On 17 July, the world’s first HIV Prevention Day was celebrated around the globe. Mainly mediated through Twitter hashtags and think pieces, this newly instated annual day of awareness is in addition to the more established World AIDS Day that takes place on the 1st of December every year. The demand for this new calendar event hints at a sense of urgency and frustration amongst AIDS activists around the world. They think we need to be talking about HIV more — but why? Since the dark days of the 1980s, HIV treatment has gone from strength to strength, culminating in today’s well known slogan U=U — undetectable equals untransmittable. The abbreviation describes how modern HIV medication is so effective that HIV+ people on treatment can have unprotected sex without passing on the virus. On top of these retroviral drugs, we also have PrEP — a preventive drug which is highly successful at blocking the transmission of the virus, thus preventing new HIV infections. In the battle against HIV, we’ve never had so much firepower.
But the problem does not lie in the sophistication of our pharmaceutical products. That’s not what activists are worried about. Activists are angry because, despite how effective these medications have become, millions of people around the world are still unable to access them. HIV Prevention Day was initiated by BreakThePatent.org to bring heat on Gilead, the pharmaceutical giant which manufactures Truvada, the original form of PrEP. Why? Because Gilead’s monopoly on the production of PrEP in many countries allows the company to inflate its price to an extortionate level. In the US, Gilead’s monopoly power means Truvada sells at a staggering $20,000 for a year’s supply. This prohibitive cost prices out the poor, especially those in ethnic minority and working class communities.
The crippling costs of the US healthcare system are notorious — it’s renowned for being unaffordable. On the NHS in Scotland and Wales, PrEP is free, and on NHS England, a free PrEP program has been rolled out to 10,000 people. Though the program in England is already at capacity, activists are pushing the government to make PrEP available to all those who need it. So is PrEP price-gouging a US-specific problem? By no means.
“Since I can’t afford to pay for it myself, I’m potentially putting my health at risk simply by having sex. We all know to use a condom but mistakes do happen. I just want to protect myself.”
In Ireland, PrEP cost around 400 euro for a month’s supply up until last December, when Gilead lost its court battle to keep other PrEP manufacturers out of the Irish market. Since their defeat, generic forms of the drug Truvada are now available through Irish pharmacies for a more modest price, ranging from €60 to just under €100 for a month’s supply. PrEP isn’t available through Ireland’s Health Service Executive (HSE), so users must pay the full price themselves — meaning that a year’s supply could cost up to €1,000.
This may seem like small beans compared to the eye-watering US prices, but it is enough to render the medication unaffordable to countless Irish people.
Neil McKimm is a 25 year old gay man who lives in Dublin. “I’d like to avail of PrEP but can’t afford it”, he tells i-D. “I have a chronic illness and my medication would cost over €500 per month — luckily, Ireland has a Drugs Payment Scheme that means I only have to pay €134 per month. But still, I can barely afford this medication as it is, and PrEP isn’t covered under the scheme at all. Since I can’t afford to pay for it myself, I’m potentially putting my health at risk simply by having sex. We all know to use a condom but mistakes do happen. I just want to protect myself.”
Shockingly, Gilead still wants to fight to reinstate their monopoly on PrEP in Ireland and push the price back up again. They’re gearing up to go back to court next month to ban the cheaper, generic forms of PrEP which are essential to so many lower income Irish citizens. Nauseatingly, at the very time they were engaged in this battle to undercut poor LGBT people, Gilead had the brass neck to appear as a bronze sponsor of NYC Pride 2018. A contingent of ACT UP NY disrupted their appearance at the parade to call out their sorry, two-faced excuse for LGBT activism.
Activists in ACT UP Dublin are making similar efforts to call out Gilead’s exploitation of LGBT consumers and to pressure the Irish government to roll out a PrEP program so that poorer citizens don’t have to contend with the market prices.
Activists have demanded to meet with Ireland’s Minister for Health, Simon Harris, to properly coordinate on the promised rollout of PrEP (he and the Taoiseach (Prime Minister) have both independently committed to having a PrEP program in place by 2019). Despite initially agreeing to a meeting, the minister hasn’t honoured the engagement — prompting ACT UP Dublin activists to stage a visit to his office to demand a meeting in person.
ACT UP Dublin volunteers are engaged in a continuing battle to improve HIV awareness and healthcare in Ireland — they have held public demonstrations to condemn Gilead’s greed, distributed tens of thousands of HIV and PrEP info cards, staged sit-ins at the Department of Health, lobbied government ministers and political parties, held public forums on PrEP and created the first website for PrEP users in Ireland called getprep.online.
Will St Leger, a prominent member of the Dublin group, tells i-D that HIV activism in Ireland has never been more urgent: “ACT UP Dublin was founded in July of 2016 in response to the steady growth in new HIV diagnoses in Ireland”, he tells us. “Ireland is currently experiencing a HIV crisis. There were 508 diagnoses of HIV in Ireland in 2016, representing a rate of 10.7 per. 100,000 population — that’s double the average EU/EAA rate of 5.9 per 100,000. New diagnoses of HIV among gay and bisexual men have more than quadrupled between 2005 and 2015. At the current rate, Ireland is experiencing one newly reported diagnosis every 18 hours, which equates to over 500+ new cases every year since 2016.”
These troubling statistics reveal that PrEP is urgently needed in Ireland right now. Sending prescription medication by mail is illegal in Ireland, and Irish customs will seize any shipments of generic PrEP that enter the country — meaning that buying cheaply online is not a viable way around the high prices of PrEP in Irish pharmacies. If Gilead wins its court battle, the situation will become even more dire (thankfully, a European Court of Justice ruling on Wednesday indicates that Gilead may be losing the battle).
“What happens next depends on whether the government responds proactively or continues to bury its head in the sand. Meanwhile, the health of Ireland’s LGBT community hangs in the balance.”
Adam Shanley, an outreach worker at the Gay Men’s Health Service in Dublin, echoes Will’s alarming sentiments. “Last year there were more new HIV infections than has ever been recorded in the state — that is inclusive of the height of the AIDS epidemic in the late 80s”, he tells i-D. “We’re making considerable efforts on the ground to ensure that HIV prevention options are available”, Adam continues. “But this isn’t enough, we need access to the full prevention toolkit and that includes PrEP. Ireland is a small country that, with full unbarriered access to PrEP, could position itself as a global champion of achieving zero new HIV infections”.
What happens next depends on whether the government responds proactively or continues to bury its head in the sand. Meanwhile, the health of Ireland’s LGBT community hangs in the balance.
“We hope that the Government is truly committed to making this vital prevention tool available and accessible to all who could benefit here in Ireland”, Will continues. “We believe the success of the PrEP programme will largely depend on an active partnership between the statutory bodies and the community.”
HIV activism in Ireland is at a pivotal crossroads. If Ireland’s courts grant Gilead its monopoly and the government continues to vacillate, it’s likely that HIV diagnoses in Ireland will continue to climb despite its activists best efforts.
“It’s a crisis”, Will concludes.