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Dublin: 15 °C Sunday 19 May, 2013

Column: ‘There are 1800 people in Ireland who may have HIV but don’t know it’

On Irish AIDS Day, Pam McHugh says people should ask themselves if they know their HIV status – and if not, why not.

Pam McHugh

Pam McHugh, Chair of the Dóchas HIV and Aids Working Group, says that with the right commitment and the right approach to sexual health we can live in a HIV-free world.

As much as 30 per cent of people living with HIV in Europe may not know they have the disease.

Today, around 6,000 people in Ireland are living with HIV and, as we mark Irish AIDS Day, it is worth thinking about the 1800 people in Ireland who may also be living with HIV but do not know it.

But how can someone get the treatment they need and prevent passing on the virus if they do not know they are HIV positive themselves?

Around the world, governments and NGOs are focusing on prevention as the key to tackling the disease. The focus of this year’s Irish AIDS Day is the promotion of HIV testing and the benefits of knowing your health status. Evidence shows that testing for HIV is one of the best means of prevention, and regular testing can assist in reducing the spread of HIV from one person to another as people adopt safer sexual behaviours.

We’re fortunate in Ireland that no-one who is HIV positive needs to go untreated. But this is not the case in many of the countries in which Irish development NGOs work.

’34 million people in the developing world are living with HIV- 80 per cent of those are undiagnosed’

Unfortunately, the global inequalities that exist around the world mean that poor people living in developing countries bear a greater burden when it comes to living with HIV. Currently, 34 million people in the developing world are living with the disease, but as much as 80 per cent of those are undiagnosed. There are a few key reasons for this.

Global poverty means that people in developing countries do not have the same level of access to quality healthcare than we do. In Ireland, these services are readily available, testing is free, confidential and easy to access, with many health centres and GPs providing testing and counselling. But governments in developing countries do not have the funding and families do not have the income to pay for the treatment needed to bring the disease under control.

‘We have our share of stigma in this country’

Another reason is stigma and discrimination. It’s true we have our share of stigma in this country, but it is not as keenly felt as in developing countries.

Rooted in fear, ignorance and misinformation, stigma discourages people from getting tested because they fear knowing, fear how it may change their lives and fear and how they may be treated by their communities if they find that they are HIV positive. But stigma can be combated by information, education and greater openness about the realities of the disease. HIV and AIDS campaigner, Fr Michael Kelly, recently commented, “HIV and AIDS do not stigmatise – people do. It is an assault on human dignity and worth.”

‘Getting a positive diagnosis is devastating, but it does not have to be a death sentence’

Irish NGOs working around the world on these issues come together through Dóchas, the Irish Association of Development NGOs, to push forward the progress being made. Working in this field, and as chairperson of an NGO group focusing on HIV and AIDS, I know how devastating a positive diagnosis can be for people in rich and poor countries alike, but it does not have to be a death sentence.

Early diagnosis is the key to a long and healthy life living with HIV so people should look to their own future and learn their status if they think they might have been exposed to the virus.

Due to the work of government aid donors, development NGOs and most importantly, people and governments of developing countries themselves, HIV services in many low-income countries are improving, access to prevention education and testing and treatment are becoming more readily available.  Another important part of these successes is leadership and investment at global, national and local levels to fight against HIV and AIDS.

‘Testing for the disease is the best form of prevention’

HIV is a preventable disease and testing is one of the best forms of preventing the spread of HIV –knowing your own status can ensure that others do not become infected.  In other words, if everyone knows their HIV status and those with HIV continue to prevent the spread of the virus, HIV can be eliminated altogether.  With the right commitment and the right approach to sexual health we can live in a HIV-free world.

On Irish AIDS Day, consider the 34 million people living with HIV around the world and the 80 per cent who do not know their status.

Now ask yourself if you should know yours. If you can’t tell whether someone else is living with HIV, perhaps you also can’t be sure you are not. Why not get tested?

Pam McHugh is Chair of the Dóchas HIV & Aids Working Group. Dóchas is the Irish association of development NGOs representing 49 NGOs working in Ireland and around the world to eliminate poverty.

For more information on AIDS awareness click here>

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Comments (27 Comments)

  • “There are 1800 people in Ireland who may have HIV but don’t know it”

    Surely that should read “There may be 1800 people in Ireland who have HIV but don’t know it”

    “Fr Michael Kelly, recently commented, “HIV and AIDS do not stigmatise – people do”

    Fr Michael has done an amazing amount of work in the HIV/AIDS arena.

    I would have thought that it would save the government money in the long run, were everyone entitled to a free health screening every year or every other year. Which would include screening for HIV/AIDS

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  • Winston 15/06/12 #

    Where dies the 1800 figure come from? Seems a bit high at a third of those already diagnosed.

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  • 1800 how did they come up with that figure? They may aswell say 10000 who knows?. Anna you are on a mission on this subject.

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  • Bryan 15/06/12 #

    That’s very high, in England they have a campaign called ‘know your status’ which from these figures looks like we need something similar here.

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  • Interesting perspective, Anna.

    Can’t say I agree with you on everything but lots of food for thought!

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  • People do not ‘want to learn to rap it up’ – utter stupid comment. There is a huge power imbalance for many people in negotiating sexual behaviour in relationships ….unspoken social contracts that prevent this . But if you really read up you will see phrases that pop up repeatedly – such as ‘Co – Factors’. It is not necessary to be HIV Positive to develop all of the symptoms of AIDS. Many Doctors have protested this based on hands on work with patients who develop many AIDS defining conditions but test ‘nagative’. Many people who are diagnosed as ‘HIV Positive’ do not transmit anything to life long partners in spite of having natural un protected sex lives. Many studies on this . Condoms do not protect against Herpes or some other genitally transmitted infections. New technology testing for antibodies associated with HIV are so sensitive and specific that while they may find trace of HIV RNA and DNA , these traces are no more infectious or active than your average fossil – read up on the Berlin Patient and the scientific discussion of the testing used to establish whether or not he has had it eradicated . They are activated under artificial lab conditions that have no relevance to Human Biologic activity. Something to read up on . Seed from plant frozen in Arctic terrains were under lab conditions stimulated to produce new plant life by various techniques. Some medications to treat HIV , like protease inhibitors , closely resemble , in their mechanisms , chemicals used to stimulate plants , and in fact were developed to do so in parallel. Very interesting to peruse that avenue of research and thought. I would also question and examine closely the discourse of vaccines – to understand better what you are allowing yourself to be tested for and medicated for.

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  • Check out Irish Aids Day new website http://www.irishaidsday.com plus wear red ribbon, some of our volunteers are on the streets of Dublin raising money for The Guide Clinic James Hospital
    See you all in town later with our ribbons and buckets

    Team @irishaidsday

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  • Some years ago an AIDS agency in Ireland tried to do a small campaign . Their Support Services Co Ordinator developed a poster and a statement at the time and said ” We are all HIV Positive” . It was a very astute and accurate comment on her part and one people are not educated properly to understand in it s full meaning and context. If you use very cyto toxic drugs regularly illicitly or legally , if you have multiple sexual partners and practise anal sex, unprotected – and/or if you are acutely malnourished due to the first or due to poverty , you will potentially develop AIDS – a syndrome. AIDS the syndrome was seen in children who were acutely malnourished in WWII- their lab works had all same characteristics . In developing this syndrome you may test HIV Positive under certain circumstances . You might need treatment and your illness could be life threatening . But a great many people who test HIV Positive remain well and controversially – non infectious for reasons not well understood yet. There was recently a report on the trial of a Vaccine to prevent AIDS something some researchers feel is very unrealistic and motivated by ulterior aims. In the Trial , subjects given the vaccine , went on to test HIV Positive . They had a biologic reaction to what they ingested – and became HIV Positive. It is not understood fully yet. This entire science is in its enfancy with a roll out of nouveau technology that is in many ways crude . When it is delivered , as with Cancer Industry , with a disclaimer , that there is ” no cure ” and no other treatment other than what the State has procured in contracts with a commercial for profit Pharmaceutical Industry – one should feel ever so slightly suspicious or at lease on ones guard. i say that as someone living with the classification for 15 years and more than a little disgusted at some aspects of this Industry. But far be it for me to speak openly. People are being co opted into a diagnosis that may be very inaccurate and false. Fact. I find it almost immoral that commercial industry can tell the public and instruct servants of the public – government and state bodies , largely voluntary and amateur or semi professional , that my health is to be defined by such narrow parameters of context as is done with HIV. And also Cancer. And MS. And many many other conditions now showering the public discourse – Mental Health , Diabetes , Asthma. I find more and more that when I look for answers – they are in the food chain and in toxins. We should really see our bodies as little micro cosms of the planet – eco systems , our personal temple. And as such organic . There are many many other ways to define ‘HIV Positive ‘ and perhaps Indian homeopaths are the most progressive and enlightened – moving far away from the clinical bio medical model . I would not rule out taking a HIV test but take a second privately , and look at other discourse on Immune Function and Inflammatory conditions before committing to a life time of anti retro viral drugs.

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  • I am HIV Positive. I have many friends who are also – actually I have several who are married in loving relationships who practice safe sex without condoms and their partners remain negative . Under the Swiss Statement Agreement – it was conservatively agreed that people who had no or low Viral Load did not ‘infect’ anyone. But if you are taking a lot of particular drugs and having sex that causes you ripping tearing anally – you may develop an AIDS syndrome. With some tests if you have TB you may test antibody positive on HIV tests. I am saying – expand the discourse and stop treating everyone as if they are one herd. They are not. Mainly I protest it as I want to see treatment options opened up to include safer cheaper less traumatic options for people like me and my many many contacts in the AIDS landscape . They are in other parts of the World . There are other potential treatments for immune deficiencies when they are diagnosed under different criteria and they are successful . Under the main AIDS banner all people are treated with one system toxic chemical therapy.

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  • Are you saying people that have aids or are HIV positive shouldn’t use protection? Because if you are you should be made have unprotected sex with someone that is infected.

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    • “…you should be made have unprotected sex with someone that is infected.”

      So, because someone voices an opinion that you are in disagreement with, you would sanction them to be raped? Nice…

      I don’t agree with a lot of what Anna has voiced here. I think she is treading a fine line between skepticism of the medical and scientific establishment and HIV/AIDS denialism. While she is absolutely correct that HIV/AIDS is big business and makes a lot of profit for not just for the pharmaceutical industry but also for political action groups and lobby groups (I have seen this first hand having attended the IAS conference in Rome last year), there is no denying that ARV’s are effective and have saved many lives.

      And on the point about having unprotected sex with someone living with HIV — read up on the Swiss statement. The chance of transmission of HIV between discordant couples when the HIV+ partner is on ARV treatment and has an undetectable viral load is negligible. That’s not to say that protection shouldn’t be used, but many discordant couples in committed relationships often choose to forgo condoms, and it is now generally acknowledged by the scientific and medical community as being minimally risky for them to do so.

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  • Elena – I do not see where exactly I have ‘denied’ that ARVs are effective and have saved lives…? That was not my point .

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  • I have attended AIDS conferences also – they are many and diverse . HIV/AIDS Denialism is a very convoluted term, Elena. Its a little presumptious to assume that my separating AIDS discourse from HIV tracing research is “Denialism”. I have been reading the subject for over 15 years in depth.But it is probably the easiest cliche to grab in a very narrow discourse on Immune Function and Dysfunction. One does not ‘deny’ the existence of a syndrome , a collection of symptoms called now AIDS. Kremers book on The Secret War on Cancer and AIDS is a good if poorly translated read as an introduction. You have missed my points. But thank you for pulling up Diegos comment on sex with someone with HIV/AIDS. His comment could only be borne out of the flawed awareness campaigns that proliferate .

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  • People want to learn how to rap it up!

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  • Do not take a test for HIV without first reading up on the technology in great detail – something people rarely do. Then be sure you are having a test with technology you are confident in – as it is irreversible . Understand what an irreversible diagnosis of this classification means in the context of a label ‘HIV Positive’ . In order to achieve that – you must read independently and also listen observe and ask for the official information and read first. Ask for guidance and proper professional discussion of what it means in terms of partners, family and future relationships , yes, but also , if you have a modicum of intelligence – read about the actual health research on this – not the statistic s and political chat – but the scientific research , and also the criticism of aspects of it . Be very sure you understand it as with Cancer or Arthritis MS or other diseases that have been largely painted in very one dimensional light in terms of treatment options , and diagnosis. Take the information the State gives you and go away and get additional info , work hard at that , and then make a decision about taking a HIV test. Consider other tests if you are ill also , don’t be co opted into a test or diagnosis with one test – Get a second opinion . Don’t let your health and diagnosis of it be over shadowed by a very huge political health agenda as AIDS is . I am surprised always when I read comments at how little time people devote to reading up.This figure is a complete numbers fairy tale. It has been so since the very beginning with continual revisions and patronisations of the general public . But it will keep a lot of people in business and in safe pensionable mediocre careers.

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  • You are also signing yourself up to a diagnosis that carries with it a very legal criminal risk. Understand this – in fact this should be the second pillar of HIV Discourse in Ireland today – beyond only testing. People are at the moment being jailed in Ireland perceived as having putting others at risk when they have not done so. But given the great struggle to actually define ‘transmission risk’ and produce real evidence , individuals are being stigmatised , ostracised and in some cases criminalised. Understand fully what you are undertaking in accepting a diagnosis of life long ”HIV Positive’. Question it and ask is it an infallible , moral and ethical construct based on the sciences we are seduced with ….. I don t think so . A controversial opinion , not to be mistaken for irresponsible . Irish people are intelligent and critical thinking is healthy. It does not seem to happen in AIDS discourse here – perhaps because it is assumed that all HIV Positive people are – uneducated , stupid , reckless, deviant, and must hold sole responsibility for this paradigm.. for the ‘greater good’.

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  • They save lives up to a point precisely because they are not solely designed with a virus in mind . ARVS are many and different – as some are now being trialed in MS treatment also and Industry is looking at cross applications of some stables of drug therapies they are not specific to ‘HIV’. They may be replacing old TB meds in places in Africa where TB is resistant to antibiotics but as a long term life long option – RULING OUT other less toxic options wholesale is in my mind immoral. Exerting a monopoly over provision also. I am saying EXPAND the discourse AWAY from a very narrow ONE SIZE FITS ALL rhetoric designed to herd people into one medical model. That will deal with many issues of discrimination , stigma, unsuitable medicines and flimsy treatment protocols – where they don’t work and are failing. Overseas in some trials – people are being treated without toxic ARVS . But we are being co opted into a life time of Arvs here . I have met and spoken to , attended presentations in mainstream AIDS conference where there have been presentations of these and they are as successful as the protocols here. But God Forbid someone who took the initiative to go and find out these things ever speak in Ireland about it . Don’t dare accuse me of being anything so trite and silly as “an HIV/AIDS Denialist”. Such a stupid and absurd label almost as absurd and stupid as accepting being labelled HIV Positive and HIV Negative. Do we also now have CANCER Positive and CANCER Negative…? Will heavy smokers now be labelled as infectious and locked up if their significant other develops lung cancer..? I am playing Devils Advocate here a little.. Sexually transmitted AIDS is not the single biggest threat to mankind – Poverty is the single biggest threat to people – food poverty , land poverty , water poverty and poverty of natural resources . Before taking a HIV test – do some reading . Look also at other aspects of your life and health care. And do read about technology that you are going to subject your self to when it is going to give you an irreversible diagnosis of an incurable medical condition. Also where you can afford it , look at other kinds of tests and treatments for quality of life. The world does not own your health or your potential diagnosis as long as you pose no harm to other people. BBC Breakfast news aired a news item on HIV / AIDS and breastfeeding this morning supporting breastfeeding as an immune measure that far outweighs the risk of disease. Bravo to them. If certain factions of HIV sector had their way there would be a sanction imposed on this in poverty stricken communities also, and mothers who should have ‘suspected’ their HIV or their AIDS status could be subjected to imprisonment removal of custody of their child and break down of their family unit . But not for TB Malaria or Flu.

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  • No…. I feel it very close to my heart . I am not a trouble maker . I know my subject well.

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  • No Diego ….sigh …that is not what I am saying .

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  • Hmmm well it would be nice to know who gave thumbs down to the comment and if they have an actual comment to respond with instead of ticking boxes anonymously.

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  • When you stop correlating HIV with sex and look at other factors you might live in a ” HIV free ” world. Or you wont -because when the real scientist s have their day – funding / politics / agendas permitting- you will probably wake up to a head line one day that ‘HIV’ is a part of our innate immune system and not solely the result of a zoonotic event between two species in 21st century.Technology identified it only recently. However if we listen to the discourse on live / vaccines and read up a little on ingredients in vaccines , I suspect, we might find a culprit or two for – Asthma, Auto Immune diseases , Cancer, and even AIDS. We may expand the ‘turf’ warfare that is AIDS to allow for discussion of other means of transmission of ‘events’ that stimulate the biologic activity with one by product – HIV . HIV is not just about Safe Sex – and would you media ‘information’ feeds stop continually presenting this discourse in such narrow terms. It is so much more than that and it is an insult to many many people to be co opted into this singular narrative as the only means of discourse on this issue. AIDS is about POVERTY and Populations – curbing their sex lives seems to be one crude measure to alleviate it rather than feeding people and making them self sufficient. Strangely in many projects in developing nations where people received adequate nutrition they had a reversal of their condition. In some very progressive studies protein malnourishment was seen to be a key factor in causing many conditions known as OI’s and seen with AIDS. They are also seen post chemo drug therapy and many of the OIs identified now as limited to AIDS patients are no such thing and did not even appear in the HIV roll call of dis – ease until the advent of many HIV chemo toxic medications . Severe Heroin cases have presented to CHILDREN as the face of a HIV virus, sent on talks to schools frightening them into submission to a very stupid narrow dishonest discourse. Gay men who have GRID – Gay Related Immune Deficiency , a real and specific condition within sectors of the Gay community – are speaking to children in Primary School about AIDS as if their diagnosis is the same immune deficiency as AIDS by malnutrition. All to be lumped in as one ‘behavioural’ group when this is a complete and utter fabrication. Third World casualties are asked to do their bit and preach the same rhetoric when they have buried entire families due to POVERTY and disease s like TB – the NO 1 AIDS defining illness in Africa. Our children are not at risk for this . They may grow up to do overseas volunteering as a result but a whole group of people with very different conditions will be treated as one and the same when they are not. Oh my gay friends told me to say that BTW as did some of my African friends – diagnosed as HIV Positive. We are tired of having all our health treated the same under the banner of Incurable Infectious AIDS.

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  • This is an article by someone who works in the field of “HIV prevention” http://www.washingtonblade.com/2010/07/29/routine-hiv-testing-is-a-flawed-strategy/

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  • http://www.sciencedaily.com/releases/2012/06/120614182751.htm This is a mainstream article. It would be to ‘Denialist’ material to some individuals. It is Science and it is continually evolving. This was todays news on BBC Breakfast and elsewhere. Many activists and advocates have known and supported the findings of this study for well nigh two decades. Even so women have been arrested , prosecuted and had their children taken into State care over this issue – Breast feeding. They have had their family unit torn asunder over a flimsy social policy with no real basis in either science or in best practice across a population. In light of it , it is easy to see why people may be reluctant to submit to a piece of technology that claims to be infallible . Perhaps if there was a little more flexibility and less authoritarian attitude to The Public – The Great Unwashed …as we are viewed it would seem by some academics and policy makers, there might be more uptake on new and novel forms of ‘screening’ of human populations. Eventually it will probably end up being mandatory- ?

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  • My married friend s in loving relationships include gay couples and straight …btw. Don’t read my comments as anti any group. Diego you have an out dated knee jerk understanding of HIV. Between two consenting Adults ( but not too often and not too many different partners…. not good for the mental health or real intimacy or love..) where they are ‘sero – discordant’ ie : one is classified as HIV negative and one is classified as HIV Positive – in the absence of any other infections and symptoms , if their viral load is suppressed ( current scientific guideline) meaning not present in body fluids, it is ‘safe’ to have sex . I have many friends with children who are HIV negative. As I said the science is poorly hung together and c’est ca. Do read The Swiss Statement . I do not advocate that anyone diagnosed classified as HIV Positive hide this fact in a relationship where they are sexually intimate. But if you are in a relationship where you might be subjected to violence – you may need to weigh that up also before taking a HIV test . I don’t think that these news articles should be allowed to go to print without giving all that advice also and a range of addresses and phone numbers because with ill conceived attitudes abundantly evident – they may become a casualty in more ways than one.

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  • Well I think the tone of this article is patronising to the Irish Public. To ask why people do not know their HIV status as a kind of challenge to their integrity and intelligence is very misguided. There are huge rafts of text produced by people in research and policy that do not support this position – that all people should take a HIV test : ie Universal Testing.Going by the thinking in the consensus view the evidence on ease of transmission even by the most conservative of current data does not support doing so. The consensus that co-factors play a larger role also supports a more targeted testing strategy and not Universal Testing as this article implies. Stigma is not as bad here as in other countries….? Where did the author get this impression from ? Has she interviewed and observed the lives of people who are diagnosed / classified as HIV Positive in Ireland directly? How many people in Ireland are open about their status aside from people working in the Industry groomed and supported by it ..? They may be braver than most but even with moral support from services to shield their careers and assist them along , there is still much hostility and a distorted idea of risk from physical contact. This is evident from some of the Court cases that are now making their way into the public news. While there may be no cure perhaps focusing so negatively on the concept of ‘cure’ is harmful also to people diagnosed with this – perhaps even – unethical. You cannot take Hope away from people in such a final way . There are many people who do not develop any illness , so the notion of needing to ‘cure’ them is redundant. There are many people who ‘co-habit’ with disease their entire lives and still have full functional lives. We talk now of functional cures , rather than the need to eradicate. The presence of antibodies or proteins does not necessarily translate to active infectious disease – All these facts would lead one to question the official line on this – that there is No Cure , that without ARVs you will die , and that at all times people classified as HIV Positive are contagious / infectious and going to die [ and therefore everyone needs to test for HIV ]. It is a false economy , this position. You put a burden like that on Laboratories and you are going to have errors. Sorry , but I know many health prevention professionals who would agree in the USA and UK. Don’t take a HIV test until you are fully sure you understand the implications and have exhausted other avenues of investigation for your health issues. Don’t do it if you don’t feel you have some risk criteria and help campaign for Universal Understanding of the issues in HIV and Criminalisation here on our soil. When you are sure your rights are going to be upheld and protected in the very very confusing arena of transmission than take every HIV test kit on the market and compare notes.You test four million people for HIV twice and other much more urgent disease profiles will be made to wait for laboratory facility. So it seems a little greedy of the HIV Industry voluntary and NGO sector to make this call. This is a very poorly thought out campaign and really what is at the heart of it is – have they got it wrong? If we test everyone outside of ‘risk groups’ will we know once and for all if our theory of infection is right or not. Do people know anything about the Industry revisions that have been made in the technology and the criteria with what is tested these day s…? What would they think if they investigated , had the time to do so – read reviews and comment on that issue . Tests are not standardised across countries and use very differing criteria . Now there is an attempt to standardise them and create a Universal code of infection – but is it right?

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