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.

ACT UP Dublin at the Department of Health

This morning members of ACT UP Dublin gathered at the offices of the Department of Health in Hawkins House with a giant alarm clock to wake the public to Ireland’s HIV crisis. We want to rouse government, community stakeholders, and the public at large into action to address the ongoing epidemic.

This World AIDS Day we are changing the conversation, and drawing attention to the political dimensions of the epidemic. New HIV diagnoses are at an all-time high in Ireland and the government response is falling short.

We in the community are ready for new prevention options like PrEP. Further delay on PrEP will result in avoidable new transmissions. It’s time for all of us to break the silence and demand an effective response.

Our press release can be downloaded as a pdf here. The full text follows a few pics we took…

act_up-hawkins_house-161130a-crop  act_up-hawkins_house-161130e-cropact_up-hawkins_house-161130b-crop

FOR IMMEDIATE RELEASE

Contact:    act.up.dublin@gmail.com
www.actupdublin.com

WORLD AIDS DAY 2016: IRISH GOVERNMENT MUST DO MORE TO COMBAT THE EPIDEMIC

NOVEMBER 30, 10:00am , Hawkins House

On the eve of World AIDS Day, ACT UP Dublin is sounding an alarm to government, community stakeholders, and the public: Ireland is in the midst of an HIV crisis.

This morning in front of the Department of Health Offices at Hawkins House, ACT UP is installing an alarm clock to wake Ireland’s dormant institutions to the need for a renewed effort to address the expanding epidemic.

Thanks to advances in treatment and prevention, government has powerful new ways to reduce new HIV transmissions.  ACT UP calls on authorities to do more than offer words.  Government should devote greater resources, and take effective actions, to address the epidemic.

FACTS:

– In 2015, Ireland recorded the highest number of new HIV diagnoses ever in the history of the epidemic.  Gay and bisexual men are particularly affected, now constituting over half of new diagnoses. Even accounting for those previously diagnosed elsewhere, new diagnoses in the LGBT community have been increasing for over a decade.

– More people in Ireland are living with HIV than ever before.  Yet government and community organisations are not doing enough to meet our ongoing needs.

– Ireland’s public spending on HIV prevention is inadequate and lags behind peer countries.

– Government delay in making Pre-Exposure Prophylaxis (PrEP) available will result in entirely avoidable HIV infections.

– Government must adopt a comprehensive and coordinated HIV strategy that links clinical and community efforts to halt transmission of HIV and to care for those with the disease.

– Government should permanently fund community-based HIV rapid testing (Know Now) and increase funding for our overburdened existing sexual health services.

– Government should bring health surveillance efforts up to par with peer countries.

What is ACT UP?

ACT UP Dublin is a local chapter of ACT UP, The AIDS Coalition to Unleash Power, an international HIV activist organisation. ACT UP Dublin was founded in July 2016 to take action on Ireland’s HIV crisis. We seek a more urgent and effective response to HIV from government authorities, community organisations, and the public at large.

-ends-

Press Release-Community forum on PrEP

You can download a pdf of the press release for our upcoming community forum on PrEP here:
ACT UP PrEP forum press release

The full text of the release also appears below.

The Facebook event page can be found here.

PRESS RELEASE
FOR IMMEDIATE RELEASE

Contact: act.up.dublin@gmail.com

COMMUNITY FORUM ON HIV PREVENTION & PRE-EXPOSURE PROPHYLAXIS (PrEP)

NOVEMBER 10, 7PM, COBBLESTONE (SMITHFIELD)

ACT UP Dublin will present a community forum about pre-exposure prophylaxis for HIV—more commonly known as PrEP—this Thursday, November 10 at 7PM. The forum is intended to spark community discussion about HIV prevention and to encourage community involvement in Ireland’s HIV crisis. More people were diagnosed with HIV in Ireland in 2015 than ever before.

The event will feature short informational talks about PrEP, followed by a substantial period of questions and commentary from members of affected communities. Dr. Paddy Mallon, from the HIV Molecular Research Group (UCD), will speak on medical and scientific aspects of PrEP, including future research that will be conducted in Ireland.

The discussion will be moderated by Dónal Mullligan, lecturer in the School of Communications at DCU.

What is PrEP?
PrEP is a safe and highly effective way for people who are HIV-negative to prevent HIV by taking a single daily pill. The pill, with the brand name Truvada, has been approved for use in HIV prevention in eight countries around the world. It received marketing authorisation from the European Medicines Agency in August.

When used as directed, PrEP provides nearly complete protection from HIV. The World Health Organization, the US Centers for Disease Control, and UNAIDS all recommend that PrEP should be available to people at substantial risk for HIV.

Irish authorities, under the aegis of the National Sexual Health Strategy (2015), are currently assessing whether, when, and how to make PrEP accessible in Ireland.

What is ACT UP?
ACT UP Dublin is a local chapter of ACT UP, The AIDS Coalition to Unleash Power, an international HIV activist organisation. ACT UP Dublin was founded in July 2016 to take action on Ireland’s HIV crisis. We seek a more urgent and effective response to HIV from government authorities and community organisations.

-ends-

PrEP in the Wild

PrEP is only approved and widely available in a few countries around the world, but people are finding ways to access it on their own. The “PrEP in the Wild” survey is trying to learn more about people’s experiences around the world. The survey is still open, but some preliminary results were presented at the HIV Research for Prevention conference in Chicago earlier this week. Aidsmap has a report:

An increasing number of gay men and others at risk of HIV are seeking to protect their health with PrEP (pre-exposure prophylaxis), but the lack of PrEP provision and lack of regulatory approval in many countries is leading people to take PrEP without medical supervision and on an ad-hoc basis. This will undermine the safety and effectiveness of PrEP, Jerome Galea said as he presented results of the PrEP in the Wild survey to the HIV Research for Prevention (HIVR4P 2016) conference in Chicago yesterday.

“The official authorities are playing catch up and failing in their duty to protect public health,” commented the authors of a separate report on PrEP Access in Europe.

Have you used PrEP ‘in the wild’? We’d love to hear from you! If you’d be willing to share your story please get in touch with us.

You can reach us with a message to our Facebook page, or by email at act.up.dublin@gmail.com. We’ll keep your details private and will not make any identifying information public.

Community forum on PrEP

We’re excited to be hosting “PrEP: the pill that can prevent HIV”, a community forum about pre-exposure prophylaxis for HIV (PrEP) on Thursday, November 10th, at the Cobblestone in Smithfield. The event will run from 7 to 9pm, with doors opening at 6:30. The event is free and open to anyone who is interested in learning more about PrEP.

The evening will begin with brief presentations on PrEP, followed by an open discussion. Attendees can ask questions and learn more about how PrEP works, what the obstacles to getting access here are, and how they can get involved in making it available in Ireland.

We’re very fortunate to have Dr. Paddy Mallon to present on the science behind PrEP and to talk about the medical aspects of this new HIV prevention method. As well as being a consultant working in HIV care, Dr. Mallon is head of the internationally-recognised HIV Molecular Research Group at UCD. His research has covered a range of HIV-related areas including long-term effects of antiretroviral treatment and expanding access to HIV testing.

We’ll be posting additional information over the next few weeks here and on the Facebook event page. We encourage people to submit questions or let us know about specific issues that they’d like to know more about either through our Facebook page or by email at act.up.dublin@gmail.com.

prep-community-forum-fb-event-photo-a

Next meeting this Tuesday, October 4th

Our next regular meeting will be this coming Tuesday, October 4th. Usual time and place: 6:30pm in HIV Ireland’s offices at 70 Eccles Street, Dublin 7 (across the street from the Mater Private hospital).

We’ve got several projects underway that we’d love help with, and are always open to new ideas and proposals. Come on down and join us!

Next General Meeting Aug 16

Our next general meeting will be Tuesday, August 16th. We’ll meet at the usual time and place: 6:30pm at the offices of HIV Ireland at 70 Eccles St., Dublin 7 (across the street from the Mater Private Hospital).

We will be discussing specific actions we want to pursue in the coming weeks and months. Bring your ideas and energy!

As always, this meeting is open to all. Please feel free to share our event page on Facebook.