharmacies

Paul Casey at the FPA explains that pharmacy staff can make it easier for customers to access and understand the importance of HIV tests and early diagnosis: “Community pharmacies are ideally placed to reach people who may not otherwise engage with sexual health services or think to take an HIV test. Using display posters, giving out leaflets and offering to have a confidential chat with customers are all ways of helping raise awareness and offering support when it’s needed.”

He believes the pharmacy is an ideal place to give customers preventative advice on sexual health too. “Customers might prefer discussing their sexual health with a pharmacist rather than their family GP, and groups with higher disposable income might prefer to buy products like EHC [emergency hormonal contraception] rather than getting it on the NHS. It can also be a handy place to pick up condoms.”

For more information, see the FPA’s website for their dedicated section for health professionals.

Kat Smithson, policy and campaigns manager at the National Aids Trust, believes there is definitely potential for pharmacies to take on a public health role in HIV and sexual health in their communities. “Informing and advising customers, especially in high prevalence areas, is something pharmacy staff can do. See if you can provide a test in your pharmacy and if not, then signpost customers to local services.”

Kat also urges pharmacy teams to ensure their knowledge is up to date about HIV testing and treatment as a lot has changed recently. “You have an informative role and an opportunity to engage people in this vital area. Be aware of communities that are at risk in your area. Look for resources you can use and normalise it as much as possible. Have subtle information about HIV on display in your pharmacy,” says Kat.

Suggestions on how to get more involved in HIV testing and awareness promotion include:

  • Holding outreach events with key groups in social venues
  • Encouraging local politicians to visit testing sites and get tested
  • Special testing sessions
  • Enhanced publicity for local existing services
  • Educational events with local primary care clinicians.

What is PrEP?

HIV Pre Exposure Prophylaxis (PrEP) is the use of antiretroviral drugs by people who don’t have HIV prior to potential exposure to the virus in order to prevent its transmission. Worldwide studies have found it can be an effective means of preventing HIV transmission. Two EU studies of oral PrEP using a combination of tenofovir and emtricitabine among men who have sex with men (PROUD trial) in the UK and the IPERGAY trial in France in 2015 found an 86 per cent reduction in HIV acquisition. Local authorities are currently making commissioning decisions about the use of PrEP.

Kat Smithson, policy and campaigns manager at the National Aids Trust, comments: “While questions were raised about whether using PrEP would have a negative effect on behaviour, such as condom usage, the PROUD trial found this wasn’t true. If commissioned effectively, PrEP could have a huge impact on health and HIV transmission.”

At National Aids Trust, Yusef Azad, director of strategy, says: “We can look at the example of San Francisco for what works. Last year the city saw its lowest number of new HIV diagnoses on record. And since 2012, when PrEP was introduced, new diagnoses have dropped by 30 per cent. This is what we need to be doing. PrEP is an essential additional prevention option for people at high risk of HIV. A significant proportion of those 6,151 people diagnosed last year would still be HIV negative if they had taken PrEP.”

How to tackle HIV sensitively in pharmacy

“There is a stigma around HIV and asking for a test,” explains Kat. “It’s important to get the language right when you offer a test. We need to normalise it – it should be just like offering any other health screening test. When you talk to customers about HIV, do it in a non-judgemental way and don’t make people feel singled out. It’s essential that pharmacy staff are well informed about HIV and also know about the stigma attached to it, so you’re able to answer questions confidently.”

Family Planning Association spokesperson Alistair Hudson urges people to start taking more responsibility for their sexual health. “It needs to become like a routine visit to the dentist every six to 12 months. You don’t just go when you have symptoms.”

Alistair believes the most important thing for pharmacy staff to know is where the testing centres are in their community. “Then be aware of your local community and what public health issues there are. You need to normalise HIV testing as much as possible. Start by putting up posters in your store about HIV. It’s a chronic, but treatable illness, just like any other, so we need to treat it as such,” he adds.

Paul Casey agrees: “It’s important to remember that taking an HIV test is potentially life-changing for a customer, and they come with apprehension, fear, misconceptions and in need of support and reassurance. Staff need to be confident and informed in what they are saying, and not be judgmental.”

 Staff need to be confident and informed in what they are saying, and not be judgemental

Study finds earlier treatment lowers AIDS risk

A major international randomised clinical trial has found HIV-infected people have a much lower risk of developing AIDS or other serious illnesses if they start anti-retroviral drugs sooner.

The START (Strategic Timing of AntiRetroviral Treatment) study, published in the National Institute of Allergy and Infectious Diseases (NIAID) journal, is the first large-scale study to establish that earlier treatment benefits all HIV-infected individuals.

Dr Anthony Fauci, NIAID director, said: “We now have clear-cut proof that it is of significantly greater health benefit to an HIV-infected person to start anti-retroviral therapy sooner rather than later. Early therapy conveys a double benefit, not only improving the health of individuals but at the same time lowering their viral load and reducing the risk they will transmit HIV to others.”

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