Health rights advocacy group APCOM’s PrEP mascot hits the campaign trail in Bangkok. © APCOM Thailand

‘Be careful. You could get HIV, you could get HIV!’ This is the voice Greg used to hear every time he had sex. That was until he started taking a pill aimed at preventing him getting infected.

Greg was a participant in the PROUD study into the effectiveness of the drug Truvada (emtricitabine and tenofovir disoproxil fumarate) as pre-exposure prophylaxis (PrEP) for men who have sex with men.¹ PROUD, which took place in English cities, found an 86-per-cent reduction in the risk of HIV infection for those taking Truvada, compared with a control group which did not.

PrEP has come at a time when the global battle against HIV is in trouble. Every year, nearly two million people become newly infected. Funding to support the fight against HIV in low- and middle-income countries has fallen, while in some countries HIV drug resistance is growing.²

The World Health Organization recommends offering PrEP as an additional prevention choice to anyone at ‘substantial risk’ of HIV infection, including men who have sex with men, sex workers, HIV-negative people whose partners are HIV positive, and people who inject drugs.³

A seven-country survey of people at high risk found that 61 per cent would ‘definitely’ use PrEP if it were available; but, according to UNAIDS, less than one per cent of people at ‘substantial risk’ of infection have access to it.⁴

Despite a sustained campaign, PrEP is still not available through England’s National Health Service (NHS), so those who want to use it have to buy it online or through private health providers. NHS England said it would not fund full PrEP availability, claiming it is the responsibility of local authorities, but supporters won a judicial review in the High Court arguing that the NHS was responsible.

The NHS’s decision to appeal against this angered many, including Pat McCusker of sexual-health organization Yorkshire MESMAC.

‘The NHS is kicking their responsibility to end the HIV epidemic in the UK into the long grass again,’ he says. ‘There is a long-standing element of prejudice when it comes to meeting the needs of communities that already face other forms of marginalization.’

In August, NHS England began a 45-day public consultation on clinical commissioning policy for PrEP.

The price challenge

PrEP is available in a variety of countries, including the US, France and Kenya. According to UNAIDS, generic manufacture can bring down the price of PrEP to under $70 per person per year, but in some countries it is only legal to import the version of the drug made by Gilead Sciences.⁵

‘Costing is a huge challenge,’ says Kevin Rebe, a doctor who specializes in infectious diseases at Anova Health Institute in South Africa. ‘Trying to find funds where you’re not removing money from the treatment pool. We have to make an investment case that you need both.’

Midnight Poonkasetwattana is Executive Director of APCOM, which advocates for the health rights of gay men and transgender people in Asia and the Pacific. He describes the availability of PrEP in the region, where 5.1 million people are living with HIV, as ‘dire’ and thinks governments need to be smarter. ‘The more we can prevent the population being HIV positive, the less money will be needed for treatment in the future,’ he explains.

PrEP advocates argue that claims it will make people less likely to use condoms and increase rates of sexually transmitted infections (STIs) are inaccurate and discriminatory, comparing them to debates around the contraceptive pill.

‘Saying that everyone is going to drop condoms and they’re going to be all promiscuous... there just isn’t really any data for that,’ says Rebe. ‘It’s quite a prejudicial myth.’

The PROUD study found that STI rates were about the same in those taking PrEP as in the control group. ‘The reality is that a lot of PrEP programmes are going to attract people who can’t, don’t or won’t use condoms anyway,’ says Rebe. For others, PrEP can act as an additional back-up.

McCusker is about to start taking PrEP himself and found it an easy decision to make. ‘It’s an effective medication which is about as safe as aspirin and reduces my risk of getting HIV through having the sex that I enjoy,’ he says.

Does he think he will take it for the rest of his life? ‘Well, I think I’m always going to like getting buggered, so as long as I enjoy that and I’m concerned about HIV then, yes.’

‘The science is very much behind PrEP but it’s definitely not for everyone – it’s not a vaccine,’ says Sarah Hand, Chief Executive of AVERT, which works to raise understanding of HIV and AIDS.

The side effects of Truvada can include nausea and headaches. More serious risks are damage to kidneys, liver and bone density, as well as the worsening of existing Hepatitis B infections. But McCusker is not put off. ‘We’re talking about a medication that’s been available for decades now,’ he says. ‘Some of the healthiest, most active, most buff and beautiful gay men I know are HIV positive and are taking Truvada.’

Rebe thinks that concern over side effects ‘shouldn’t paralyse us on moving forward. You see the odd patient – one in hundreds – where the kidney function might be of concern, but even where that’s happened we’ve been able to monitor and then restart PrEP successfully.’

Gilead Sciences has created a new drug called Descovy, similar to Truvada but safer for the bones and kidneys. Although the company has said that this drug is for HIV treatment, not for use as PrEP, the PROUD study has reported that in late 2016 or early 2017 Gilead will launch the DISCOVER study to compare it to Truvada. This may coincide with Truvada patents expiring and generic versions being more widely available.

Women left behind

‘The drugs you take to stop you dying of an incurable illness and the drugs you take for prevention are two different things,’ says academic Cheryl Overs, who feels that the needs of women are being ignored in the PrEP debate. Women are more likely than men to get lactic acidosis or serious liver problems, according to Truvada’s information sheet. She has called for more research into how PrEP can work for women.

‘The research budget matches the volume of the advocacy, not the numbers of people who are living with HIV. Male activists are letting women down very, very badly,’ she says.

Picketing the department of Health in London over the failure to provide PrEP on the public National Health Service.

Peter Marshall/Alamy Stock Photo

There are around 17.8 million women living with HIV around the world – 51 per cent of all adults living with HIV, with the 15-24 age group particularly affected.⁶

Some argue that access to PrEP is just as important for women as men, particularly as enforcing condom use can be difficult. It can also be useful for women who want to conceive but are concerned about HIV transmission, and provide back-up HIV protection if a condom fails or if a woman is raped.

‘We know that women should have access to PrEP, but the key question is which women,’ says Overs. ‘Women do not just need healthcare below the waist. You’re a whole person and you’re a reproductive person. There’s pregnancy to consider, the impact of STIs and so on.’

Most needy, least likely

Sex workers, in particular female sex workers, are one of the ‘high risk’ groups for which PrEP is intended but about which there are misgivings.

A 40-country consultation of male and female sex workers, published by the Global Network of Sex Work Projects (NSWP) in 2014, raises concerns about PrEP’s efficacy and effectiveness among sex workers, despite its clinical benefits.⁷

The report made several recommendations for the development of PrEP and early-treatment programmes among sex workers, including more research and an increased commitment to promoting their rights through full decriminalization of sex work and strengthening the capacity of their organizations.

Overs is worried that PrEP could be pushed onto sex workers by clients, brothel owners, the state and health authorities. She argues that sex workers may be forced to provide sex without a condom, in order to protect their livelihoods, whether they are on PrEP or not.

‘Health and safety in the workplace is not determined by the women,’ she says. ‘The idea of the market demanding condomless sex for women is really frightening.’

While condoms are relatively self-explanatory and can often be bought cheaply and without too much involvement from a third party, PrEP relies on repeated HIV testing and ongoing access to health workers for check-ups and prescriptions. A person taking Truvada as PrEP who already unknowingly had HIV could develop a resistance to the drugs which would jeopardize future treatment.

‘The people who most need PrEP are the most marginalized; therefore, they’re the least likely to have what it takes to get to a doctor. Health systems are very weak where PrEP is most needed,’ says Overs.

‘It’s not just about PrEP; it’s about that entire range of services that people might need,’ says Poonkasetwattana, for whom community-led service provision is key. UNAIDS recommends that potential PrEP users are involved in developing the service.

PrEP may be useful for targeting at-risk populations but Sarah Hand explains that in some places in the Global South, such as in Eastern and Southern Africa, the situation is more complex as HIV is significant in the ‘general population’.

‘We still need to overcome the issue of just getting that population group engaged in HIV testing and recognizing that they’re at risk of HIV,’ she says. Getting them on PrEP is several giant steps down the line in the current reality.

PrEP could be a useful weapon against the HIV and AIDS crisis, but it is not going to stop it. While a daily pill may work on a biological level, the structural inequalities and injustices that have allowed HIV to spread across every continent in the world, from discrimination and stigma to poverty and poor health systems, also need to be addressed.

For Poonkasetwattana, community engagement and mobilization is where hope lies. He thinks there needs to be more funding for grassroots-led HIV prevention services.

‘Communities need to be well resourced,’ he says. ‘We need leadership and we need to be bold if we are serious about ending the epidemic.’

Amy Hall is a freelance journalist based in England.

1. The PROUD study, documentary by Nicholas Feustel, 2015, vimeo.com/132412294 ↩
   
2. UNAIDS press release, nin.tl/ fundingfall and WHO, 18 July 2016, nin.tl/HIV-resistance ↩
   
3. WHO, Consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection, 2016, who.int/hiv/pub/arv/arv-2016/en ↩
   
4. NCBI, 2012, nin.tl/PrEPattitudes and UNAIDS, 2015, nin.tl/UNAIDSfocus ↩
   
5. UNAIDS, 2015, nin.tl/oralPrEP ↩
   
6. UN Women factsheet, 2016, nin.tl/womenHIV and UNAIDS, ‘Aids by the Numbers’, 2016, nin.tl/AIDSnumbers ↩
   
7. nin.tl/NSWPstudy ↩
   

This article is from the November 2016 issue of New Internationalist.

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