Monday 5th February marks the start of National HIV testing week, where people across the country are encouraged to get a test for HIV. This year marks the 10th anniversary of the event, and the last decade (and indeed previous ones) has wrought significant change in HIV care. In view of this change, is it time for us to change the way we think and talk about testing for HIV?
Whilst it is more widely known now that HIV is not a death sentence, and people living with HIV can live long and healthy lives, it can sometimes seem that attitudes around HIV testing have not all moved on to reflect this.
HIV or Human Immunodeficiency Virus was first identified in the early 1980s, but studies of the virus have shown that it had likely been circulating in humans for several decades prior to that, possibly having made the jump from another primate species as far back as the late 1800s.[1] HIV affects the cells of the immune system and leads to low levels of CD4+ T Cells (also known as T Helper Cells). Once levels of CD4+ cells fall below a critical amount, cell-mediated immunity is lost, leaving the body susceptible to opportunistic infections and cancers. AIDS (Acquired Immune Deficiency Syndrome) is the name given to a number of these potentially life-threatening infections and illnesses that can occur when the immune system is severely compromised by HIV.[2] Many clinicians and people living with HIV (PLHIV) prefer to use the term advanced or late-stage HIV, rather than AIDS.
If diagnosed promptly and started on treatment straight away, most people living with HIV now will never experience late-stage HIV, and treatments mean that people living with HIV live long and healthy lives. [3] Why then, is there still a persistent reluctance to test for HIV amongst many, and sometimes even a reluctance by health care providers to discuss or offer it? Although the covid-19 pandemic makes trends between 2019 and 2022 difficult to interpret, UKHSA data on HIV testing shows that 15% fewer people tested for HIV in 2022 compared with 2019. In addition, amongst those eligible attending specialist sexual health services in England, only 38% of eligible heterosexual and bisexual women tested, with 40% not offered and 22% declined.[4] In contrast, the highest uptake amongst sexual health service attendees was by gay, bisexual and men who have sex with men (GBMSM), of whom 74% tested and only 3% declined. In addition, tests nationally increased by 7% in 2022, making it the highest number ever reported.
This disparity in testing rates is likely multifactorial, but the high uptake in GBMSM almost certainly is related to much of the brilliant work done by organisations working with the GBMSM community and the community themselves. Conversely, and less positively, the lower uptake amongst heterosexual and bisexual women likely reflects something of the persistent myth that HIV only or predominantly affects gay men. In fact, HIV can affect anyone of any age, gender, ethnicity or sexuality, and around half of those living with HIV in the UK identify as straight. In 2022, the UK Health Security Agency (UKHSA) announced that the number of new HIV diagnoses is now higher in people who identify as heterosexual than for gay or bisexual men.[5]
In fact, the problem is more than just a disparity in testing rates. A YouGov online poll in 2021 revealed that around 77% of people in the UK have never had a test for HIV, something which needs to change if we are to achieve the Government’s ambitious goal of ending new cases of HIV by 2030[6]. In addition, UKHSA data released this January have shown that heterosexual testing rates for HIV have still not recovered to pre-covid levels and estimated that of the approximate 95,900 people in England living with HIV, around 4.5% are currently undiagnosed, do not know they have the virus and aren’t on treatment.[7]
A 2010 systematic review looked in detail at barriers to testing as experience by patients and providers in Europe, as well as policy and system barriers. One of the biggest barriers identified at patient/client level in this study was the perception that they were low-risk and therefore did not need a test. This view was prevalent in several population groups studied including test-naïve MSM in the Netherlands, a South London black African community and pregnant women. Other significant reasons cited for not accessing testing were fear of HIV disease, fear of disclosure and difficulty knowing how or where to access a test.[8] Although this study is now over 10 years old, the recent testing figures from UKHSA suggest that some, if not all, of these barriers are still in play to a greater or lesser degree.
The theme for this year’s National HIV testing week is ‘I test’ and aims to empower people to become ‘part of the generation that stops HIV’ by engaging in regular testing. Their website (It Starts With Me) has a wealth of information on HIV, prevention, testing and treatment, and includes information on why it’s important to test. Healthcare professionals may also find this useful to inform their conversations with patients and service users. The key messages are:
- Testing is the only way to know for sure if you have HIV. Many people may experience a short ‘seroconversion’ illness when first infected with the virus, but this can be mild and is often missed. Consequently, most people with HIV will not have any symptoms at all in the early stages of the illness.
- If you do have HIV, finding out early is important so that you can commence treatment promptly and stay well. The sooner you start treatment, the less likely you are to experience serious illness and people who are diagnosed early and start treatment can expect to live a normal lifespan.
- Once you’re on treatment and your viral load becomes undetectable, you can’t pass the virus on to anyone else.
In recognition of the changing picture of HIV as a long-term condition that can be well managed, the CDC has since 2006 recommended routine provider-initiated testing for HIV in all healthcare settings (i.e. at least once in a lifetime for all patients aged 13-64 when presenting to healthcare settings).[9] In reality, this change has been slow in happening, however there is reason for optimism. Not least because of the recent announcement of the expansion of opt-out HIV testing to 46 Accident and Emergency sites across England. It is hoped that the positive effects of this will be two-fold; firstly that this provider-initiated testing will increase diagnosis rates and result in fewer late diagnoses of HIV infection by not missing opportunities to test when patients encounter health services. A second benefit however is that it starts to move HIV testing away from the idea that this is a specialist test, requiring specific counselling skills and only for specific at-risk groups, and more towards the idea that HIV testing should be for everyone who wants or needs it.
In the words of the National HIV Testing Week campaign:
“We have the tools to stop HIV. Each of us can play our part.”
Laura French
Member of the FPH Sexual and Reproductive Health SIG
REFERENCES
[1] CDC: Where did HIV come from? Online: About HIV/AIDS | HIV Basics | HIV/AIDS | CDC
[2] NHS Conditions: HIV and AIDS. Online: HIV and AIDS – NHS (www.nhs.uk)
[3] Terrence Higgins Trust: Stages of HIV Infection Online: Stages of HIV infection | Terrence Higgins Trust (tht.org.uk)
[4] UKHSA official statistics: HIV testing, PrEP, New Diagnoses and care outcomes for people accessing HIV services: 2023 report. Online: HIV testing, PrEP, new HIV diagnoses and care outcomes for people accessing HIV services: 2023 report – GOV.UK (www.gov.uk)
[5] Terrence Higgins Trust: Myths about HIV. Myths about HIV | Terrence Higgins Trust (tht.org.uk)
[6] 77% of people in UK have never had an HIV test | Terrence Higgins Trust (tht.org.uk)
[7] THT HIV statistics. Online: HIV statistics | Terrence Higgins Trust (tht.org.uk)
[8] Jessika Deblonde, Petra De Koker, Françoise F. Hamers, Johann Fontaine, Stanley Luchters, Marleen Temmerman, Barriers to HIV testing in Europe: a systematic review, European Journal of Public Health, Volume 20, Issue 4, August 2010, Pages 422–432, https://doi.org/10.1093/eurpub/ckp231
[9] Diepstra KL, Cunningham T, Rhodes AG, Yerkes LE, Buyu CA. Prevalence and Predictors of Provider-Initiated HIV Test Offers Among Heterosexual Persons at Increased Risk for Acquiring HIV Infection — Virginia, 2016. MMWR Morb Mortal Wkly Rep 2018;67:714–717. DOI: http://dx.doi.org/10.15585/mmwr.mm6725a3external icon.
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