All posts by ACT UP Dublin

Demonstrate for PrEP in Dublin!

In response to the news that Irish Customs has been cracking down on imports of affordable generic versions of PrEP into Ireland, ACT UP Dublin has organised a demonstration for Friday, August 4th. We’ll be outside of the HPRA offices on Earlsfort Terrace (across from the National Concert Hall) from 12 to 2pm.

Please join us as we call on the government to show it’s serious about addressing Ireland’s HIV crisis by making PrEP available now.

PrEP in Ireland Update

The Medical Independent published a well-researched and detailed article on July 20th looking at where we are in the campaign to make PrEP available in Ireland. Unfortunately the news isn’t great.

Throughout the last year the HSE and Government pointed to a demonstration project that was set to “commence later this year or in early 2017.” However in the MI article Fiona Lyons, clinical lead for the implementation of the National Sexual Health Strategy, admits that “the window of opportunity for doing a PrEP demonstration project has closed.” This means that until the HSE provides PrEP, the only option for people to access PrEP in Ireland will continue to be self-sourcing affordable generic versions.

Unfortunately, as the MI also reports, that is becoming more difficult. Customs has been seizing shipments of generic PrEP coming into Ireland and the Health Products Regulatory Agency (HPRA) has been investigating the sources that people are using to obtain these drugs. This has resulted in the primary supplier of generic PrEP suspending shipments to Irish addresses, leaving current and potential PrEP users scrambling to find other ways to access the medications.

Following contact with the HPRA, the HSE PrEP Working Group recently circulated recommendations to healthcare providers to discourage patients from self-sourcing PrEP. They specifically request that they “do not direct patients” to iwantprepnow.co.uk, one of the most comprehensive and respected sources for information about how to use PrEP, how to self-source it safely, and how to make sure you get the proper medical support.

The working group’s email doesn’t mention that the generic versions and suppliers listed at iwantprepnow.co.uk are the same ones that the 56 Dean Street clinic in London tested and found, in every case, to be genuine. To this point the HPRA have offered no evidence that would suggest that anything has changed since the 56 Dean Street testing occurred or that anyone who is self-sourcing PrEP has obtained anything but the real thing.

All of this underscores the urgent need for HSE to provide PrEP through conventional channels. In one significant step towards that, Gilead in June applied to the HSE for reimbursement for Truvada as PrEP. This initiates a process where the costs involved in providing PrEP are analysed by the National Centre for Pharmacoeconomics (NCPE).

After an initial rapid review—which is supposed to take “approximately 4 weeks“—the NCPE will either approve Truvada for reimbursement, or (much more likely) will require a full pharmacoeconomic assessment. This process is supposed to take no more than 3 months from the formal submission of evidence, but before that happens there’s a period of notifications and consultations.

Overall, it seems unlikely that PrEP would be available until 2019 if nothing is done to accelerate this process or to provide PrEP on an interim basis. According to a July 26th written answer from Catherine Byrne to a Dáil question, the time frame for the HSE reimbursement process “would be in the order of at least 6 to 12 months.”

However, even when that is concluded, funding needs to be budgeted for PrEP and for the support services that will be required to make it available. That is unlikely to happen mid-year, so even if things go relatively smoothly in the reimbursement approval process, we’re likely to have to wait until the 2019 budget to see funding for PrEP.

One further wrinkle is that Gilead Sciences, the maker of Truvada, has filed suit in the High Court to block generic manufacturers from entering the market in Ireland with significantly cheaper generic versions of Truvada. The original patent for Truvada expired this month, but Gilead has obtained extended protection with a Supplementary Protection Certificate. A lawsuit over the validity of that SPC is currently awaiting a hearing at the European Court of Justice, but a decision isn’t expected before mid-2018.

It’s not clear whether an SPC is currently in force in Ireland or what the basis of the Gilead lawsuit is, but it seems clear that Gilead is not going to allow their patent to expire without a fight.

A lower price for the medication would mean much faster provision of PrEP by HSE and other European national health systems. So the outcome of the suit before the EU Court of Justice is being watched closely across the continent.

PrEP Policy Review for Ireland

Last Thursday, June 15th, HIV Ireland and the Gay Health Network launched a new policy paper on PrEP in Ireland and called “for Pre-Exposure Prophylaxis (PrEP) to be made a public health priority in Ireland,” adding that in light of record levels of new HIV diagnoses in Ireland, “PrEP must be introduced as a key HIV prevention intervention.”

The report, titled Pre-Exposure Prophylaxis Scoping and Policy Options Review, was commissioned to “provide evidence-based guidance on PrEP efficacy, while establishing the views of key populations affected by HIV, and stakeholders directly and indirectly involved in the provision of HIV services throughout Ireland.”

Author Ann Nolan conducted an extensive review of the evidence around PrEP and conducted interviews with a range of healthcare providers and advocates, as well as current and potential PrEP users.

This document will be a valuable resource for advocates for PrEP availability in Ireland, and adds strong new voices to the campaign for PrEP in Ireland.

masc.life Interview with Will St. Leger

We’re big fans of masc. The interviews and photos are consistently engaging and provocative, touching on topics too rarely given the attention they deserve.

So we are delighted that our own Will St. Leger is the subject of an interview published today. Will talks about the frustration and anger that animates our HIV activism, and about how activist art has helped to focus and guide that energy in productive ways throughout the history of the epidemic.

Will has been the driving force behind our event “All Together Human”, an exhibition of protest art for Irish AIDS Day . The one-day show is on June 15, 2017, and runs from 6 to 10pm at Filmbase in Temple Bar. Please come down and have a look and a chat!

All Together Human – protest art show for Irish AIDS Day 2017

We’re delighted to announce that we’ll be hosting an art exhibition for Irish AIDS Day, June 15th, called “All Together Human”. The show will be at Filmbase in Temple Bar and will feature work from a range of Irish artists, with proceeds from sales going to support ACT UP Dublin.

We’ll be sharing more details as we get closer to the day. To keep up with announcements you can also check out our Facebook event page.

Come Out Fighting – download here!

On Wednesday, April 26th, we launched our new zine Come Out Fighting at Pantibar in Dublin. The zine was created by Butcher Queers and Masc. for ACT UP Dublin and features work from writers, activists, photographers and artists.

It was a fun evening, fantastic for everyone involved in creating the zine to get a chance to meet each other in person. We gave away dozens of copies and had a lot of lively conversations about the zine and what ACT UP is doing.

We think there’s something special about holding an actual paper copy of a zine in your hands, but we also want to make sure people who weren’t able to get a copy have a chance to read the zine. So we’ve put the whole thing online. Click here to view or download a copy.

If you’d like to contribute to our next issue, please get in touch! You can reach us through our Facebook page, or directly by email at act.up.dublin@gmail.com.

Undetectable = Untransmittable

Have you noticed the hashtag  #UequalsU? Wondered what it means? Well it’s pretty simple, it stands for “undetectable = untransmittable” and this is what it means:

People living with HIV who have an undetectable viral load do not transmit HIV to their sexual partners.

Did you know that? Did you know that if you have HIV and are on treatment and virally suppressed, it doesn’t just reduce the risk that HIV can be transmitted, it effectively eliminates it?

Well it’s true. Results from the PARTNER study published last year showed that among 888 mixed-status couples (one parter was HIV positive, the other HIV negative) who reported more than 58,000 individual acts of condomless sex, there was not one instance of transmission from someone with an undetectable viral load to a negative partner.

These decisive results—added to finding from previous studies, as well as 20+ years of real-world experience with effective combination therapy for HIV—are about as conclusive as they can be. That’s why we’re comfortable saying that people with an undetectable viral load pose no transmission risk to their sexual partners.

In February, ACT UP Dublin became a community partner with the Prevention Access Campaign. That means we’ve joined dozens of researchers, organisations and individuals who’ve also endorsed the U=U Consensus Statement.

We think it’s a message that everyone who’s living with HIV deserves to hear loud and clear. We are committed to sharing this incredibly important information as widely and as often as we can.

HIV diagnoses reach new high in Ireland

Provisional figures from Ireland’s Health Protection Surveillance Centre show more new HIV diagnoses were reported in 2016 than in any previous year. The final total showed about a 6% increase over 2015 figures, which had previously been the highest on record.

Final adjusted figures won’t be known for some months, nor will the specifics regarding mode of transmission, age at diagnosis, or previous diagnosis. In past years the annual HIV report was released in May or June, however last year the 2015 report was not released until October. Some preliminary statistics, including demographic information, were released as a slide set at the end of May last year.

While this increase is less dramatic than the 30% increase from 2014 to 2015, it’s important to note that the 2015 increase resulted in part from a change in the way that HIV diagnoses were reported. This change meant that a greater number of people who had been previously diagnosed abroad were included in the figures. We discussed this in detail in our previous post, here.

Part of the increase in 2015 was also due to an outbreak of HIV in Dublin among people who inject drugs. That outbreak was contained by February of 2016, so other modes of transmission are likely to account for the continuing increase in new diagnoses.

ACT UP is watching: A note about new diagnoses

Some of us at ACT UP work together as the Knowledge Base. We are interested in researching and analysing as much as we can about the HIV epidemic in Ireland and finding ways to share that information with a wider public. This post is the first in an occasional series called “ACT UP is watching” where we respond to incomplete or misleading statements about Ireland’s HIV crisis.

[Note: an earlier version of this post relied on estimated figures for gay and bisexual men previously diagnosed abroad for the years 2011 and 2012. We have received the current figures from HPSC for 2011 to 2015 and have updated the charts and references in this post]

act-up-is-watching-sin-city

Last year, Ireland’s Health Protection Surveillance Centre (HPSC) recorded 485 new HIV diagnoses—the highest number ever in the history of the epidemic in this country. Of particular concern, new diagnoses among gay and bisexual men have increased dramatically over the past decade, more than quadrupling since 2005. ACT UP Dublin believes that these figures underscore the compelling need for a more effective response from government and community organisations.

In recent news reports, some stakeholders have tried to minimise the urgency of these figures. They’ve suggested, for example, that if we exclude people who were previously diagnosed outside of Ireland, the numbers of first-time diagnoses are consistent with years past. Some also suggest that the increase in diagnoses may be attributable to increased rates of HIV testing, implying that the rising numbers reflect a public health success story rather than an inadequate and ineffective response. In this post, we examine these claims in light of the available data.

• Are first-time HIV diagnoses within Ireland increasing?

The number of “new HIV diagnoses” in Ireland for 2015 includes, as it has in previous years, people who were previously diagnosed in another country but who moved to Ireland during the reported year. In 2015 the HPSC changed the way HIV diagnoses are reported which led to an increase in the number of people who were previously diagnosed abroad, including gay and bisexual men. This accounts for some of the magnitude of the overall increase in 2015. It also indicates that figures from previous years undercounted the actual number of people who were first diagnosed abroad but who now live in Ireland.

Since we know the number of gay and bisexual men reported as previously diagnosed abroad for the past 5 years, we can directly compare the number of first-time diagnoses over that time. That is, we can subtract the number of men previously diagnosed abroad from the total number of reported diagnoses, leaving just the first-time diagnoses. These adjusted numbers (the blue section of the bars in the graph) show an average yearly increase of about 12% in first-time diagnoses among gay and bisexual men through those years. From 2013 to 2014 the increase was 13% and from 2014 to 2015 it was 15%. Overall there has been a 50% increase in new diagnoses from 2011 to 2015.

It’s true that the total number of new diagnoses in 2015 is made larger because of an increase in the number of people who were previously diagnosed abroad. However the overall trend among gay and bisexual men is quite similar regardless of whether you include or exclude those previously diagnosed abroad, and it is clearly rising.

Certainly the increase seems to be sufficiently worrying for health authorities to have established a multisectoral response group earlier this year that is intended to improve the state’s response to this rise in new HIV (as well as other STI) diagnoses among gay and bisexual men. Although we are pleased to know that there is an effort to increase communication and coordination among existing agencies, it is not clear how effective this new group—operating without additional funding, meeting behind closed doors away from public view, with uncertain terms of reference—will be on its own.

In short: even accounting for those previously diagnosed elsewhere, it is clear that there has been a real and significant increase in HIV diagnoses among gay and bisexual men over the last several years.

• Are new diagnoses due to recent increases in HIV testing?

STI/GUM services, especially those specifically serving the gay and bisexual men and trans people, have been operating at capacity for years. Until very recently, there has been no significant increase in capacity for HIV testing.

In 2016, new testing opportunities have been created through the Know Now rapid testing project and through the addition of a Monday afternoon clinic at Dublin’s Gay Men’s Health Service. These are welcome developments and long overdue, but the 2015 diagnosis numbers cannot reflect these testing opportunities which did not exist yet.

We know of no basis for claiming that gay and bisexual men were testing in greater numbers or more frequently before this year. The MISI 2015 online survey was the first attempt to assess sexual health knowledge and behaviour among gay and bisexual men in Ireland since 2010 and it provides some estimates for how often and how recently gay and bisexual men have tested for HIV and other STIs.

However, because of the way the survey was conducted, the MISI data cannot be reliably compared to previous surveys, and therefore cannot tell us anything meaningful about changes in testing rates over time. Furthermore, while men from Latin America now account for as many new HIV diagnoses as men born in Ireland, only 1% of respondents to the MISI 2015 survey were from Latin America, meaning we have almost no idea about testing rates of one of the most affected groups in our community today.

Some in the LGBT community have been expressing concern about increases in new diagnoses for years now. In 2010 it was reported in that there was a ‘startling rise’ in new diagnoses, a ‘dramatic increase’ of 13% from 2009. Despite the ongoing concern at the steady increase since then, we have not seen a corresponding increase in available services until this year.

The bottom line is that there is no evidence to support the claim that the increase in HIV diagnoses is due to a corresponding increase in testing rates among gay and bisexual men.

• What do we know about the epidemiology of HIV in Ireland today?

No one knows what the HIV incidence and prevalence rates are in Ireland. Incidence refers to how many people contract a disease each year, prevalence refers to how many people are living with that disease at a given time. Ireland lacks these basic epidemiological data because the surveillance necessary to calculate them is not carried out.

It is inappropriate and misleading to refer to ‘prevalence’ and ‘incidence’ in Ireland because we don’t have the necessary information to do so. Instead, we can talk only about ‘new diagnoses’ and must speculate as to what those diagnoses might mean about the actual rate of new transmissions. Because the data available in Ireland is so limited, it is simply not possible to make accurate claims about things like the relationship between testing rates and new infections.

While we lack any reliable estimates of incidence or prevalence in Ireland, we do have some basis to be concerned. A measure that is sometimes used as a proxy for trends in HIV transmission rates is diagnoses of early infectious syphilis, which correlates to a relatively recent transmission. Syphilis is itself associated with an elevated risk of acquiring HIV, but diagnosis rates may also provide an indication about current rates of those sexual activities and circumstances which are associated with HIV transmission.

Syphilis diagnoses among gay and bisexual men in Ireland increased 50% between 2014 and 2015. This suggests that the number of recent transmissions of HIV may not yet be reflected in diagnosis rates, although, again, we lack sufficient surveillance information to know that for certain.

• What can we do?

1. Commit appropriate resources to increase the availability of HIV and STI testing.

• Government must commit to permanently funding the Know Now rapid testing project. The project should remain a community-organised and managed resource.
• Government should increase resources for the GMHS and other STI/GUM clinics, both in Dublin and elsewhere in Ireland.

2. Enable increased epidemiological surveillance.

Government should provide the necessary funding to enable HSPC to conduct the epidemiological surveillance and behavioural research necessary for us to have an accurate picture of the epidemic. Good surveillance should be linked to tailored prevention efforts that respond to the specific nature of the epidemic in Ireland.

3. Approve pre-exposure prophylaxis (PrEP) for those who need it.

Government should make PrEP accessible to anyone at significant risk of acquiring HIV. Ability to pay should not be a barrier to access for this crucial HIV prevention resource.

ACT UP on drugs… policy

In September of this year the Department of Health announced a public consultation as part of the development of a new national drugs strategy.

In our submission we urged the Department of Health to commit to policies based on harm reduction principles and focused on the welfare, health, and human rights of people who use drugs. We noted the many harms that punitive, prohibition-based approaches to drugs have caused and strongly opposed continuing the counterproductive application of the criminal law to what is, fundamentally a social and health issue.

If you would like to read our submission to the public consultation in full you can download a pdf here.