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Opinion 'People with HIV in Ireland are dehumanised - we're seen as a virus'

But activist Robbie Lawlor sets out how people like him are breaking away from stigma and living full lives – and says people need to be more open and honest.

I HAVE HUNDREDS of friends who feel trapped within the same secret. This secret typically affects no one but themselves.

But everyone’s secret is both intensely personal and united by the same shared legacy. A legacy of death, fear and ignorance…

A fear that is no longer founded.

These hundreds of friends of mine are living with HIV and they often confide in me that they feel trapped within their secrecy. Their secrecy is borne of an epidemic that we haven’t yet grieved, an epidemic we have found easier to forget than to contend with…

As of 2017, an estimated 7,205 people are living with HIV in Ireland. Thousands of us live here, yet I can count on my two hands the number of people who are willing to be open about their status. All of these people are white gay men.

Why do we shame people?

This fact remains despite statistics showing that a quarter of new HIV diagnoses are in fact women. It’s 2019 and female representation within our community still seems an impossible ask. HIV rates have never been higher and we have one new HIV diagnosis every 18 hours in Ireland. So, what’s not computing?

We must ask ourselves, what sort of society do we live in that shames people living with a medical condition? Why in 2019 is this still the case?

I know from experience that people living with HIV can live rich and fulfilling lives. When we are on effective medicine, our immune systems can work as normal, we can live as long as everybody else – and it can even become impossible for us to transmit the disease.

I’m living with HIV since 2012, having been diagnosed with HIV at the age of 21.

I always thought I would be considered a ‘risk’ or ‘danger’ to any future sexual partner, with or without a condom. But thankfully, we have arrived in a time where the science is clear.

Having an undetectable viral load means the risk of transmission is zero. I’m in a relationship with my HIV negative partner for the past five years and we don’t need to use condoms at all.

Paradoxically, I am the safest person he can sleep with in terms of the risk of contracting HIV.

Undetectable means Untransmittable – but our lack of voice means this message has been evading the mainstream.

Not keeping a secret

In a trait that I developed from my mother, I found I couldn’t keep a secret so huge, so not telling everyone about the condition wasn’t an option for me.

The feeling of being open, not having to hide something that is a part of me is the most freeing experience. Why should anyone have to hide their pill boxes, or lie that they are going to see their HIV consultant?

But for a lot of people, it’s not that clean cut. The reason being, society dehumanises us.
To society, we are seen as a virus or a vector. Despite the fact that our condition is more manageable than ever.

HIV positive people can have children without any issues or risks, we can be sexual partners without any issues or risks, we can be a chef or hairdresser without any issues or risks. The real issue, and the real risk is inherent in Ireland’s total lack of provision of a sex education curriculum that is inclusive and comprehensive.

Our pervasive and collective shame around sex; in particular, on the subject of both gay sex and women enjoying healthy sex lives fuels this toxic dynamic of shame and silence even further.

Not to mention our government’s continued neglect of this country’s sexual health needs.

We need to change how we see people living with HIV. Imagine a world where we get everyone living with HIV to know their status. Imagine a world where people felt free to be open about their status and that they felt mentally ready to take their medication every day.

Imagine a world where we got everyone living with HIV to have an undetectable viral load. We would have zero new HIV infections and zero AIDS related deaths. We will only achieve this when we start to see people living with HIV as human beings and as a solution to Ireland’s rising HIV epidemic.

Rapids

As part of my ongoing activism and amplification of this politic, I have developed a theatre project that looks to amplify the voice of the HIV community in Ireland.

Rapids by Shaun Dunne and Talking Shop Ensemble is a powerful piece of documentary theatre that masterfully highlights the polemic I have so far addressed here.

It unpacks the lives of men and women living with HIV in Ireland – for the first time.

This contemporary work lifts the veil somewhat and allows audiences to hear and share in some of the experiences we hold in our secrecy. It takes hundreds of my friends out of the viral closet and into the spotlight. It’s helping their voices resonate where they still feel they cannot speak themselves.

My only hope as Rapids embarks on a national tour of Ireland is that its audiences, the readers of this article and wider society can keep on carrying that torch of truth and visibility.

After all, a torch is a more positive tool than a trap. I know which one I would rather.

Robbie Lawlor has been active within the HIV community since his diagnosis in 2012. He found his adjustment to living with HIV difficult due to the side effects of medication, and the fear of being ‘outed’. He was determined to turn his HIV story around and make a better life for himself and others living with the condition. He set up Ireland’s first one-on-one peer support network with the social work department in St James Hospital. 

Rapids is on tour nationwide through February and March, with dates at Mermaid Arts Centre, Bray (15 February), The Everyman, Cork (20 and 21 February), Droichead Arts Centre, Drogheda (28 February), Axis Ballymun (1 March), Town Hall Theatre, Galway (6 March) and the Belltable, Limerick (7 March).

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    Mute Larry Whack
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    Dec 24th 2021, 9:34 AM

    Fair play and thanks to those workers.

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    Mute LaoisWeather
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    Dec 24th 2021, 11:25 AM

    @Larry Whack: Fair play to them, but what is the point in all this testing? The purpose of testing is to identify and drive out onward spread. That is fine in a situation where numbers are manageable and there is no vaccine.
    We know that the virus is spreading uncontrollably in society and it is going to keep going because of the omicron variant which thankfully seems to be much milder.
    The only requirement for testing should be those: 1) working or living with someone vulnerable; 2) requiring international travel; and 3) requiring admission to hospital.
    Testing Damo because he was in Coppers and lobbed the gob on a few moths is a huge waste of resources and money. We don’t need to know whether there are 7k cases today or tomorrow. We know it’s out there and will keep going until it burns itself out.

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    Mute Lee King Buckett
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    Dec 24th 2021, 11:32 AM

    @LaoisWeather: So ‘Damo’ doesn’t interact, live with, meet or visit anybody in categories 1,2 or 3 then?

    You need to put a bit more thought into that position I’d say.

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    Mute Alan Kennedy
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    Dec 24th 2021, 11:39 AM

    @LaoisWeather: Agreed, the indiscriminate use of PCR tests is an ongoing waste of money and time. Also, does anyone know how many amplification cycles they are running these tests at. Is it still 40 to 45 in Ireland?

    25
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    Mute Pat ALTHEA
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    Dec 24th 2021, 11:50 AM

    @LaoisWeather: the point in testing is so people can be responsible in society. If you knowingly have covid and spread it within the community how many people do you think could end up quite sick from it?

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    Mute Niall Ó Cofaigh
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    Dec 24th 2021, 11:54 AM

    @Alan Kennedy: the HSE have published their PCR amplification policy.and where a retest is needed and when a resampling is needed. Link been published here a few times, have not got it to hand but s Google search may help there

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    Mute Niall Ó Cofaigh
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    Dec 24th 2021, 12:01 PM

    @Pat ALTHEA: it also help those vulnerable people, who many says must take responsibility themselves, to know and understand the risk they take. The fewer the cases the lower the risk. Plus we must never lose sight of the fact that about 7 people a day are dying coupled with the strain on the health services. This is why testing and reporting is important, not to mention the fact that positive cases should be isolating at home or in City West.

    28
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    Mute LaoisWeather
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    Dec 24th 2021, 12:14 PM

    @Lee King Buckett: Damo can take an antigen test if he’s visiting triple-jabbed granny over the Christmas following his well deserved night out on the tiles. Queuing for a PCR test in the general is a waste of time money and resources.

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    Mute Sean O'Doherty
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    Dec 24th 2021, 12:20 PM

    @LaoisWeather: It’s Mots, not moths.

    22
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    Mute Lee King Buckett
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    Dec 24th 2021, 12:21 PM

    @LaoisWeather: You only book a PCR test if you have symptoms in which case an antigen test is not sufficient.

    This has been repeated a million times and people still don’t get it.

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    Mute Kevin Thompson
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    Dec 24th 2021, 12:53 PM

    @LaoisWeather: what about if you work with someone who is living with someone vulnerable? What if most of the doctors and nurses get sick at the same time?.

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    Mute Toon Army
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    Dec 24th 2021, 1:11 PM

    @LaoisWeather: Exactly. Latest estimates are there are approx 30 infections for every case. Test and trace was never a viable strategy.

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    Mute Damo
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    Dec 24th 2021, 1:32 PM

    @LaoisWeather: I just named your ma as a very close contact…

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    Mute Irene Barr
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    Dec 24th 2021, 1:35 PM

    @Larry Whack: yes we should spare a thought for the people swabbing for the next two days. No one turning up for testing is going to have much Christmas spirit. Be kind!!!

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    Mute John Rowan
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    Dec 24th 2021, 2:56 PM

    @LaoisWeather: how do you know all the cases reported today don’t fall into the categories you mentioned?? I think you should stick to reporting the weather forecast and leave the medical matters to the experts.

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    Mute Damo
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    Dec 24th 2021, 3:34 PM

    @LaoisWeather: I was never in Coppers!!

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    Mute Sohoma Roanie
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    Dec 24th 2021, 9:42 AM

    I hope those workers get some serious overtime pay.

    346
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    Mute JG
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    Dec 24th 2021, 9:58 AM

    @Sohoma Roanie: they won’t.

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    Mute Patrick O Connell
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    Dec 24th 2021, 10:07 AM

    @JG: they will

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    Mute Hugh Mc Donnell
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    Dec 24th 2021, 11:04 AM

    @JG: treble time I’m told. I don’t begrudge them it one bit but there is an entire industry built around Covid-19 and alot of multi nationals making alot of money out of it. While the person in the street gets jabbed and stays safe there doesn’t seem to be any benefit actually as we’re back in a partial lockdown again. You can’t travel to easily and pcr tests are expensive and to be honest I think there is alot of price gouging now.

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    Mute Maria Hickey-Fagan
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    Dec 24th 2021, 9:53 AM

    Amazing sacrifice. Thank you.

    193
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    Mute Homes
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    Dec 24th 2021, 10:08 AM

    There is no need to have this operational on Christmas day. Give the people a break.

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    Mute In the paper
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    Dec 24th 2021, 10:25 AM

    @Homes: So are you saying that Covid won’t be active on Xmas day

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    Mute Kevin O'Brien
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    Dec 24th 2021, 10:31 AM

    @In the paper: It doesn’t become active until 8pm.

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    Mute Gerry from the Block
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    Dec 24th 2021, 10:49 AM

    @In the paper: “so are you saying that covid won’t be active on Xmas day”. Why? Why do people leave infantile comments like this incessantly on every journal article?

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    Mute In the paper
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    Dec 24th 2021, 11:02 AM

    @Gerry from the Block: Gerry… you need to read the comments and go back around the block before you comment

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    Mute Bad Bunny
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    Dec 24th 2021, 11:57 AM

    @Gerry from the Block: you’re dead right. I think it’s quite obvious what the op was referring to but some can’t help themselves.

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    Mute Niall Ó Cofaigh
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    Dec 24th 2021, 12:13 PM

    @Homes: so you want to deny the people who want to have a covid test from having one on Christmas day despite the sacrifice of those willing to give their time on Christmas day to facilitate this? Remember that people with symptoms are supposed to be isolating and am sure people isolating would like their negative results as soon as possible too.
    I add that there is even less a need any day to have pubs or restaurants or any hospitality industry open at all or indeed non essential shops or travel or… the list goes on. We are fighting a pandemic still and trying to balance disease control with allowing socialising with as low a risk as possible. PCR testing would not be necessary if we were all locked down in our homes for two weeks like they did in China.

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    Mute Niall Ó Cofaigh
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    Dec 24th 2021, 12:18 PM

    @Bad Bunny: I think the “covid not active Christmas day” was sarcasm – but I hope people isolating with symptoms today can get a PCR test tomorrow and a negative result in time to be freed from isolation for Stephen’s day thanks to the efforts of those involved

    19
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    Mute Mick Dunne
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    Dec 24th 2021, 10:18 AM

    Fair play to them Thank you all Involved

    76
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    Mute Finnster
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    Dec 24th 2021, 10:33 AM

    Huge sacrifice from those involved in carrying out testing over the Christmas period . Well done and thanks

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    Mute Heisen berg1
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    Dec 24th 2021, 10:19 AM

    Are people that desperate,can they not even take a day off from covert.

    67
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    Mute Lee King Buckett
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    Dec 24th 2021, 11:26 AM

    @Heisen berg1: But if they did then they would be recognised and risk blowing their cover and the whole operation.

    49
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    Mute Gavin Linden
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    Dec 24th 2021, 10:22 AM

    It would be more important to have the vaccine clinics open for those two days than the testing facilities.
    Again, incorrect priorities by the HSE.

    44
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    Mute Eoin Roche
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    Dec 24th 2021, 11:21 AM

    @Gavin Linden: Did you get a doctorate in virology and immunology in last year’s Christmas cracker? Evidently not, because you’re wrong there. Covid negative people, otherwise normal and healthy, taking the recommended precautions, are no worse off to wait a few days to get boosted. Its suspected cases that need to be diagnosed without delay so they can isolate and treat the symptoms.

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    Mute Gavin Linden
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    Dec 24th 2021, 11:33 AM

    @Eoin Roche: Nope…!

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    Mute Gavin Linden
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    Dec 24th 2021, 11:48 AM

    @Eoin Roche: I never realised that Doctorate levels of education were required to comment on a particular subject, but there you go…
    While not attempting to disagree with someone as qualified as yourself I would point out the following. Given that only 1 in 4 people are testing positive which is quite a low percentage it’s a high waste of resources to accommodate Mary and Johnny swamin in for testing for God knows what reason. Given the obvious level of covid throughout the country and the anticipated surge over the coming weeks, testing should actually be scaled back and used for very specific targeted groups of people.

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    Mute Jonathan O'Riordan
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    Dec 24th 2021, 5:51 PM

    @Gavin Linden: and how many otherwise well people will go get a vaccine those two days then instead of after their break

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    Mute pat seery
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    Dec 24th 2021, 11:06 AM

    It’s time All Front line Staff Got A Decent Pay Rise and HAPPY Christmas to Them All

    30
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    Mute Edward Reid
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    Dec 24th 2021, 11:25 AM

    We had positive antigen yesterday and had to drive over 60 miles to get a test. I know loads of people that just got tested in the past few days for extra peace of mind for the Christmas dinner and it will probably mean people that should really be using hse testing can’t get an appointment because if that, which will probably result in more spread because people will rely on antigen tests if they can’t get a pcr. 1 out of 3 antigens I done were negative.

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    Mute In the paper
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    Dec 24th 2021, 9:55 AM

    Damien will want to come into the real world …none available in Galaxy city since early YESTERDAY…

    13
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    Mute Cowboy Ted
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    Dec 24th 2021, 10:05 AM

    @In the paper:
    There is none in Connacht and Clare… is it a computer glitch?

    12
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    Mute Cowboy Ted
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    Dec 24th 2021, 10:08 AM

    @In the paper:
    There is none in Connacht and Clare… is it a computer glitch?
    Mind you we are testing 32,000 a day… last Feb we were inly doung 24,000…
    System under huge pressure…

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    Mute Patrick O Connell
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    Dec 24th 2021, 10:11 AM

    @In the paper: testing capacity is 250,000 a week and the variant is rampant

    9
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    Mute In the paper
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    Dec 24th 2021, 10:19 AM

    @Patrick O Connell: I am well aware of that….but the power’s to be tell us they have extra staff…and walk in centres …thats great until you need one

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    Mute Patrick O Connell
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    Dec 24th 2021, 10:23 AM

    @In the paper: and there is extra staff hired but they can only test so much, 12 months ago they only had capacity for 100,000 despite opposition parties stating the opposite. Credit must be given to the HSE for achieving the 250,000

    21
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    Mute Lee King Buckett
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    Dec 24th 2021, 11:29 AM

    @In the paper: Sounds like COVID is also spreading its tentacles throughout the universe.

    I hope that Star-Lord, Drax, Rocket Racoon and the rest stay safe.

    4
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    Mute John Sadlier
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    Dec 24th 2021, 10:38 AM

    Waiting two days for results so far

    10
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    Mute Niall Ó Cofaigh
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    Dec 24th 2021, 12:20 PM

    @John Sadlier: hope you get a negative today and in time to enjoy Christmas – merry Christmas

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    Mute Vlad Eire
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    Dec 24th 2021, 11:35 AM

    ridiculous. My wife is 36 weeks pregnant. Rotunda testing clinic is closed for Christmas and can’t get a test with hse.

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    Mute Derek Moean
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    Dec 24th 2021, 2:55 PM

    Wouldn’t be to bad if I could get a booking confirmation.

    5
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    Mute Mark Trudgeon
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    Dec 24th 2021, 6:19 PM

    Stop already, feeding the government machine like

    5
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    Mute Brian Blarnan
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    Dec 24th 2021, 9:44 PM

    Big Deal

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    Mute JohnDoe
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    Dec 24th 2021, 12:39 PM

    are they walk in PCR centres ?

    1
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