When you look at the effects of HIV over the last 35 years, the numbers are staggering. The virus has killed over 35 million people across the world to date, according to the World Health Organisation. It has largely affected gay men, since a man who has unprotected anal intercourse is at an especially high risk, as well as communities in certain parts of Africa, where healthcare infrastructures have failed to control the spread of the virus. For women of reproductive age (ages 15–49), HIV/AIDS is the leading cause of death. But really, anyone can be susceptible to HIV/AIDS.
That is, until now. In the last few years, scientists have a developed a "miracle" HIV prevention drug. Known as PrEP – short for “Pre-exposure prophylaxis” – it can be given to people who are at high risk of contracting HIV before it ever happens, meaning that, even if they have unprotected sex with a partner who is HIV positive, or put themselves in another high risk situation, doctors say there’s a 99% guarantee rate that they won’t contract the virus.
Great, right? Only, the bad news is... PrEP is not available to people everywhere. Far from it. It is currently only available through healthcare systems in the U.S., Canada, France, Israel and Kenya. Now consider that AIDS organisation UNAIDS is warning of a dramatic resurgence of the virus. According to their statistics, 37 million people have AIDS today, but only 17 million are getting antiretroviral drugs – the treatment which 1. Keeps them alive and 2. Stops the virus from being infectious. We are once again at crisis point.
The International AIDS Conference in Durban, South Africa, last month, threw up a few reasons for why the AIDS epidemic is slipping out of our control. According to the Guardian, these were; increasing levels of resistance to antiretroviral drugs, a lack of proficient funding into new HIV research, the high cost of treatment, the stigmatisation of the virus, and “the lack of power many women have in sexual relationships.” All of these issues apply to people living with AIDS in the UK, of which there are over 100,000.
So, could PrEP be the answer, reducing the number of diagnoses in the UK and beyond? Below, six passionate women working in the field of HIV shed some light on the problem...
How PrEP works
Terri L. Wilder is an HIV/AIDS Education Director in the U.S., where PrEP is more accessible than the UK. She explains how it works over there: “People who are interested in PrEP find a medical provider who is willing to write a prescription for it. The medical provider and the patient have a discussion and determine if the patient is a good candidate for PrEP. If the person is a good candidate, the medical provider tests the person for HIV. If the HIV test comes back negative, the person can start on PrEP.”
Once you’ve got your PrEP prescription written, you’ll take a daily dose of it and visit your doctor regularly for check ups. Side effects are thought to be minimal. The whole thing might sound time consuming, but according to AIDS organisation the Terrence Higgins Trust, “People living with HIV need to take lifelong treatment. PrEP consists of fewer drugs and people only need to take it during periods when they are at risk of HIV.”
“PrEP has the potential to turn the tide on the HIV epidemic,” explains Deborah Gold, Chief Executive of the National AIDS Trust. “Despite the incredible work of three decades in HIV prevention, the numbers who acquire HIV in the UK continue to rise. Condoms remain a crucial mainstay of intravenous prevention, but the evidence shows that condoms alone will not end HIV.” Deborah says that we “need to try something else”, and believes PrEP could be that change.
Likewise, Laura, who is 38, works in social care, and is HIV Positive, desperately wants to see PrEP come to market in the UK. “I am a Person Living with HIV and if I had the option of taking PrEP before I was diagnosed, I would have. The increase in cases of HIV diagnosis shows that current prevention methods are not enough.” For Laura, a young African woman living in London, PrEP would mean “increased control and sexual health choices for young women of child bearing age who intend to have children, and for who there may be episodes where we choose not to use a condom because we would like to conceive.” Just one example of a scenario in which PrEP could change people's lives.
Why PrEP is unavailable on the NHS
If PrEP is so promising, then why can’t we get it? The crux of this issue comes down to pricing. The drug company that has developed PrEP, Gilead, have placed the cost of it so high (in order, they say, to recoup the costs of development) that the NHS claim they can't justify paying for it. This has led to an ongoing fight between HIV activists and charities, the NHS, and the drug company. As of June, reports the BBC, an NHS watchdog has even been asked to evaluate the NHS’s decision not to onboard PrEP. As it stands, Gilead want to charge around £355 per person per month in the UK for a course of PrEP.
In the mean time, unsurprisingly, the disparity between cost and need is aggravating people. Donna Riddington, 43, is an artist and HIV activist living in London. She says: “As someone who watched friends die one after the other through the early 90s from AIDS-related illnesses, to see pharmaceutical company’s greed again standing in the way of essential medicine to prevent HIV infection is a disgrace.”
Dr Sarah Fidler, Consultant in HIV medicine and Senior Clinical academic at Imperial College London agrees with Donna. "PrEP is an essential part of all HIV prevention approaches and must be made available now for those in need,” she states. “The immediate barriers to widespread PrEP implementation are unacceptable drug pricing and artificial division of the NHS funding pathways.” In other words, the NHS are saying they can’t afford it, but Dr Fidler, for one, believes there is a way.
What pisses a lot of people off in the PrEP conversation is the widespread belief that, if this HIV prevention drug were properly rolled out on the NHS, it would not only reduce the number of HIV diagnoses, but cost the tax payer less money in the long run. In the words of HIV drug pharmacist Collette Brydon, “PrEP should be funded as a vital public health initiative especially as we all know the costs of prevention are tiny compared to HIV treatment – think of the thousands of pounds which could be saved.”
To make matters worse, as long as PrEP is not available via the NHS, people will find other ways to get hold of it. That could mean buying dodgy stand-ins on the web. “Without PrEP on the NHS,” explains Deborah Gold, “we won’t be able to ensure fair and equal access, and we risk an unregulated market buying PrEP from abroad, which carries risk of buying the wrong drug, drug resistance and wrong dosing. The moral imperative for PrEP is overwhelming.”
PrEP might be celebrated as a “miracle drug” for HIV prevention, but it’s not without its limitations. It’s extremely rare, but according to AIDS Map, there are risks of some people having or developing a PrEP resistant strain of HIV due to virus mutations. There are also logistical issues, like the fact that it’s a pain to be on a regular dose of preventative medication, so some people might skip a dose. Or as Laura puts it, “prevention is not a one size fits all, things can change and life can be complicated."
On top of that, it is very difficult to get PrEP to the all of the people who might need it, as some may not identify themselves as being in a high risk group, or have access to healthcare. On this last point, Dr Sophie Harman of the School of Politics and International Relations at Queen Mary London, who has been working on a film about women living with AIDS in East and South Africa, says that PrEP has a much higher chance of fighting the AIDS crisis in places like the UK than developing countries.
“PrEP will be effective in places with functioning health systems where you can identify key populations and have reliable data sets,” says Harman. She explains that, in developing countries, where there is an informal economy and people won’t want to lose a day’s wage to go to a clinic, where there is a poor transport network to get you to a clinic, and where people have more pressing health concerns like malaria, alongside a skepticism of Western medicine, the challenge of getting people on PrEP is enormous, “unfeasible” even.
And her take on the situation here in the UK? Harman says the focus of who needs PrEP falls on the suspects who can shout the loudest, and that women are usually less prevalent in these conversations. “In the UK and U.S., women and black African communities aren’t seen as a key vulnerable population for HIV, while prevalence falls to men who have sex with men.” The question is, says Harman, not just how we get PrEP for everyone who might need it, but how we eventually target the most marginalised communities in need of PrEP... and without stigmatising them.
What’s happens next?
Over in the U.S., this is a question that often plays on Terri’s mind. Access to PrEP is not always equal; “It often depends on where the person lives in the United States and if they have medical insurance or the fiscal resources to cover the cost of the medication, labs, and office visits,” she says. “And right now a great deal of PrEP messaging has been created to target gay men. My dream is for more women to learn about PrEP because women desperately need an HIV prevention tool we can control.”
Terri says that, if there is a plan to end AIDS in the UK, PrEP should be one of the main points of the plan. But we need to work together. “Since there are so many moving parts to accessing PrEP, the government and community must collaborate to make it a reality.”
Donna concurs: “We need to rally together on fighting for PrEP access because it could change and save lives to the extent that the virus might be altogether eradicated.” Her immediate plan is to continue working with HIV activist group ACT UP to draw attention to the issue of PrEP access and lobby drug companies to drop the price. “I intend to be a part of the growing, powerful activist movement that will bring PrEP to women, trans people, and people of colour,” says Donna. “For me, PrEP is about individual empowerment.”