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New call for HIV at-home testing kits in the UK

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  1. I must admit I have very mixed feelings about this, and it has nothing to do with the issue being HIV – it is in connection with home testing.

    Home testing has been shown in other issues to have raised concerns in a number of areas and I can see no reason to suspect that it would not be similar (or possibly worse) with these kits.

    In a report by the consumer organisation Which? on six widely available home testing kits (eg cholestorol, cancer etc – NOT HIV). It found many problems with the tests, including gaps in information, difficulty of use, “baffling” language, the risk of false alarms or false reassurance and misleading naming.

    With HIV testing there is a strong reason for seeking good counselling in connection to testing, and a risk that home testing could increase anxiety amongst some people with elements of health related psychological conditions.

    That said, there is a possibility it could increase sexual health safety in the population.

    I can see benefits, but wonder if

    1. they will do more harm than good?

      1. Very well said, Stu! Agree entirely.

        1. Thanks. ;-)

  2. While early diagnosis followed by treatment and care is a major force in driving down the epidemic the world over, it doesn’t mean that this innovation will make HIV testing normal.

    There is a risk that we are falling for propaganda designed to do more to help Orasure Technologies, which developed the OraQuick test for HIV, and less to help those confronted with the prejudice associated with a positive diagnosis.

    I would be interested to know if the National AIDS Trust have funding from Orasure Technologies (I have tried to find out without success) and am hesitant in endorsing the NAT comments as I have a niggling doubt that NAT may be being bought by the technology company to endorse the product.

    Most HIV clinicians and counsellors would encourage increased testing, but done correctly, with support available – this surely can not be achieved at home?

    1. As Bisi Alimi, the HIV campaigner said about this “Unlike the FDA and other regulatory bodies in the world, I deal with human beings and not data. I deal with the everyday story of ordinary people. And it is their reality that tells me that HIV cannot be normalised and that home test kit are not the answer to the problem of late diagnosis.”

      1. Unfortunately HIV charities have a sordid history of climbing into bed with big business to maximise funding, even when there are clear conflicts of interest that have directly impacted on the well being of their clients.

        For example, Nick Partridge – yep, the same Nick Partridge who, on the 30th anniversary of the THT this week, proclaimed that we must start getting to grips with the epidemic rate of HIV infection among gay men that, of course, occurred on HIS unending watch!! – took backhanders from Glaxo Wellcome back in the early 1990s to push pos men onto AZT which itself was banned from use on chemo patients it was so highly toxic, hastening AIDS fatalities in the UK!!!

        So yes, Gary, you certainly raise a valid point, and perhaps the NAT would care to respond to it here?

        1. Have you not got any more upto date lines to post Samuel? Same old same old from you every time. I guess you still think that AZT is widely used for HIV treatment in the UK as it seems to be the only drug you either know about. How about linking Nick Partridge to Gilead so you are really up to date on the largest player in the ARV market…………..All headline & no substance!

          1. Samuel B. 6 Jul 2012, 1:57pm

            OK then, W6, how about Glaxo’s ongoing funding to THT to this very day, and Pfizer’s tentacles into the GMFA?

            How can they possibly be a benign influence on these “charities” when their duty to their shareholders is to shift as many antiviral drugs as possible while said “charities”, supposedly, are sincere in their stated desire to see HIV rates fall.

            Somewhat of a contradition in terms, non?

            Or was Sir Nick really just full of bluster earlier this week when he called for renewed action against the spread of HIV?

            Why, he’s a Knight of the British Empire, I hear you screech!

            Such folk are whiter than white and function only to make this world a better place for us all and improve everyone’s health and well being, rich and poor alike, you cry!

            They are not, in a million years, in it for themselves nor are they slyly on the take, you insist!

            How could they be?

            Oh do wake up, W6!!!

          2. I really fail to understand the link between charities such as THT & Drug Companies – HIV charities have very little influence on clinical decisions with regards to which drugs are prescribed, or which tests are used in clinical settings. Your out of date accusation (if it were ever proven) that THT actively encouraged clinicians to prescribe AZT in return for backhanders simply does not wash with me.

            I am not particularly interested in the mis-deamours of the Corporate World, but I appreciate that this may be a big concern for you Samuel, but I think it is unfair of you to constantly make accusations without providing the proof so that others can read & form thier own views.

            This is why we do not get on, because you very rarely provide any reference point to your argument, preferring you use terms such as “most gay men I know” or “the pos men I know”. You have yet to provide any up to date argument that would persuade me that any of your views relating to HIV are balanced.

          3. Samuel B. 6 Jul 2012, 5:15pm

            The THT/AZT scandal made the main news pages of The Sunday Express!!

            At the same time there were rampant allegations of financial mismanagement and impropriety engulfIng the charity, and both soon after Partridge took the helm.

            That he resides at the head of the THT pyramid to this day suggests that he has a Teflon coatIng, and hints at an abuse of power at some level that enables such practises to go unchecked and, as far as any of us know, to flourish.

            That’s why Sir Nick’s anguished words on the need to reduce HIV rates always ring so hollow and false.

            Being effectively accused of accepting bribes and cooking the books, true or otherwise, and abject failure in a task he is funded and mandated to effect results within (reducing HIV rates) would normally result in instant dismissal in any accountable public body.

            Yet Sir Nick thrives and perpetuates.

            Is that be because he loyally follows a pre-determined agenda that serves big business above and before the community?

            Hel-lo?!!

          4. …….and the Sunday Express is well known for its investigative journalism is it Samuel? I have searched high and low to clarify your claims. Whilst it may have been reported, was it accurate, have these allegations been proven?

            I have been unable to find anything to confirm these allegations, if you can provide the reference please do, as I am interested to get to the truth here.

          5. Samuel B. 7 Jul 2012, 1:19pm

            To paraphrase Gary’s fantastically compassion-centred posting above, as our previous bouts on all subjects have shown I deal with human beings and not data.

            You think the answer to all problems HIV-related can be solved by interpreting meaningless statistics any which way that can show a bias to the efficacy of HIV meds as a cure-all to the HIV problem as opposed to a common sense approach to preventing the spread of onward HIV transmission.

            In this latest wheeze to profit out of HIV most PN posters see it as the blatant folly it is and it’s implementation would clearly be only to the benefit of those with their fingers in the pie.

            And still you continue to cheerleader for those who see dollars before the need for compassion and empathy in dealing with this awful disease.

            Take your head out of the sand, W6, because most other people now seem to be doing just that!

          6. These are your intrepretations of my thinking Samuel – you do not know me, you think you can draw conclusions from my postings. The reason I spend time quoting evidence based arguments is because you have very little evidence & post wildly inaccurate observations about HIV, HIV treatment & HIV charities.

            I have challenged you 3 or 4 times to qualify the statements you have made in this particular thread but you never provide your reference point for others to form an opinion. You are all headline & no substance, & quite frankly you are just an a side show. The disgracful thing is that every HIV related debate you go over the same old same old rubbish, never any new arguments to bring to the table.

            I would like to invite you to meet me face to face, in a public place so we can have a discussion about HIV. You might get a glimps of the real person & stop making the unfounded comments to discredit me – somehow I doubt you would consdier such a request as you have no balls!

          7. Samuel B. 7 Jul 2012, 4:45pm

            Anyone else notice how all new W6 postings seem to mysteriously be accompanied a thumbs up or two?

            Oh would that we all had multiple browser access points with which to manipulate the ratings system…

          8. LOL you are obsessed with Reds & Greens Samuel – does it not ever occur to you that many people read these comments pages but do not contribute. Do you really need to have your comments justified in this way? Are you so lacking in self confidence that you require other readers to validate your views?

            More smearing from Samuel as it the norm, leopards & spots

  3. Whilst at home testing may reach some hard to reach populations and increase testing – there are problems with this.

    For example, It’s not like a home pregnancy test, you need really a lot of information about how to read the test and how to use the test properly. Experience of home testing in other areas has shown failures in the testing either due to lack of understanding or other reasons, resulting in increased anxiety and false positives (and negatives).

    Additionally, there is no means to support anyone with a positive test indication and to encourage them to receive support, counselling and where appropriate treatment. HIV diagnosis is not simply about knowing status – its about a healthy lifestyle, which a home testing kit can not provide.

  4. I would be concerned about the safety of this product:

    “The first was that oral fluid testing — using the OraQuick Advance device on a oral fluid swab — detected only about 86% of all of the cases of HIV that were actually present at testing. And this is because it missed not only all of the acute HIV infections in that 14%, but also some antibody positive infections that turned out to be positive on standard — other antibody tests and on the western blot. So we identified that the OraQuick had not performed very well when we used oral fluid.”

    http://www.thebody.com/content/art50558.html?ic=2004

  5. Some of the criticism of the FDA for approving this device in the USA:

    It’s absolutely ludicrous that the FDA keeps approving unreliable tests. That it produces false negatives one out of 8 times in patients KNOWN to have antibodies is outrageous. In newly infected persons, able to transmit the disease, but who have not yet developed antibodies, it would produce a false negative 100% of the time. The only thing this half baked quackery will do is encourage a very large number of infected people to engage in unsafe sex because a bogus test led them to believe it’d be okay.

    The FDA is a bad joke in the hip pockets of shady businesses. There isn’t another country in the world that comes within 30% of the number of recalls of unsafe products and import rejections as the US. The FDA should be abolished or restructured, because in its current incarnation it is more dangerous than nothing at all.

    1. With all due respect Elaine this is not about the FDA, this is about Home testing kits in the UK. I am very sure that further studies will be conducted before home testing kits will be approved in the UK to avoid problems associated with false negative results. The BHIVA & BASHH together with others are likely to ensure that any test used in the UK will bhe as reliable as the technology currently allows. In the UK we tend to take a more cautious / measued approach to the approval & use of HIV drugs unlike the US.

      Duo tests that detect both the P24 antigen (usually present form 3 weeks after infection) and HIV antibodies cannot yet detect an individual when they are at their most infectious, so I think you are wrong to suggest that home testing WILL encourage a very large number of infected people to engage in unsafe sex – where is your evidence to support such a claim? This is just your rather negtive perception rather than based on any anecdotal evidence I suspect.

      1. With every respect, W6

        These are the same kits that the FDA have just licensed and the risks inherent with them exist whoever is doing the regulating. The kits are unsafe and unreliable.

      2. It is partly about the FDA though, W6

        UK regimes almost always consider the views of those regulators in other nations that are considered to be reputable. The FDA usually is considered to be reputable. If there are grounds for concerns about the ethics and decision making of the FDA for this and/or other products then this should set alarm bells sounding for UK regulators, clinical practice and patient safety considerations.

        1. As I have mentioned Stu, in the UK we take a more measured approach – take the example of PrEP – the BHIVA has not been convinced that the evidence currently available with regard to the use of Truvada is of a high enough quality to suggest that Truvada should be used as PrEP in the UK. As a result UK based studies will be conducted to see if Truvada when used as PrEP should be consisdered a suitable intervention. I beleive that this would be the case in relation to this particular test should there be any concerns about reliability etc.

          Elaine no test is totally 100% reliable – surely some degree of testing (even if it is only 86% reliable) is better than no testing – many people have unprotected sex on the basis of what their sexual partners beleive or say in relation to thier HIV status.

          As I understand it NAT are calling for a wider debate on the merits of home testing to form part of the strategy to improve HIV tseting rates in the UK, something THT are also calling for.

          1. I wish I had your confidence, w6

            This matter would be subject to regulation by MHRA in the UK – not the organisations you mention. They may give input but would not make the final judgement call.

            The MHRA have been shown to have been led by the FDA in the past.

            I can see the appeal of home testing – but I have serious doubts about its safety, accuracy and integrity.

          2. I think we have to be open to any intiatives that will help reduce the undiagnosed HIV fraction in the UK. Whilst the MHRA will make a decision on this particular test I am confident that if BHIVA & BASHH have any reservation about this or any other test, they will not recommend the use of such a test in UK theTesting Guidelines. As an example, NICE do not make recommendations or place restrictions on ARV’s in the UK, this role has been left in the hands of organisations such as BHIVA, Clinicians & the Specialist Commissioning Groups – I can see no reason why this would not be the case where a particular test is not reliable.

            We have a long way to go in this debate here in the UK in areas such as home testing, PrEP and other novel aproaches in HIV prevention strategies – lets try and keep an open mind, after all our healthcare system & follow up is very different to that in the US -we have much better outcomes & take a more measured approach.

          3. w6

            I am open to anything which will increase testing, aid diagnosis (and treatment/care) and decrease stigmatisation.

            But not at ANY cost.

            The systems may be better in the UK, but I do not have the confidence in the MHRA or NICE that you seem to – particularly in these times of budget constraints.

      3. Let us not forget that the FDA is totally in the pocket of pharmaceutical company lobbyists and has a history of approving drugs that are later withdrawn because they cause more problems the they remedy whilst doing its utmost to outlaw natural therapies that have been used for centuries without problem.

  6. This is a difficult one to balance and prehaps what needs to happen is to see an expansion of home sampling with the delivery of the test result being undertaken by a trained proffessional.

    Dr Thomm currently runs this type of testing scheme at the moment. %^ Dean Street one of the busiest Sexual Health Clinics in London have been trialing home sampling along with Gaydar in recent months.

    In this model upto 800 Gaydar members were being contacted by PM and offered this service. ?If they wished to participate a sampling kit was sent out, with the results being discussed by one of the clinic staff.

    One of my biggest concerns is that those testing +ve at home may be lost to follow up, confirmatory testing & not linked to care in a seamless joined up way.

    Some people have undue levels of anxiety around HIV,home testing may fuel these by allowing serial tests to be completed – it is not unheard of individuals testing negative several times yet remain convinced they have HIV……..

    1. … this can be very psychologically. We need to make HIV testing something that is as routine as possible if we are going to reduce the levels of late diagnosis & all the complications that go with late diagnosis. I am a member of a UK based HIV online forum & increasingly I read about more & more cases of dangerously low CD4 cell counts (recently a newly diagnosed individual had a CD4 count of zero). In the last year many newly diagnosed individuals from both UK born straight & MSM are presenting with illnesses such as KS & PCP, with many others having CD4 cell counts below 200. These people have to start treatment early, take antibiotics & in some cases are hospitalised until their immune function is restored.

      This should not be happening in the UK in 2012 – HIV testing needs to become as routine as going to the dentist. Home testing is one area that may help bring about this change in the UK. Approx 25,000 undiagnosed cases of HIV will continue to fuel new HIV infections.

      1. Home testing for other conditions in the UK has been shown to be unreliable and unsafe and cause more problems than it solves – why should HIV be any different?

        There is the additional risk of failure to engage in follow up with home testing in HIV, which is more likely to have an impact on others health than in issues such as cancer testing, cholestorol or diabetes home testing etc.

        Furthermore, in other cases of home testing kits the pharmaceutical and medical device manufacturers have been shown to manipulate charities and providers internationally regardless of the efficacy of the product – and thus public and patient safety is not paramount in home testing scenarios.

        Home testing is not gold standard and can make public health worse.

        1. I have clearly stated my concern about lack of follow up, and this is why I believe HOME SAMPLING should be expanded and learn the lessons here before we embark on complete home testing. Where has it been suggested that home testing is “Gold Standard” Elaine? Home testing is one initiative that could improve testing rates – another area which would also have huge benefits is the increase of HIV testing in GP practices, hospital admissions etc.

          Many GP’s / A&E / hospital admission departments often miss the signs of sero-conversion illness and even advanced HIV infection – I personally am more concerned about the lack of education GP’s & other health care providers have about HIV diagnostics than a test that is 86% reliable.

          1. Back off, W6 – I did not accuse you of saying that home testing was the gold standard. I merely said it was not. My comment was no indication of what you (or others) said, believed or indicated.

            The fact is that it is not gold standard.

            The fact is that there are a lot of concerns about home testing being inaccurate and dangerous (I am talking about wider home testing issue here as opposed to the narrower HIV home testing – although UK authorities have had to act recently on safety concerns about HIV home test kits).

            I would agree with your concern about lack of education at GPs etc – but lets not make a situation worse with more tests done without any clinical involvement due to them being in the home setting.

            More tests are only beneficial if they are conducted properly and the information found is analysed and supported properly.

          2. Likewise Elaine

            You may have a problem with the FDA & want to take a very cautious approach to home testing in the wider sense, but so far this test has not even been licensed for use in the UK, all NAT are doing is I beleive asking for a wider debate on the subject of home testing for HIV. Perhaps you do not understand the difference between the Home Sampling Model I have highlighted and the Home Testing Kits that we are discussing here.

            What do you consider to be a “Gold Standard” test for HIV Elaine, what is your experience of taking an HIV test I have to ask?

          3. W6

            I would consider gold standard to include (at least) an HIV enzyme immunoassay (EIA) capable of identifying HIV-1 and HIV-2 antibodies and an HIV-1 Western blot or immunofluorescence assay (IFA) used for confirmation.

            My experience of being tested. My most recent test was at the end of last year when I had a needle stick injury at work. My experience of testing – I routinely take bloods (including HIV screening) on a daily basis in my part time clinical role.

          4. For me the gold standard for HIV testing would include (as minimum) an HIV enzyme immunoassay (EIA) capable of identifying HIV-1 and HIV-2 antibodies and an HIV-1 Western blot or immunofluorescence assay (IFA) used for confirmation.

            My most recent experience of testing was in connect to a needle stick injury at work last November.

            My experience of testing is in connection to my clinical work where HIV tests are a regular component of my work.

          5. Samuel B. 6 Jul 2012, 2:37pm

            Well done for knowing your stuff on HIV, Elaine.

            And for putting PN’s unofficial “expert” and spokesman on all things HIV in his place…

          6. Perhaps you can ask Elaine for some tutoring Samuel, as you have clearly shown you know jack all about the basics of HIV testing, let alone the more technical aspects involved in rapid testing. Perhaps when you know the difference between antiboides, antigens, CD4 cell & viral load tests then I might take your comments seriously.

            If you are going to enter the debate do at least have a basic working knowledge of HIV – as I have said to you before I worry that you actually do not understand HIV transmission routes, levels of risk & the importance of testing in any prevention strategy. This could be putting you at risk of contracting HIV, which I think you would find extremely difficult to come to terms with.

          7. Samuel B. 7 Jul 2012, 2:38pm

            As I noted earlier W6, you consistently favour avarice over compassion in dealing with HIV:- cynically lucrative ways to manage the virus over common sense approaches to preventing its onward spread.

            Not a Glaxo shareholder perchance?

          8. When I have provided examples of the activities I am involved in you have also mocked these Samuel so I have learned that I cannot win either way – which says much more about your agenda than anything else) As always you deflect & stymie the debate when questioned, – at least Elaine had the good grace to answer my direct questions – something you consistently shy away from. As long as you continue to peddle poor inaccurate information I will continue to provide a evidence based argument.

          9. You have not demonstrated any level of compassion in your postings on PN.

            You beleive HIV stigma should be perpetuated, you have ridiculed my mental health condition, you have been incensitive & made wild assumptions about how I got HIV, you constantly portray gay men in a negative light – If this is your idea of compassion then I am glad you think I have no compassion!

            I am very pleased that you have least had the grace to show restraint towards Noam (who has recently been diagnosed) You have a track record of making incensitive remarks about other HIV positive PN contributors. As I always say when talking about blood results “it’s the trend that counts” the trend you have shown since I have been reading your rubbish is a complete lack of compassion as I understand it & you are just to troll all things related to HIV because of the irrational fear you harbour.

          10. W6

            There is a lot that is credible about an evidence based approach. I prefer to work clinicially on an evidence based scenario rather than relying on guesswork, eminence or other viewpoints where its is difficult to quantify the approach, risks and successes. Sometimes, especially in complex scenarios that is not easily possible – and best guesses (ideally based on some evidence) is necessary. In the midst of this three things are crucial – patient safety, patient choice and compassion.

            Testing is good. Increasing testing is very good.

            Home HIV testing is not accurate or safe currently – and certainly has not been evaluated in the UK situation. I fail to see how evidence is being used if there is pressure to move ahead with a system that is known to be inaccurate and which has not even been tested in the UK situation. Its certainly not compassionate to adopt that approach.

          11. I totally agree with your comment Elaine, as a scientist I deal in fact & evidence based debate. I beleive you have made the assumption that the UK will follow suit with OraQuick, this is not my experience relating to HIV (I cannot comment on wider home testing).

            I have clearly stated that I have concerns & reservations & I have suggested that further studies will be undertaken before a decsion on home testing will be made in the UK. You may not agree that stakeholders such as BHIVA, BASHH & HPA will not be able to influence such decisions but I beleive they willt. I have clearly stated that I think the debate on home testing needs to be opened up.

            If you read NAT publications on home testing you may find some reassurances, I think they are right to keep home testing on the agenda. I read & comment omany stories late diagnosis & I am alarmed about the level of KS & PCP we are seeing in the UK, is it compassionate to deny choice of testing options to those most at risk?

          12. The problem is W6, misguided compassion in giving a choice which is unsafe, inaccurate and fails to address the needs of the patient may make the patient feel more psychoogically empowered – but if the test result itself is inaccurate or if there is no support then its misplaced compassion that does nothing to solve the issue for which testing is occuring – tackling whether that individual patient has HIV or not.

            OraQuick is indeed not the only HIV home testing kit. I have yet to read of any home testing kit (either in general media or HIV professionals media) that does not have some concerns about accuracy or safety.

            The problem of late diagnosis will worsen if any of the mechanisms to solve it prove to be unreliable or unsafe. Home testing is currently unreliable and unsafe.

          13. I do not understand your use of the word “unsafe” in relation to home testing. Are you suggesting that HIV testing can only occur in a designated GUM / HIV centre? What are your views on rapid testing? Your argument of late diagnosis is misguided because for those groups who will never engage in traditional HIV testing a home test has an 86% chance of identifying a positive result. Granted that the individual then needs to access care, but the very fact that they are interested in taking a test demonstrates they want to know thier status & hopefully access care.

            We have a very high % of follow up to care in the UK, much higher than in the US – I remain confident that with the great peer support, telephone & online resources provided by the likes of THT there is the support available to individuals testing positive in a home setting. We should acknowledge that people are using illegal home tests, surely you can agree that this needs to be stopped & a regulated test made available.

          14. What do I mean by unsafe in relation to home testing?

            Unsafe because:
            a) The test kits (not just Oraquick but all home test kits I have read about) have had significant concerns about reliability and accuracy raised either by large community groups/clinics or by scientists who are well known in the HIV field. If the results of the test is neither reliable or accurate then giving unreliable and inaccurate information about the test results presents a danger both to the individual patient and to wider public health. I regard that as unsafe practice.
            b) There are risks to the patient which are not dealt with by failing to have availabilty of pre and post test counselling and discussion. Not every patient might need counselling every time – but particularly those testing for a first time or in a perceived risky situation should have that option easily available to them. Of course it should be for each patient/client to determine if they wish that support.
            c) Without adequate follow up

          15. then confirmatory testing is not possible and the risk of false positives and negatives increases.
            d) As with much other home testing technique needs to be good and consider various issues such as aseptic technique and other issues which could contaminate sampling. These issues need resolving.
            e) The system to deal with this neither exists in the UK nor is the support there to back the patient up.
            Bottom line, the test could happen but its result has a reasonable risk of being inaccurate and the patient has no easy means of support pre and post test =- mechanisms do not exist to ensure this.
            The risk to the patient is too high.

            No where have I said that the only place testing can occur is in a hospital or GUM setting – so please do not put words in my mouth, W6. I believe these settings are safer for the patient and more reliable – however, if alternatives can be developed which are both accurate, safe and support the patient (having been evaluated under the UK system) then I would

          16. support them.

            Your contention that my argument about late testing being misguided appears to arise from you misunderstanding what I mean. What I mean is that if tests are shown to be inaccurate (and current home tests are known to have that risk) and this becomes public knowledge – that will further deter hard to reach groups from accepting tests because they can not be relied upon, having spoken to potential hard to reach clients in homeless outreach and other services this is a view that has been expressed to me.

            It is unreasonable and unrealistic to extrapolate any statistics about current HIV care, access to care etc and relate that to home testing – because this is a complete unknown in the UK. We have no system to achieve it.

            If a home test kit is developed that is reliable and accurate then it should be trialled (as Stu has suggested) under a randomised control trial – there are feasible ways of achieving this that other countries have or are examining with other hard to

          17. reach pateint group health issues, that could be adapted to HIV testing. The test kit needs to be accurate and then the system of support etc designed and trialled and reviewed.

            You may work on stats, W6 – and I find them interesting and useful to base my evidence based clinical care upon. Thats why I need an accurate test kit to endorse it – I need the evidence to say it is accurate. Thats why I need an RCT to say the system of support works (or predominantly works) in the UK. However, bottom line – my concern is not about statistics. My concern is not about the virus. My concern is about the patient as an individual and their safety, their dignity, their choices, their support and their needs.

            Currently, home testing does not meet the needs of a patient who might be concerned about HIV diagnosis – whether they are hard to reach or not. Its not safe and the systems to support do not exist.

          18. Elaine

            You have presented some interesting views, its just a shame that you did communicate your knowledge earlier rather than just make generalised statements about wider home testing initiatives & launch a full on attack on the FDA. I also beleive that you have mis-interpreted the postion that NAT has on home testing, this is not helped by the way the story has been presented on PN. Home testing as a concept has to be helpful, but I beleive you have focused on the negatives rather than acknowledge the concept.

            I beleive I have clearly raised some of the concerns you have, but you were very quick to make a judgement on my postings & dismiss my point of view which is not helpful. I still hold the opinion that you are assuming that the UK we will just rubber stamp the FDA decision – this is not my experience & I hope this will not be the case – but I may be proven wrong.

            I will take my chance with the position NAT & THT are taking with regard to home testing.

          19. Would you have responded to me differently if I had preambled with my professional experience?

            With respect, W6 you (I believe) are already diagnosed as positive – so the patient safety issues with home testing are not something you will “taking your chance on”. Its not your safety I am concerned about.

          20. W6

            Would you have responded to me differently if I had included an initial preamble about my professional experience and knowledge? If not, why do you wish I had told you this first?

            Also, with respect, I understand you are diagnosed as positive, so in that regard you would not be “taking a chance” with home testing. It is also not your safety and choices I am concerned about.

          21. W6

            Why would you have preferred me to have told you about my professional experience earlier? Would it have made you change your response to me if I had given a preamble explaining my knowledge base?

            With respect, I believe (from your comments) that you are diagnosed as positive. This being so, then you would not yourself be “taking a risk” with HIV home testing and it is not your personal safety, choices or needs that concern me about this matter. I will continue to stand up for potential HIV patients being tested with integrity and ensuring they are given access to the support they may well need. If a safe method of engaging this through a home setting can be achieved – via a testing mechanism that has accuracy and integrity and has been tested via RCT procedures in the UK – then I will endorse it. There is no such current kit that is safe and until there is there can be no such RCT in the UK.

          22. Actually it would have done – despite the way I am portayed on this site by some commentators I do not have fixed views, so I am suprised that you did not feel able to qualify some of your statements from your experiences & knowledge.

            Yes I am HIV+ & I am a community advocate – sadly I read many personal stories on a UK based HIV forum from newly diagnosed individuals. Some of them have been diagnosed late, with CD4 cell counts below 200. We are seeing more AIDS defining illnesses in the UK – I have to ask why is this happening in 2012?

            My perception of your postings have been that you have assumed NAT have endorsed OraQuick without taking the time to perhaps gain an understanding of the context in which NAT have been campaigning for home testing – it is right & valid that we should explore home testing in the UK, & I think I have indicated that home sampling is a way forward to try to understand how home testing may work in the UK.

            Thats me done on this subject

          23. Oh if only it was, W6, if only it was…

  7. My concern isn’t about the test itself. Nor is it about people seeking to find out their status. I know from first hand experience that knowledge is power (I was near death after only 3 months of being infected with HIV).

    My concern is the lack of counselling before and after the test. In testing done at local facilities there is supposed to be someone there to discuss the issues with you, help you understand HIV, and talk with you if you test positive. With this test there will be no one there to help you, hold your hand, explain what the results mean, give you information about where to go for further help. There won’t be a shoulder to cry on, or an ear to listen if someone gets angry and needs to lash out. Worse, some people who test positive may end up causing harm to themselves, even going so far as committing suicide. Things that could be prevented with counselling.

    1. Thats one of my major concerns too.

      Knowledge is power – particularly if when the knowledge is not what you would like to hear (eg a postiive test outcome) that you have professionals and experienced empathetic people to help you make informed choices about sustaining and improving health.

      However, knowledge is only power when it is is good knowledge. If the test is unreliable – which many home tests have been shown to be – then thats disempowering and could be harmful.

      1. We should be clear that no quick test provides an HIV postive result – this needs to be confirmed by other blood tests. Rapid testing such as finger prick tests should only be described as being reactive – whilst this may seen to be a play on words it is am important point that all good rapid testing facillities should clearly point out to help avoid the problems you describe Noam. If there is a reactive result the indiviudal will need to attend an HIV / GU centre for further follow up & further diagnostic tests.

        I would agree that knowledge is power, and that there is a concern about how clear the instructions will need to be to ensure that anyone taking a test at home will know where to access that confirmatory HIV test and at the same time gain the appropriate level of care & support. We should also recognise that there are a group of people who may never access “traditional” testing methods & therefore home testing will allow them to be empowered & take control.

        1. Thats all well and good – but the manufacturers do allow the impression to be given that it provides a result. Deliberately so, and they create a climate of false security in home testing which has been established in home testing kits for other conditions and infections that have been around much longer.

          The manufacturers are less concerned about public and patient safety than they are their image.

          1. I am not sure if you live in the UK or the States Elaine, but I beleive there is a big difference in terms of how home testing kits are both perceived and used in the different Countries. I have clearly stated that I understand the concerns of Home Testing but to dismiss it from the outset is nonsense – it is an impoortant aspect of finding new ways to prevent late diagnosis of HIV here in the UK.

            In your postings you have highlighted concerns about home testing in the wider context – all well and good but this article is specifically about HIV home testing, & I for one are confident that on balance some form of home testing kit will pl;ay a vital role in improved sexual health here in the UK.

          2. I live in the UK and work in a significant infectious diseases NHS sub regional clinic.

          3. Samuel B. 6 Jul 2012, 4:03pm

            Hear hear Elaine. Oh hear hear!!!

      2. Samuel B. 6 Jul 2012, 2:42pm

        Spoken almost like a prophet, Stu.

        Seriously impressed!

        However, I guess we will forever be at loggerheads as to what constitute “good knowledge” where other matters are concerned.

        Baby steps for our online relationship, perhaps, but steps in the right direction.

        There’s hope for me and W6 yet!

        1. You have got to be joking Samuel – you & I will continue to have polarised views particularly after your last display to discredit me. We should agree to disagree and alloow others to debate these important issues & prevent all HIV related threads becoming the Samuel & W6 side show.

          Enough said me thinks!

          1. Samuel B. 6 Jul 2012, 4:07pm

            And there was I thumbing up your stance on a completely non-related HIV subject just the other day!

            Never again (seethe)!!!

          2. As I have said to you several times Samuel I do not come here to get “thumbs up” or “thumbs down” – I am here to add to the debate, no other underlying agenda which you constantly suggest I have, yet cannot substancialte such claims!

          3. Samuel B. 6 Jul 2012, 4:35pm

            Well, clearly someone who shares your lone enthusiastic stance on these HIV home test kits appears to have been trigger happy with the thumb scoring by all accounts, so who are you trying to kid!!

          4. Here we go again, perhaps ask PN to provide you the details of the reds & greens, as they are so very important to you Samuel.

            You leave me alone & I will leave you alone, best for all me thinks

  8. Illegal home testing kits for HIV are giving people incorrect results, the Medicines and Healthcare products Regulatory Agency (MHRA) has warned.

    It said there were issues with other tests for sexually transmitted diseases which were legal but might also be inaccurate.

    The body is investigating a UK website which is selling the tests.

    The Health Protection Agency has written to some of those affected to say the tests are unreliable.

    Sales records gathered during the investigation showed that about 500 tests for sexually transmitted diseases – such as HIV, chlamydia and syphilis – had been sold.

    It warned that as well as home HIV tests being against the law, the other tests did not meet European regulations.

    Susanne Ludgate, MHRA clinical director of devices, said: “We’re concerned that there may be a number of self-test kits being sold online that may not be compliant with the relevant piece of legislation and we’re urging people not to consider the internet as a method of

    1. anonymous testing.

      “These kits may be unreliable and there is a significant risk they could be providing the user with a false result.

      “The instructions for use might also be incorrect or confusing and not adequate for someone trying to use the kit in their home.”

      The Health Protection Agency in the UK were so concerned about these kits that they contacted every person they could identify that had ordered one to discuss possible retesting and counselling.

  9. The availability of access to potentially unreliable testing instruments is of grave concern. Despite controls in the USA and UK, unapproved HIV home test kits continue to be marketed and sold in a seemingly indiscriminate manner – over the Internet and in newspaper and magazine advertisements. One of the worrying aspects of the unregulated use of home tests is that there is no guarantee that the test kit is genuine or will provide accurate results. Typically, customers cannot know for certain whether the testing instrument that comes in the kit they purchase is reliable. This means that they cannot know with any degree of certainty that the test results are correct.

    The most fundamental arguments against home testing relate to concerns about the possible absence of counselling and informed consent. The primary objective of counselling before an HIV test (i.e. pre-test counselling) is to facilitate informed decision-making about testing. It serves as a means to provide education

    1. and information about HIV transmission and prevention so that individuals can make informed choices about whether to take the test. Of particular concern with regard to home testing systems is the potential lack of post-test counselling. The purpose of post-test counselling is to inform individual clients of their test results, to offer them a comprehensive HIV prevention package, to encourage them to go for regular testing, to reduce the risk of transmission or acquisition of HIV, and to offer emotional and psychosocial support and referrals. theoretical arguments can be made in support of HIV home testing, its introduction should be based on sound scientific data, a thorough risk-benefit analysis, its cost-effectiveness, and consultation with prospective users, around acceptability and cost in particular. The translation of US testing kits to the UK context requires consideration of several issues. First, an appropriate test must detect HIV subtypes and clades that are prevalent in

    2. the region. Second, the test should be easy, safe and quick to use, and simple to interpret; there should ideally be no (or minimal) room for user error. Finally, expanding HIV testing through home testing is only beneficial to individuals and the public at large if testing is linked to effective prevention, medical care and psychosocial support. Introducing home testing therefore requires that efficient measures are in place to ensure clinical care and support services for those who are identified as infected at home.

  10. These tests look for antibodies (not HIV antibodies). This means that if you’re pregnant, had the flu, received vaccinations, or have any of the dozens of other conditions that are known to cause false-positive tests, the test might flag you as HIV-positive.

    1. Samuel B. 7 Jul 2012, 2:25am

      Exactly.

      Just as these zealous “testing buses” that insist on pulling up outside bars and drug-fuelled saunas are likely to show a higher proportion of false negatives due to the abused immune systems of many of their inhabitants.

      I shudder to think how many gay men today are unnecessarily abusing their bodies even more by taking HIV drugs as the result of a false-positive blood test.

      Still, so long as the pharmaceutical companies are raking it In, who’s to complain?

      Ain’t that right W6?

      1. As usual Samuel your knowledge & analysis of rapid testing & the confirmatory testing is woefully inadequate – you clearly have no idea about the protocol,s that exist to ensure that no one is given ARV’s unless this is clinically indicated.

        I will repeat that the decision to treat is based on CD4 cell counts, connections & other underlying health conditions, not the result of a rapid test as you are implying & have previously claimed.

        Your knowledge of HIV testing, treatment & care is rudimentary at best, this is why so done has to provide the balance to your very flawed arguments.

        PS I seem to remember that outfit Status introduced the “testing bus” in Soho that you seem to be so highly critical of!

        1. CD4 is the principal decision maker in prescribing of ARVs.

        2. Samuel B. 7 Jul 2012, 2:54pm

          Yes, not one of their better policies, granted.

        3. Samuel B. 7 Jul 2012, 2:57pm

          BTW, just like old times being back in a three-way with you and Stu.

          Oh the nostalgia ;)

      2. And just to clarify Samuel, CD4 cell counts are determined by laboratory tests requiring blood samples to be drawn & the lymphocyte subset analysed.

        CD4 cell counts do not form any part of an HIV test – this is basic information that I would expect the majority of interested contributors to be aware of, seems you have some reading up to do Samuel, Aidsmap provide very good quality basic, easily understandable literature on these very basic topics!

      3. connections = co-infections

  11. http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0011581

    When evaluated in a healthcare setting (and it is an established fact that at home this reduces reliability due to numerous variables) these tests are less reliable.

  12. Seattle’s Public Health Department has found evidence that the only rapid HIV test licensed to screen both saliva and blood (OraQuick) was not as accurate as the manufacturer claimed – it missed 8% of 133 people who were later found to have HIV. These results raise a question for all jurisdictions using oral testing: is reaching a wider range of people with testing worth it, if the results may be flawed?
    Since the introduction of OraQuick in 2004, spikes in false positives have been reported at least twice, causing alarm in San Francisco in 2005 and halting use of the test in New York City. But in some ways the Seattle results are more troubling. False positives can be re-tested with rapid blood tests immediately, but false negatives represent missed opportunities to diagnose people who are infected before they become seriously ill.

  13. We should also be mindful about the new arrangements for Sexual Health & HIV Prevention services that will come into force in 2013, where responsibility for these services transfers to Local Authorities & Health & Wellbeing Boards.

    This is likely to change the landscape of HIV testing in the medium / longer term, so it would be very short sighted to dismiss any form of intervention that will ensure testing rates improve and become as routine as going to the dentist.

    More HIV tests are now being offered on an “opt out” basis rather than the traditional “opt in” pre-councelling models – this is an attempt to make HIV testing more routine; as we have seen in antenatal care testing has been very beneficial.

    Given the actions of the CONDOMs we can only expect to take more and more responsibility for our healthcare – choice should be available for those who feel a reliable home HIV test could mean them being diagnosed early & therefore receiving the treatment & care they will need.

    1. W6

      I am with you that increased testing is a good thing.

      However, it is only the case if those tests are accurate, safe and protect the patient.

      Home testing kits for other clinical concerns have been repeatedly shown to be very concerning and have significant margin for error or be misleading. There is no reason to believe there would be a different experience with HIV kits. Indeed, there have been numerous experiences of significant problems with the kits NAT have referred to (in Hawaii, Seattle, New York, Canada and elsewhere) which the manufacturer have tried to brush under the carpet and which the FDA disrgarded in their consideration.

      Now, its perfectly clear that we must consider new technology. Its perfectly reasonable to encourage more testing. However, not at any cost – and whilst you may come from an angle of increased testing is a good thing, that needs to be tempered by ensuring patient safety.

      Ultimately, patient safety is compromised by the lack of follow up

      1. NAT have not endorsed this particular test – the way the article is written suggests this but if you read both the 2008 NAT report on home testing & the more recent HIV testing action plan, NAT acknolwedge the need for further research in terms of the acceptability of using home testing kits.

        We have lost sight of the fact that there are a group of individuals who would benefit from having the choice of home testing. As with everything there will be some difficulties, but we should try & at least recognise the value of home testing in hard to reach communities & individuals.

        I do not beleive that NAT or any other HIV charity are suggesting that home testing should go ahead at any cost as you put it. As you have already said Stu, unlicensed kits are available & are being used in the UK- this needs to change to a regulated system with all the appropriate checks & balances in place.

        I think this article has led to confusion & assumptions that OraQuick will be authorised in the UK.

        1. I think your comments are disingenuous, W6

          NAT are endorsing the FDA decision re these tests.

          http://www.nat.org.uk/News-and-Media/Press-Releases/2012/July/Home%20testing.aspx

          1. Sadly I do not agree with you Stu on this point – NAT have endorsed the use of home testing kits, not the OraQuick home testing kit.

            Ok I am being pedantic here, but a great deal of the postings have questioned the accuracy of OraQuick tests, & many assumptions have been made. We have no indication how these tests will be made available, what guidance there will be etc.

            Like I have said earlier I have concerns about home testing, so why not expand Home Sampling first as a way of moving towards home testing?

            The concerns you raise are valid, but I am sure similar arguments may have been made before the introduction of home pregnancy testing.

          2. W6

            We will have to disagree on this, then.

            NAT have endorsed home testing – and for the reasons I have already addressed on here (and other reasons) I regard that currently as a dangerous viewpoint to take that risks patient safety.

            The kit identified has raised significant concerns about its accuracy. Others have also shown issue in terms of accuracy.

            If home testing kits are to be expanded – then run a randomised control trial and scientifically assess their viability before releasing them to the public. Its difficult but feasible.

            Pregnancy test kits are very different to HIV home test kits and not a really valid comparitor.

          3. I agree NAT have endorsed home testing, but they have not endorsed OraQuick.

            If you read my listings Stu I have called for the expansion of home sampling as a measure to see what the uptake will be, the loss to follow up & care rate. NAT also suggested this approach back in 2008.

            You will also note I did not make a direct comparison with HIV testing & pregnancy testing, but wanted to point out that I am sure that when pregnancy tests were first made available similar arguments about the safety of the patient were raised (mental health, illegal abortion, concealed pregnancy etc.)

            I share some of your concerns that you have, & have clearly stated them, but I really do think you are in danger of being overly concerned; after all as it stands today home testing remains illegal in the UK & is likely to stay that way for the foreseeable future.

            I believe NAT is right to put this on the agenda for further consideration to help reduce new HIV infection rates.

          4. W6

            You think I am over cautious is being concerned about patient safety?

            I profoundly disagree.

            I agree encouraging testing is good. Provided the testing mechanisms are safe, reliable and consider patient needs and awareness.

            Until this is sure with any individual home testing kit – then in my view it is irresponsible to suggest home testing whilst it remains unsafe, inaccurate and patient welfare and knowledge are not effectively supported. To do so is letting down the patient.

            Lets increase testing, but not at the cost of patient safety. For me, as a clincian, I want to improve HIV infection rates, I want to decrease stigma re HIV, I want to encourage HIV testing etc etc – but patient safety is sacrosanct, and anyone who seeks to compromise that is irresponsible.

          5. I get that Stu, but unregulated home testing kits are already available & used in the UK – I have been aware of this for sometime. It is my belief that to ignore that this is happening is equally irresponsible.

            The Government should review home testing; are you n favour of home sampling at the present time or do you also see this as irresponsible? 56 Dean Street in London have found this novel approach works well & I would like to see this expanded, again as I have previously posted on this thread.

            Risk based HIV testing, as we see from missed opportunities in primary & secondary health care settings is failing some people, & there is a high cost to pay in terms of HIV complications & the increased cost to the NHS associated with late diagnosis & forward transmission.

          6. W6

            Are you saying the Department of Health and MHRA should legalise home testing even if it is unsafe, inaccurate and fails to meet patient needs or expectations?

          7. if you read my postings carefully Stu you will realise I am not saying this at all. You are misrepresenting my postings & suggesting that an irresponsible approach should be taken to home testing, which I feel is somewhat uncalled for.

            You obviously feel very strongly about this, but I think you are blinkered in your approach & to the potential benefits that home testing has to offer.

            As I as we should agree to disagree on this topic.

          8. W6

            I dispute that I am blinkered by anything and have clearly shown that advances need to be made on improving testing, and if this can be done by home testing this should be encouraged – WHEN it is safe and not before.

            If this means you perceive me as being blinkered by patient safety – then so be it. I would regard that as a misrepresentation.

            I would suggest you are blinkered by you desires to see extension of testing that you appear unaware of the risks to patient safety or prepared to sacrifice patient safety to ensure increased testing.

            Patient safety would be compromised by home testing of HIV currently. That is why it is currently illegal in the UK.

            If you want increased testing. If you want to explore ways of getting testing to hard to reach groups. Then finding ways of establishing safe methods is what should be explored – not introducing something that is unreliable, inaccurate, unsafe and which fails to support patient needs (some of which they may be unaware of)

          9. Samuel B. 7 Jul 2012, 3:07pm

            Clearly game set and match to Stu.

            I would settle for love-all but way to go!!!

          10. W6

            A point I intended to make before, the fact that unregulated kits are available via the internet does not mean that the UK should regulate them – that should only happen when both the kits themselves and the mechanisms by which they will be available are safe, accurate and support patients.

            Handguns are available illegally in the UK (and I am told via the internet) – doesnt mean we legalise them. Pedantic I agree, but it seemed to be an argument you made above.

          11. Surely some regulation is better than no regulation – it has to be better to be able to purchase a test that has been studied & the accuracy is known, rather than rely on rogue internet purchased tests. Likewise if the test is only 86% accurate, surely this is better than no test at all. Perhaps you are assuming that home testing wil become more popular than going to a clinic or community testing initiative – personally I do not see this happening.

            As I commented in a reply to Elain,e where has this concept of “unsafe” come from? I get that there is an issue with accuracy but do not get the “unsafe” bit. Perhaps you can explain what unsafe means to you Stu.

          12. I disagree, W6

            That some people are able to obtain illegal home testing kits for HIV is not a reason to legalise them!

            Consider the fact that prescription only drugs (of debatable quality and integrity) are able to be purchased via the internet without a prescription. That some people are able to obtain something prohibited in the UK does not mean we should make it easier! Would you remove the prescription only status of drugs because some people can get them via the black or grey market?

            The testing kits are not accurate and UK clinicial and regulatory bodies should not encourage any involvement with them until and unless they become accurate and there are mechanisms in place to support the patient/client concerned. This should be evaluated by a RCT. Deregulating currently would be asking regulatory bodies to act on a basis where the accuracy of kits was concerning and their viability in the UK was not determined – thus it would not be evidence based.

          13. As for what I deem as safe (I thought I had repeatedly made this clear, if not I apologise) – a reliable test kit that has been evaluated in the Uk situation – where adeuqate and approrpiate support mechanisms exist to support the patient. That does not exist in the UK. Elaine went into more detail than myself about unsafe and I agree with all she said.

    2. available after and before home testing.

      Sure we should take responsibility for our health. But that must be based on informed choice. You have a good understanding of HIV issues – many people do not. You may have the competency to carry out a home test. You may do it correctly. You may understand the limitations of that test. However, not everyone can – not everyone would. They deserve to be able to make informed choices and home testing does not allow their decisions to be on a fully informed basis.

      And thats nothing to say about the accuracy and validity of the actual testing itself which is questionable.

  14. At the end of the day that old maxim “follow the money trail” always applies.

    If there’s an easy and fast buck to be made the corporations will be there, no matter the risk posed to the public.

    But we’re sorely mistaken to believe any initiatives such as this are dreamed up because they genuinely have our interests at heart.

    No, they have shareholders to appease and profit targets to hit and they’ll achieve that any which way.

    Just look what happened to Sir Nick’s chums at Glaxo this week:- fined $3 billion for the litany of shady practices it employed in the US to boost the bottom line.

    We’re cannon fodder where they’re concerned, and I can’t help think that the rush to put pos people on meds even when they’re still exceptionally healthy and their T-cell counts are buzzing is due to pure unbridled greed.

    Even HIV prevention now seems to be entirely geared to getting us to test rather than educating us about how to stay negative.

    Now who could be behind THAT wheeze I wonder?

    1. I’m not sure about the facts of your claims about Glaxo or others, Samuel – so I won’t comment there.

      I also don’t know that even if what you say is accurate that it necessarily can be extrapolated to show similar behaviour by the manufacturer of this testing kit.

      However, regardless of the money trail – there are some very good reasons to be concerned about this testing kit and the actual view of testing at home.

      The medical devices manufacturing industry have made a lot of money from the public recently by selling automatic sphygmomanometers for the measuring of blood pressure. Ask any primary or urgent care clinciian and they will tell you that it has created a proportion of people in the population who are obsessed with their blood pressure, and a slight variance that the clinician regards as totally insignificant becomes a matter they seek an urgent consultation about. The issue is that they can record their blood pressure but they do not understand the physiology of blood

      1. pressure, what influences it, when to be concerned etc etc. They become alarmed for unnecessary reasons. Now, whilst it is difficult to completely see this as a good comparitor for home HIV testing – the correlation that does exist is that people would be testing without the requisite knowledge. They would not know why they were testing, how to test, what influences a test and what the consequences of a concerning test might be. That creates uninformed decisions and risks patient safety.

        1. Samuel B. 6 Jul 2012, 2:51pm

          Well, Glaxo has received more acknowledgements in THT’s annul report for its funding than just about anyone else, and Pfizer’s name has appeared in tandem with GMFA’s work over the years, be it as a funder, a sponsor or whatever.

          How do these charities who supposedly are sincere in their approach to HIV prevention – yet whose approach has been virtually universally condemned for their failure to make any impact – justify their financial links to drugs manufactures whose interest it is to see rates continue to climb?

          It is the proverbial elephant in the room that most of us appear set on continuing to ignore, yet this mass denial is destroying our health and well being and, yes, lives.

          Time to wake up and smell the coffee?

          1. At least we can agree on some issues, Samuel (even related to HIV, which is something of a surprise!).

            I might have a look at the Glaxo situation another time, but at the moment – I’m going to say I can see the theory but not sure the argument is completely correct. I will look at it though and try and form an opinion.

            At the moment though, home testing scares me with regards patient safety.

          2. You must be reading a very different Trustee Report to me then Samuel – last year Corporate donations totalled £256 million for THT – & there is a list for all to see towards the back of the annual report & also what these donations are used for. This is the only place where I can see any acknowledgment to ViiV Healthcare as GSK’s HIV business has been called for over 2 years.

            Perhaps you can provide the details of the acknowledgments that you are referring to so that all the readers may view them for clarity! I suspect this is just another attempt to discredit THT without you doing your homework. Time & again we see this with your postings, one would have thought you would by now have realised that some subject knowledge is useful to have if you are going to make such claims!

          3. Samuel B. 7 Jul 2012, 3:22pm

            How many annual reports have you gone back on W6?

            Glaxo are clearly listed as major donors in a good many of them, under their many and various name changes over the years from Glaxo Wellcome to GSK.

            The THT AZT and financial scandals were also a regular mainstay of free newspaper Capital Gay way back when when real journalism still counted for something in the gay media, before it became all about reprinting THT’s spin doctored press releases verbatim.

            Really, W6, your cynicism knows zero bounds.

          4. Cheap shots when cornered eh Samuel, you live in a fantasy land, some kind of throw back to when charity in it’s true sense of the word. The Charity landscape has changed for all, times have changed – this may not be for the better but we are where we are, you need to deal with this reality!

          5. Samuel B. 7 Jul 2012, 6:19pm

            The only person cornered in this debate is you, W6, who like all cornered creatures proceed to lash out at all comers who, one after the other, proceed to blow away your bull and bluster (thank goodness for the emergence of Elaine, someone who really does know their stuff on HIV and who has firmly put you in your place!).

            In other words you have shown yourself to be the village pariah in this debate (thought I would get in there before you resort to hurling your “village idiot” brickbat my way)…

          6. How interesting that given that Elaine tends to think along the same scientific lines as I do, that you should be singing her praises Samuel – just shows that you are here to troll, specifically me! It makes my skin crawl the way you cosy up to other commentators just to discredit me. The way you are trying to ingratiate yourself with Stu is sickening & if I were him I would have none of it after the disgraceful way you have treated him on these comments pages.

            Have you actually made any direct comment about the use of home testing in this thread? Probably not because it is way out of your depth. As for me being a pariah do I really care what you think Samuel? The answer is no. I do not seek validation from others about my well researched views, I am confident that I know my subject area & am happy to debate at any level – shame it is always at remedial level with you!

            You should take time to at least gain some understanding of the basics of HIV as you are bottom of the class!

        2. As I alluded to earlier on, testing anxiety is a real concern that I have – we already see this, i-base last year closed its questions regarding HIV testing and “am I infected” type questions because of the number of anxiety driven questions. Ask any HIV helpline or read any HIV forums and you will see the kind of problem is already widespread. I do not see that home testing will add to this particular problem, but it has to be considered.

          1. I suspect home testing will add to this anxiety and worsen other forms of health anxiety

            However, more importantly – it is unsafe and inaccurate.

          2. ……Stu I am unclear if you are against home testing totally or if you are just concerned about HIV home testing.

            Many individuals up and down the country successfully undertake home testing, which men’s more are taking interest in their healt, this includes pregnancy tests to blood pressure tests – I am wondering if your reluctance to give individuals a choice is more to do with a “paternalistic Dr knows best” approach.

            I think you are over egging the pudding to say that home testing is both unsafe & inaccurate, & in the context of HIV does nothing to reduce fear & reluctance to test.

          3. W6

            Believe me, for me as a clinician patient choice is only trumped by patient safety.

            I believe in patients making informed choices about their care. There are elements of paternalism that are appropriate in some situations but by and large patients should be encouraged to having as much involvement in their care and health management as they can.

            I am strongly for appropriate and safe home testing, where it is accurate and beneficial to the patient.

            So, pregnancy testing generally is a good thing at home – although in some cases does require a more detailed lab test for confirmation.

            Diabetes monitoring is great at home etc etc

            However, there is a danger with home testing that patients are monitoring conditions or physiological observations about which they lack understanding of the meaning. Thats partly a patient education issue but not entirely.

            Sensible patient testing is a great and empowering thing. Provided its safe, reliable, and the patient knows what they are doing

          4. and when to seek help. Further health anxiety can be caused by unnecessary testing etc.

            Now in terms of HIV testing, if the testing is unreliable and the support that patients need pre and post test is not available then I consider it to be unsafe. I have yet to see a home testing kit that has not had questions about its integrity raised. Managing a diagnosed condition at home is entirely different to managing a first diagnosis. I doubt your HIV was dagnosed by a home test.

            Increased testing is a laudable aim – but not at the cost of patient safety and I feel you believe patient safety can be compromised if it means more people can be tested and thats concerning.

          5. I am very concerned about patient safety, but there has to be a good balance struck – I am concerned about late diagnosis of HIV, we really should not be seeing PCP, KS & other infections associated with an AIDS diagnosis a the levels I witness across the UK .

            Surely patient safety is also about early diagnosis & the public health consideration of primary HIV infection which is fuelling new infection rates.

            I have posted my concerns about care follow up, patient anxiety but it seems you discounted these comments & have arrived at a conclusion that I am not concerned about patient safety, which if I may say I think is disingenuous.

            Home testing may provide the safety for those who do not engage in traditional testing settings – it is a judgement call, but I think expanded testing will help our fight against HIV.

          6. W6

            I think thats unfair.

            I didnt come back to you on issues I agreed with you on, and only commented on some of those where I disagree.

            So I recognise that in some areas there is some commonality.

            I do think your emphasis on patient safety is risky and may harm both individual patients and the wider HIV fight if it were to go wrong.

            As for something I have mentioned, that you appear to have ignored – I suggested a randomised control trial to help determine if and how home testing can be made as safe as possible and reasonable.

            If the tests themselves are inaccurate or unsafe then testing people with an unsafe or inaccurate test might increase volumes of testing – but those tests will have no value.

            I am not against home testing per se. It has to be safe, accurate and meet patient needs and expectations. Currently, I am not convinced the safety issue is met with HIV home testing – let alone, accuracy, needs or expectations.

          7. We should agree to disagree Stu because whilst there is some commonality I firmly beleive that the concept of home testing forms an important novel approach in HIV prevention.

            Whilst I have not directly acknowledged your suggestion about controlled trials I have clearly suggested that more work is required to ensure that should home testing be available then it has to be acceptable & as reliable as the technology allows. I mentioned the involvement of BHIVA & BASHH but it seems you feel they will fail to influence any decision on home testing.

            I beleive NAT are right to keep home testing in the public eye, it is an important debate to be had, but I have to disagree on your views on home testing – perhaps I will be proven wrong, but there are many assumptions beng made about home testing.

            Perhaps my judgement is clouded by the numbers of late diagnosis that I get to read about, & all the trauma this causes. I guess we will have to wait to see what happens here in the UK.

          8. W6

            Home testing would be great if it was safe. Currently it is not.

          9. Samuel B. 7 Jul 2012, 3:40pm

            What element of late diagnosis is it that concerns you, W6?

            The loss of a life, or the loss of a £500,000 pill-popping opportunity for the pharmas?

            Sometimes I really wonder, W6.

            Really I do..

          10. More cheap shots Samuel – have you nothing else to add apart from constantly trying to discredit me? Same old from you everytime.

  15. NAT state that they seek have a “strategic aim of the organisation is early diagnosis of HIV through ethical, accessible and appropriate testing, for both individual and public health benefits”. For testing to be ethical and appropriate, and indeed for it to have individual and public health benefits then those tests need to be safe, accurate, meet patient needs and expectations and not cause other health problems in the patient. Current HIV home testing does not meet these standards so I fail to see how NAT can support home testing – if the kits available do not meet the ethical, safety and clinical needs of patients or the wider public.

    1. Samuel B. 7 Jul 2012, 3:59pm

      Lest we also forget, Stu, PN published a story earlier this year citing the NAT’s dire financial situation.

      In light of this we MUST be told if a financial inducement is involved in its singing up this madcap, fundamentally unsafe home-testing kit.

      A letter of complaint to The Charity Commission to follow swiftly thereafter if proven thus.

      1. More smears from you Samuel – provide the link to said story please so other readers may make thier own judgements!

        1. Samuel B. 7 Jul 2012, 9:45pm

          Happy to oblige, W6:-

          http://www.pinknews.co.uk/2010/09/13/national-aids-trust-launches-fundraising-drive/

          And since this story appeared, the NAT’s financial situation has not significantly changed.

          FACT.

          Now, who was it who once said “Condemnation without investigation is the height of ignorance.”

          Why, only one Albert Einstein…

          1. Samuel B. 7 Jul 2012, 9:49pm

            There was mention of NAT’s ongoing financial problems on PN earlier this year but the link evades me for now.

            I will source it when I have more time tomorrow, IF I am not too hung over after tonight’s Pride festivities..

          2. And rather than rely on news articles I thought I would check out NAT’s accounts which are in good order & and show a well managed organisation. The list of Corporate donors is available for all to see, so there is a good level of transparency.

            I am unsure why you would think that NAT is in a dire financial position just because they were appealing for donations Samuel, but then you do like to greatly exaggerate.

            One has to wonder if you rely solely on PN and newspapers for your information, but then again your gut reaction is generally your guideng light – seems to me you are severely constipated & require a good purge!

          3. Samuel B. 9 Jul 2012, 2:05pm

            And who are you to deem the NAT’s accounts to be in good order?

            I never said they were not a well managed organisation.

            That does not mean they are not short of a few bob and transparency is required for us to know this home-testing malarkey is being impartially pushed by NAT with no backhanders (aka bribes) in play.

          4. Anyone is able to form an opinion based on looking at the said accounts – just because you either don’t bother to look or are unable to read a set of accounts is beside the point. I am entitled to form an opinion based on the information provided in said accounts.

            I am also in trhe process of contacting NAT to make them aware of your wild accusations, it really is time that you are prevented from making such accusations without providing any evidence to back them up. I am also taking further counsel on your overall remarks relating to HIV charities such as THT.

            I suggest you also take counsel as you may well need it!

          5. Good to hear. W6.

            Some counselling could do you the world of good!

          6. Oh dear Samuel – I think you have made a mistake with regard to my use of the word counsel:

            (The legal system in England uses the term counsel as an approximate synonym for a barrister-at-law. “Counsel” is used to refer to a barrister who is instructed on a particular case. It is customary to use the third person when addressing a barrister instructed on a case: “Counsel is asked to advise”)

            ……………as opposed to the word Counselling – which can take many forms.

            I suggest you go back to school as it seems HIV is not the only subject area in which you are woefully lacking. This is confirmed by your copy & poaste from the pages on the Life or Meth site – clearly you like to cheat & plagerise the work of others as you do not have the ability to produce your own work.

          7. So now you’re a legal “expert”, eh, W6?

            Oh pur-lease!!!!

            So, the THT are going to track me down because I dared to speculate how Mr. Partridge scaled the ranks so quickly, and repeated accusations of mismanagement that have been reported in the national press and in the public domain for years, without any action taken?

            What exactly are you scared of, W6?

            The possible truth getting out, and your cosy world view and the delusional head space you occupy being shattered?

            People like you are society’s prison wardens, because you would prefer the public to believe everything they are told about how their money is spent and to never doubt the motives of those in authority.

            What a spineless creature that makes you, W6:- and totally in synch with the Dalek-like grating of your ever loudening rants.

            I would WELCOME this debate being blown wide open and the points raised here brought to more people’s attention, but very much doubt it because they want it buried and forgotten.

          8. Show me one sentence that I have copy and pasted from elsewhere.

            I don’t need to when these allegations have been public domain for years.

            Why would you not even concede it’s most unusual for a lowly office clerk to scale the ranks to the top of the pyramid in just 5 years?

            Most would describe that feat as pretty breathtaking yet you want to silence all debate on this and any of the controversies that have engulfed the THT, which after 30 years has the monopoly on the management of HIV services in the UK while failing atrociously in preventing HIV’s spread.

            Questions need to be asked as to whether THT and Sir Nick are fit for the purpose of monopolising HIV prevention funds and whether they have not wilfully or inadvertently created the problem of mass infection so as to make an industry out of providing the problem?

            And you STILL haven’t justified the THT’s real estate portfolio scattered across prime central London.

            Pray do tell me, W6, HOW is it a crime to ask these questions?

          9. “I would WELCOME this debate being blown wide open and the points raised here brought to more people’s attention, but very much doubt it because they want it buried and forgotten”

            GET OFF YOUR BACKSIDE AND DO SOMETHING ABOUT “THIS DEBATE” – You are the only person wanting such a debate, there is no appetite for these psuedo accusations you keep making, it is all in the past!!!!

            You call me spineless – you need to look in the mirror you are spineless & faceless, it is easy to be an internet troll /bully! Remeber what goes around comes around…………..HIV is never that far away from you Samuel, I would hate for you to be on the other side of the fence one day, the risk is out there!

          10. “You are the only person wanting such a debate, there is no appetite for these psuedo accusations you keep making…”

            Where’s your evidence to support this view, W6?

            Is the appetite not there because people like you seek to suppress it by shouting out people who do raise such thorny issues about past misdemeanours?

            What are you trying to cover up?

            Life or Meth is widely hailed for its truthful and honest approach to tackling the crystal addiction and the AIDS Inc essay says it all, really, yet you trash it without providing any reasons why it is “dangerous”.

            Its testimonials page alone speaks volumes and is all I need to tell me that it works in encouraging people to quit this nasty drug.

            You say elsewhere that you pride yourself on talking to 2-3000 men on your HIV forum and that you value their anecdotal accounts.

            What’s the difference between what they say and what Life or Meth’s visitors say about how the site helped them?

            http://www.lifeormeth.com/#/testimonials/4515868976

          11. If people feel strongly enough about something Samuel they will be galvanised into action – where are the demonstrations outside THT offices, where are the debates going on elsewhere about this, why are you not networking with others of the same ilk to make change happen?????

            This is my evidence – nada, nothing, ziltch no one is interested Samuel except you. If you have proof that crimes have been committed then its game over for Nick Partridge or whoever else you think should be fingered. You are a faceless coward, who shouts loud from the sidelines but would never dream of getting stuck in & really helping others.

            Fine fine words mean nothing without fine actions. Instead of working 6 days a week to feather your own nest & that of your masters, give some community time back. You are a disgrace as a gay man, you shop no empathy or compassion & you are a total bully plain & simple………………

          12. “AIDS Inc essay says it all, really, yet you trash it without providing any reasons why it is “dangerous”.

            The infomation in AIDS Inc section is an out of date, HIV denialist site, which is politically motivated & anti-establishment. It does not provide any meaningful resource about HIV, it is about discrediting all the work that has been done in relation to HIV both here and in the States. This is why it is dangerous in my view.

            With regards to the testamonials there are not that many given how long the site has been going, many are annon -so taking a leaf out of your reasoning how am I to know if these are genuine entries or not. The forum I quote has only been up & running 18 months & the site it is linked to has proved to be a great success since it was launched. It provides current upto date thinking that is not politically motivated, it is a true resource that is helping many +ve individuals get on with managing thier condition.

          13. LOL, well do tell me, W6, who is actually still pro-establishment in these days of mass corruption and duplicity?

            Except of course those doing the conga aboard the massive gravy train named UK Plc at the UK tax payers’ expense.

            And therein I do believe, ladies and gentlemen, lies the rub and exposes W6 as the programmed “repeater” he is (ie. someone incapable of thinking or reasoning for themselves and only believes and recites verbatim anything they are told to believe from “official” – ie. establishment-funded – sources).

            Keep digging your hole, W6, it just keeps getting larger and larger…

  16. NAT state “Testing strategies must offer people real choices which meet their different and changing needs, support their rights and address the contexts in which decisions are made. Home sampling and self-testing for HIV could be an important part of testing strategies in the UK”

    All of this is laudable and encouraging testing, particularly of hard to reach groups is to be applauded.

    If the tests have reliability concerns then its pointless.

    If the patient is not supported then ensuring they make the informed choices to promote their and others good health can not be maximised – and the ethical aims of NAT and the public health benefits may not be realsied.

  17. NAT debate home sampling – if this is done in a controlled and safe randomised control trial that is fully evaluated then that is a great step forward to increasing choice for patients.

    However, the testing kit needs to be be either highly accurate or the RCT needs to have additional testing as part of the safety and ethics mechanisms.

    Current HIV home testing kits all have had concerns raised about their accuracy.

  18. NAT state “Manufacturers of any self-tests for HIV should be required to provide easy access to post-test counselling as an integral part of their testing service.”

    This is laudable – but only worthwhile if the test is accurate!

  19. NAT state “Further UK-based research is required on the acceptability of self-testing for HIV, the impact of self-testing on risk reduction behaviours and improving access into follow up care.”

    This is exactly what should be happening BEFORE any other action is taken.

    1. I think you will find that I have alluded to all of this very early on in the thread Stu…….as I said this particular article does not provide a full analysis of the NAT position on home testing, and has suggested that NAT have endorsed OraQuick when clearly the have not.

      I think I will leave it at that as I do not wish to get into a tit for tat style exchange, I am very comfortable to disagree with your opinion on this matter Stu, as I am sure you are if mine.

      1. I think you will find we agree on more than we disagree. However, I profoundly disagree in making any steps forward on home testing (or indeed home sampling) until carefully consdiered, controlled and evaluated RCT based evidence from the UK is available.

        Patient safety is paramount.

  20. There are concerns about the efficacy and safety of the results of the HIV home testing kits on sale in the Netherlands – and until there is a reliable test, then we should err on the side of patient safety in the UK. Perhaps, examine how we would introduce safe home testing in the UK if a safe kit is developed and try to plan to deal with some of the consequences of home testing eg anxiety, misunderstandings and lack of immediate support. However, until the test itself is safe – it would be irresponsible to introduce it in a home environment.

  21. Some further reading on this subject, which highlights some interesting & concerning aspects of home testing:

    http://www.aidsmap.com/HIV-home-tests-how-will-they-be-used/page/2421108/

    1. A reasonably fair article (as I would expect from Aidsmap). In my clinical practice patient safety is paramount, so it will not be surprising that for me – in this article – the important aspects are:

      “HIV testing is not a matter of poking the person, sitting quietly for 15 minutes and then sending them on their way without any other discussion, … While testing is going on, there is a dialogue about why the test is being done, what the test is for, what the results mean, safer sex practices and referrals to other services. Moreover, there is considerably more talking should the result turn out to be positive. Many feel that this personal, direct discussion cannot be replicated with a pamphlet, which may or may not be read and understood.”

      “Some people fear that the limitations of the test will not be fully understood. In the trial that led to the test’s approval, 7% of people who really did have HIV received false-negative results. Moreover the test has a considerable window

      1. period – a negative test result is not considered accurate if a risk has been taken in the previous three months.”

        ““The failure of HIV testing is our poor linkage from testing to care,” he said. “This failure is present in pretty much every approach to testing, with many, many testing programmes not even considering linkage to care a priority – their responsibility ends with testing, counselling and perhaps, a referral … Self-testing, by its nature, will only link people to care in passive ways … ”

        The report doesnt even address the concern of inaccuracies – but there are enough concerns expressed in the report to lead me to consider that home HIV testing currently has more hazards, drawbacks and potential dangers than it has benefits.

        1. Stu

          We all have our different perspectives based on our experience (yours is clinical practice) mine is from that of an HIV +ve community advocate. One of the concerns that struck me in the article I refer to is that of home testing being used to screen sexual partners – this is something I had not considered & this gives me cause for concern & needs to be addressed. That said can we always factor in the “human elelment” where home testing is not used as it is intended. There are other examples such as patients taking half the prescribed ARV’s to reduce drug levels to a minimum, or giving thier negative partners Truvada before & after sex to reduce transmission risk.

          Until there is less stigma around HIV & testing becomes routine then we will always see examples where prescribed drugs, testing devices will be abused by the few. It would be a shame for this to prevent those who would benefit from home testing being denied that choice.

          1. It would be a shame if HIV testing itself was undermined by introducing a scheme which is unsafe, inaccurate and fails to support the patient.

            You seem to concentrate on the condition – I concentrate on the patient.

          2. Perhaps you should reacquaint yourself with HIV community testing & the shift away from opt in testing models to opt out models. The level of pre testing support has changed sifnificantly, & from my forum experience I am also concerned about the level of after test / initial Dr Consultations for newly diagnosed individuals. I think home testing is only one step removed from community testing – perhaps you do not think this concept is safe etc?

            I am unclear what you mean when you say “You seem to concentrate on the condition – I concentrate on the patient”. I do not consider an individual who takes an HIV test as a patient, unless they subsequently test positive & access care.

            How often have you been involved in the care of HIV positive patients in a sexual health /testing / clinic setting Stu? Your last comment smacks at a cheap remark, from which I will draw my own conclusions!

          3. W6

            That does not become you the cheap shot you made.

            When I worked in a primary health setting as an ECP – sexual health matters including community based testing for HIV were issues that all clinciians had to be able to deal with. Post test counselling and support was not usually my domain, but I have couselled many patients pre test – some of whom declined testing, some of whom agreed to testing, some of whom agreed to seek support from another professional with more training specific to their needs.

            I consider anyone who requires therapeutic testing or intervention to be a patient – you might not, it might be mere semantics to you. However, for me it is the individual who is important and their safety, choices, needs and support.

            Community setting testing is much safer than home based testing – for a number of reasons a) testing kit used, b) face to face contact and ability to recognise anxiety/stress concerns and other possibly unrelated issues that might require addressing

          4. c) ability to counsel for other medical concerns eg other STIs, issues with IVDU etc d) opportunity for either another person to facilitate in the test (ensuring integrity of the sample and aseptic technique) or for guidance from someone with experience etc etc

          5. Likewise Stu

            We both have very differing views in home testing – I see the advantages & believe that some of the objections both yourself & Elaine can be overcome – I have a can do attitude in life & it has served me well.

            You may wish to err on the side of caution, but I am firmly convinced that home testing may help reduce the undiagnosed HIV positive fraction which has remained unchanged in 10 years.

            I make no apology for supporting NAT in their quest to keep home testing on the agenda – as for OraQuick we will have to wait and see, but I find both your view & that of Elaine overly paternalistic and frankly outdated. HIV care in the UK is highly patient centred & needs to remain that way – Dr does not always know best, the patient usually does!

            That’s me on this topic

          6. Oh I agree the patient often knows best – but requires support to reach the best decisions when they are going through an anxious time and can only make the right decisions, for them, when the test they are basing (at least part) of those decisions on is accurate and safe. The home testing kits are neither.

            Patient autonomy is not enhanced by tests that are unreliable or unsafe.

          7. Belieiving in safety and accuracy is actually supporting patient autonomy.

            If you bother to read what I say I believe home testing might be a good thing if the kits are safe and accurate and there is a good system in place that has been evaluated that supports the patient.

            I am entirely for patient autonomy – so your claims that I am paternalistic is bogus. I am for safety and supporting patients in having their own choices. Those choices are damaged when the system you wish to introduce is inaccurate and unsafe.

            You perhaps can not see that because your principle focus is on testing – but it must not be at all costs.

          8. ……..and if you bothered to read all my postings then you would note that I have put forward my concerns about home testing, but have not got bogged down in this one decision made by the FDA.

            I have clearly explained why I think a different view will be taken here in the UK towards striking a balance between the concerns raised & the potential for home testing to be an important tool in the future.

            You will note that in one of my comments I have clearly stated that the debate around home testing has a long way to go in the UK. From the stance both yourself & Elaine are taking it seems you expect home testing to become legal in the coming months.

            This is not my interpretation of the situation or the suggestion that NAT have endorsed OraQuick as a product. NAT have a good track record on issues such as these & the should be supported in my view for the work they do.

            That is me done here – except to say show some backbone in relation to Samuel he is making a fool of you!

          9. W6

            I have already responded to your prior comments, stating that I am have not commented on some of the issues where I have agreed with you. If you really want me to go through and say – yes, I agree – I find that sycophantic. I have also said that there are more issues where we agree than disagree – you did not comment on that either.

            So, moving on, I am not fixated on the FDA (in fact perhaps only one or two of my many comments on this comments discussion have been about the FDA – for you to perceive otherwise is strange). The vast majority of my comments – as far as I can see – are very clearly about concerns about UK patient safety and the integrity of HIV testing in the UK.

            I certainly do not expect home testing to become legal in the UK within a few months – it is not safe and no responsible regulator would authorise an unsafe model. It is precisely because I do not think it will become a viable model in the near future in the UK, that I make these comments. Note (as I

          10. have repeatedly said) if a safe method which supports patients/clients becomes available and is evaluated in the UK – then I would support it.

            Because I oppose the impression that NAT are giving on this issue (and many professionals either directly or indirectly involved in HIV issues concur with my view) does not mean I do not support NATs general approaches.

            I think I am showing backbone here, W6 – standing strong on my principles of clinical safety and patient choice. I am disappointed that safety appears to be a secondary issue to you.

            As for Samuel, there have always been areas I agree with him – like there are issues I agree with you about. There are also issues which I strongly disagree with Samuel fervently and repeatedly (and to which he has offesnively and beligerently tried to malign me). I doubt Samuel will ever be a particualrly strong ally of mine. However, that does not mean that I will not agree with him where I think his view is accurate (regardless of

          11. whether I agree with the background to his dec8ision making). There are issues on here where I do not agree with Samuel, and some I have commented on.

            Anyway, for me this issue is not about personalities – its bigger than me, you or Samuel – its about safety.

            The current situation is unsafe to regulate in support of HIV home testing in the UK. I would like research and advances to ensure that safety can be assured – until then I will vehemently oppose the damage to individual patients and the reputation of HIV services in the UK by inaccurate, unsafe tests that fail to protect and support those who may be diagnosed.

          12. Samuel B. 9 Jul 2012, 2:07pm

            Stu writes:- “That does not become you the cheap shot you made.”

            Cheaps shots not becoming W6?

            Oh but they do, Stu, they most certainly do…

          13. W6, how jolly dare you presume to tell Stu how to treat me?!

            How am I making a fool of Stu exactly?

            We happen to have a common stance here, out of which I have gained a significant amount of respect for his humanitarian concern.

            We don’t agree on many other things but I am prepared to say here and now that I regret the way I handled our initial encounters and humbly apologise for any hurt and offence I caused to Stu.

            Whereas before I regarded Stu’s prolific presence here as a monopolistic irritant I’ve come to regard his contributions as a reassuring constant among an otherwise largely transient coming and going of PN contributors:- an anchor point if you will.

            By contrast in the space of one forum you’ve been reprimanded for hurling cheap shots and warned to “back off” – and that’s before all the vitriol you have hurled my way.

            You are hardly well-placed to counsel others on how to address those you happen to disagree with!

            Is that the scientist/administrator’s way?

          14. What took you so long Samuel, but at least you have now openly acknowledged your disgraceful behaviour & offered an apology – if nothing else my comment has made you stop and think.

            I dread to think how many times you have been rebuked, and told to back off Samuel – I can recall this happening many times particularly when you were being so openly critical & deliberately goading Stu about the work the emergency services do.

            You have no shame Samuel, nothing but a nasty troll who deliberately uses provocative words to insight upset in others who contribute here.

            I will not take any lectures on you sunshine – you have shown yourself up on many many occasions.

          15. Samuel writes – “We don’t agree on many other things but I am prepared to say here and now that I regret the way I handled our initial encounters and humbly apologise for any hurt and offence I caused to Stu.

            Whereas before I regarded Stu’s prolific presence here as a monopolistic irritant I’ve come to regard his contributions as a reassuring constant among an otherwise largely transient coming and going of PN contributors:- an anchor point if you will.”

            (for the benefit of the readers Samuel drove Stu off these comments pages some time ago with his constant bullying – he is the resident bully boy, so be very aware Elaine, as Samuel seems to have latched onto you big time)!

            Such fine words -as I have stated previously actions are what is important here – Leopards & spots spring to my mind, you cannot be trusted with your fine words Samuel!

          16. “for the benefit of the readers Samuel drove Stu off these comments pages some time ago with his constant bullying”

            For the benefit of anyone who still gives a damn, the above is total hogwash.

            Nobody drives anybody off these boards:- people make their own choices.

            Stu elected to take some time off after a heated debate over a subject we did not see eye to eye over.

            Period.

            This debate clearly shows who the agitator here, who screams and bellows and attempts to smear others for raising issues he demands should be buried just because the happened years ago, notwithstanding the fact that that doesn’t somehow make them right just because they’re presumed dead and buried.

            By that logic, police would leave criminals who committed their crimes 20 years ago alone if new evidence of their crimes emerged years later.

            Would sort of a society does that yield?

            W6 has insulted and heckled others on these forums because of his fixed mindset that can only interpret facts from a science…

    2. Samuel and W6

      I am ducking out now because of your decision to move this debate from one focused on HIV testing etc to one about clashes of personality (past or current) between us.

      Before I do duck out, I think it is useful to give my personal perspective.

      Whilst W6 is correct in voicing his (and indeed my own) perception that Samuel did bully and harass me in the past on these comments leading me to leave the comments for a period, Samuel is also correct that the decision and choice to leave was mine and mine alone. I felt the alternatives was not acceptable and thus chose to draw a line and seek some calm by choosing to step outside of the aggressive situation that occurred.

      I accept Samuels apology. I would say in this discussion there are aspects of the debate that Samuel and I completely agree upon and areas where our opinions do not converge. Given past experiences I doubt if either Samuel or myself will ever fully be confident that things might not escalate (although I

      1. Thats what happens when you are staying at a friends house and your laptop goes into a update mode and you forget to change details as to your logon on here.

        The above message was from me – although where the second portion has gone, I have no idea.

        I will leave this now. I hope debate can be mature and dignified in future and stick to the points rather than personalities.

        1. I am very sure that Samuel will cease on this and make some claim or issue over it………………

        2. Fair comment Stu, and thanks for your informed contribution to this debate.

        3. Now perhaps Samuel you will realise that you are a bully and amend your ways – your are deliberately provocative with the words you use, and you do not understand the concept of compassion in relation to others.

          1. W6, you really do take the biscuit.

            I suggest you look up the dictionary definitions of “troll” and “bully” and hopefully you will get an epiphany about yourself.

            You evidently have little sense of self-awareness, so perhaps a study in introspection and a dash of navel gazing would help you shake of that Dalek casing that has consumed you on these forums and incurred the wrath of so many, and allow the feeble, frightened little human being inside to reveal themselves.

            The bully’s way is also the coward’s way, so not much chance of that!!!

          2. You carry on Samuel – you are a joke on these comments pages, the subject of ridicule. Stu felt bullied by you I have and continue to be bullied by you, it is you that needs to take your own advice.

            Now that is it from meon this particular comments thread. I suggest before the next HIV related topic you read up on up to date material rather than rely on the outdated and politically driven sources you currently use.

          3. Don’t Daleks self-exterminate when they realise they have been defeated?

            Just how many times has W6_Dalek screamed “That’s it from me” yet failed to self-destruct?

            Hopefully he’ll press the correct button this time and really will have squawked his last on here, but I ain’t taking bets…

  22. There seems to be an assumption that because the FDA have authorised one home testing device that the UK will follow suit. This is something that I do not subscribe to.

    I can think of several opinions & practices where the UK take a different view to that in the US relating to HIV.

    Truvada as PrEP is a most recent example – BHIVA have called for UK based RCT’s as they feel current evidence is not strong enough to recommend Truvada as PrEP. In the most recent BASHH conference there was a 56% vote against the use of Truvada as PrEP.

    A new ARV (Quad pill) has been licensed in the US, yet there are current trials on-going in the UK because of concerns related to adverse kidney events seen in RCT’s.

    From my experience of patient engagment programs I see no reason why a similar stance will be taken by organisations such as BHIVA, BASHH, HPA etc. with regards to home testing.

    1. The way this article has been written suggests that NAT fully endorse OraQuick – this is not the case as is demonstrated in their action plan for HIV testing. NAT is quite right to raise the issue of home testing, unlike other commentators I am confident that all stakeholders will ensure that any decision to authorise home testing will be evidence based by studies conducted in the UK. This is my experience to date when considering HIV in the UK. As I have stated previously we take a more measured approach & carry out many studies. We should not foget that London is the home to several highly respected HIV centres where a great deal of research is undertaken, much of which then filters into evidence based decisions.

      I beleive home testing is a novel approach & I have expressed my concerns & suggested that more research is required (expansion of home sampling trials as an example). All testing scenarios have limitations & these need to be managed to ensure the best outcomes.

  23. Earlier, W6 writes:-

    “the Sunday Express is well known for its investigative journalism is it Samuel? I have searched high and low to clarify your claims. Whilst it may have been reported, was it accurate, have these allegations been proven?

    I’ve been unable to find anything to confirm these allegations, if you can provide the reference please do, as I’m interested to get to the truth here.”

    Very well, W6, here is an extract from gay rights activist John Lauritsen’s ‘The AIDS War’ published in the 1990s (how we forget…):-

    “(AZT Pimp) The episode of the brochures is by no means the first indication that nick Partridge is a puppet of Wellcome. According to sources in London, he toured Australia at Wellcome’s expense, staying in first-class hotels and receiving a handsome honorarium in addition to his more than ample salary. Wellcome has planned for him to tour the United States this Spring. In addition, Partridge has control of the THT Hotline, which, according to a pamphlet of…

    1. the AIDS Liberation Front, “only gives out information sanctioned by him via his Wellcome masters.

      The Sunday Express followed up on 29 December 1991 with a front-page story, “Call for AIDS charity probe”. nick Partridge responded on 31 December by mailing a “Dear Colleague” letter to 1,000 supporters. Under the headline, “The Sunday Express is making mischief”, Partridge claimed that the Sunday Express story was “based almost entirely on claims made by a volunteer who resigned from the Trust on 11th December, just before a disciplinary hearing was due to consider complaints of gross misconduct against him.

      On 27 November 1991 Michael Murphy was suspended by nick Partridge, who accused him of having “leaked” information to a reporter for The Independent. Murphy was summoned to a private meeting before the Trust’s personnel committee on 11 December. But after he was denied access to independent advice, Murphy decided the hearing would not be fair, and he resigned. “There is…

      1. absolutely no way that I would be prepared to subject myself to such a kangaroo court. The management clearly have something to hide.

        Signs of THT’s financial irregularities began to surface when the Group Leaders Committee questioned the organization’s finances at an Extraordinary Staff Meeting held at the Trust’s Gray’s Inn Road headquarters on 28 October 1991. Nick Partridge announced that owing to “financial difficulties” eleven people would need to be laid off. The organization’s financial policies were then questioned, in particular payments totalling £115,000 made to an outside fund raiser, Andrew McDonald.

        The current charges of fraud and corruption revolve around Nick Partridge, the Acting Chief Executive. He receives a salary of £31,500, which by English standards is enormous. Partridge joined the Trust in 1985 as a clerk, with previous job experience as a copy boy for a news agency. Signs of THT’s financial irregularities began to surface when the Group Leaders Committee..

        1. questioned the organization’s finances at an Extraordinary Staff Meeting held at the Trust’s Gray’s Inn Road headquarters on 28 October 1991. nick Partridge announced that owing to “financial difficulties” eleven people would need to be laid off. The organization’s financial policies were then questioned, in particular payments totalling £115,000 made to an outside fund raiser, Andrew McDonald.

          The current charges of fraud and corruption revolve around nick Partridge, the Acting Chief Executive. He receives a salary of £31,500, which by English standards is enormous. Partridge joined the Trust in 1985 as a clerk, with previous job experience as a copy boy for a news agency. Signs of THT’s financial irregularities began to surface when the Group Leaders Committee questioned the organization’s finances at an Extraordinary Staff Meeting held at the Trust’s Gray’s Inn Road headquarters on 28 October 1991.”

          These allegations were published globally and never challenged in law.

          Well, W6?

          1. For one minute I actually thought you would come up with something new…. You have posted this information before Samuel, nothing I read here suggests that anything was ever proven – it s all suggestion and allegations. All this is alleged to have happened 20 years ago, how is ths relevant today?

            Try again as you have well and truly failed in this assignment!

          2. The book also observes:-

            “The point, which Taylor misses, is whether Partridge’s background was sufficient to warrant his rapid rise in the organization, as well as his present salary, which by the standards of British working people is extremely high, regardless of what THT’s (highly paid?) management consultants may say. Taylor does not address the extremely serious charges I raised concerning Partridge’s ties to Wellcome, his role as a “pharmaceutical pimp” for AZT.”

            The point being that the official story goes that Partridge started off at THT in 1985 as a lowly post boy and somehow got promoted to Chief Exec with an accompanying exorbitant salary (by 1991 terms) in just SIX YEARS!

            No, I don’t quite comprehend that either, which leads John Lauritsen to conclude that THT’s original mission was usurped early in its history when big pharma and mega bucks came calling.

            Again I ask who has really benefited from the THT’s failed approach to HIV prevention and bureaucratised approach?

          3. Why not go the whole hog Samuel and become an HIV / AIDS denialist – of course the book you are quoting from would have no financial vested interest what so ever!

            Enough of this clap trap I will take my chances with the position NAT take on home testing – and I look forward to the next debate on this subject, in the mean time Samuel I suggest you get in touch with your new found pal Elaine as she certainly could tutor you -sadly I think she would have her work cut out!

          4. And now it all fits together…………………..John Lauritsen is an HIV / AIDS denialist who thought that poppers caused AIDS. The cat is out of the bag Samuel, you are an HIV denialist of sorts; I have suspected this for a very long time, very pleased that you have finally outed yourself. The majority of AIDS denialists have past on, they would never allow their death certificates to suggest that their demise was as a result of HIV / AIDS as they refer to it in the US.

            I actually feel quite sorry for you I really do – but each to thier own, if only you had the balls to have the courage to be upfront about your ideology, but there again it is easier to hide behind a faceless avatar & make anonymous attacks.

            Coward!

          5. Samuel B. 9 Jul 2012, 1:50pm

            Forever jumping to the wrong conclusions W6.

            For your information the extracts from John Lauritsen’s book were copied from the naturepedia web site:- a well respected site I might add that respects ALL views.

            I have never read Mr. Lauritsen’s AIDS book but respect his work as a tireless activist for gay rights.

            That he espouses the theory that poppers are in some way correlated to HIV infection is his right to do so.

            I do not necessarily agree because I prefer to keep an open mind on all issues that have not been conclusively proven one way or the other.

            Jus as I don’t necessarily disagree with the orthodox opinion that the HIV virus leads to AIDS, or that global warming is manmade.

            There are arguments in favour of all these hypotheses and I won’t rule any out just because the consensus has decided what is fact without conclusive evidence.

            The extracts quoted provide some background to the information you demanded details of.

            I provided it but still not good enough for you,

          6. You can wriggle all you like Samuel, most of the language you use in relation to HIV can be found on the Life or Meth website operated by Gary Leigh in the “Aids Inc” section which quite frankly is a dangerous attempt to discredit the various agencies involved in HIV both here & in the US. Whilst you are entitled to your views the readers of these comments pages should be alerted to your ideologies.

            The fact that you are so ready to quote authors without even reading said books means you are just clutching at straws to try and discredit HIV care & treatment in the UK – this is why I say you are an HIV denialist of sorts; this combined with your irrational fear of HIV suggests to me (& I am sure others) that you are unable to present a well balanced view. Your ideology is dangerous and I for one will continue to provide the necessary balance to ensure HIV denialists such as yourself are discredited. As a gay man you should be totally ashamed of yourself, you are a disgrace!

          7. Interesting that you suggest you like to keep an open mind about things – yet you seem to have a very clear view on HIV charities & clearly have been taken in by the likes of Gary Leigh. You continue to make very serious allegations about HIV charities which you are unable to substanciate, as I say you are sailing very close to the wind & I will take all the steps I can to make sure that these allegations are brought to the attention of said charities.

            PN really need to have some form of moderation that has some teeth because individuals with your views are dangerous, there really is no other word for it.

          8. Samuel B. 9 Jul 2012, 8:10pm

            W6 writes: “most of the language you use in relation to HIV can be found on the Life or Meth website operated by Gary Leigh in the “Aids Inc” section which quite frankly is a dangerous attempt to discredit the various agencies involved in HIV both here & in the US.”

            The information on Life or Meth has been in the public domain for years and the site has been featured in much of the gay press.

            Perhaps you ought to be asking:

            a) Why people like John Lauritsen and Gary Leigh go out of their way to expose the truth (certainly for little or any monetary gain I would venture)

            b) and why neither has been sued.

            W6, can I assume that were you in gainful employment it would be as an administrator of some kind, where data and figures ruled over compassion and empathy?

            I ask because you approach subjects such as this one with the ruthless efficiency of a Dalek, certainly not a heart-centred human being.

            Your faith in statistics and the status quo is unwavering.

            Hasn’t it occurred to…

          9. Samuel B. 9 Jul 2012, 8:22pm

            by now that many MPS no longer serve their constituents but the interests of the corporations (and fiddle their expenses to boot)?

            That bankers serve their own interests, not their customers’?

            That the liverpool care pathway is now being used on elderly NHS patients whose conditions are not critical?

            Etc. etc.

            W6, this is a cruel world and if there were no people prepared to put their neck on the line these outrages would never have been exposed and reported by the British press.

            Yes, I’ve read AIDS Inc on Life or Meth, just as I read Gary Leigh’s breakthrough HIV articles on PN which prompted others to speak out and demand better standards of HIV prevention from our funded charities.

            I found them to be meticulously researched with plenty of cross references.

            Most importantly of all, I was struck by how the only people lambasting Gary Leigh’s work were the HIV charities THEMSELVES (oh quell surprise!!!!).

            So not at all surprising to see you get your own cheap shots in.

          10. Well I can agree on this statement you make “if there were no people prepared to put their neck on the line these outrages would never have been exposed and reported” when have you ever put your neck on the line Samuel for anyone? You are happy to sit behind your faceless avatar & do jack all about anything – all bluster & no action. Most days of the week I helping others fight woefully inadequate organisations such as Local Authorities, I work hard protecting the rights of disabled people, empowering others to not put up crap, over paternalistic Dr’s……the list goes on, but of course you will ridicule these efforts as you have in the past.

            Every day I do something to help another person – I have just spent 40 minutes on the phone talking to a friend who has had dreadful housing problems; yet he will now be moving into a flat in 3 weeks time – I did that for him, so you can claim all you want that I have no compassion, for everyone of you there are 3 who can vouch for my efforts…

          11. Samuel B. 9 Jul 2012, 8:36pm

            So by all means bring my postings to their attention, why don’t you?

            Nothing I am sure they are not already aware of.

            Perhaps Nick would like to explain his upward trajectory within THT twixt 1985-91(we would all be fascinated to know how he did it).

            And might he care to explain THT’s entanglement with various pharmas over the years?

            Or the “allegations” of financial impropriety that were made as soon as he took the helm?

            Wouldn’t it be a good opportunity for him to set the record straight and put paid to these nasty whiffs once and for all?

            Finally, last time I checked Life or Meth had notched up 2.5 million visitors.

            Not bad for a voluntary resource set up to help gay men afflicted by crystal meth because THT refused to step in years ago when they were warned a meth epidemic would hit London without pre-emptive action.

            Oh, and one which peddles lies, of course…

          12. Samuel B. 9 Jul 2012, 8:46pm

            W6 writes: “Most days of the week I helping others fight woefully inadequate organisations such as Local Authorities, I work hard protecting the rights of disabled people, empowering others to not put up crap, over paternalistic Dr’s…”

            In which case I thoroughly applaud you, W6:- sounds like you are a pretty amazing and caring guy, and I’m sorry if I don’t always get that impression from your postings.

            You ask what do I give back, and I would not expect you to believe me here but I do my bit to ensure I leave this mortal coil giving back to others as much as I took out of life, as I thoroughly believe in the laws of karma and energy being a force that has to be perfectly balanced and repaid where it is not.

            The difference between you and I is that I do such work quietly and don’t seek approval.

            That isn’t to criticise you in any way:- it’s just who I am.

            Again, kudos to you W6, and maybe now we know each other a little better we can exercise a little humility towards each other?

          13. ………you know nothing of me what so ever, so don’t preach to me about compassion.

            Gary Leigh, like you hasan irrational fear of HIV, refering to people who are HIV+ as HIV’ers – it is all conspiracy theory, heresay & allegation. His site is dangerous, & I note they are even asking for donations – where does that money go?

            I beleive in taking practical approaches in my ideologies, rather than spouting rubbish that bears no resemblence to the truth about HIV care & treatment in the UK. It is obvious you are unable to understand much of the rubbish this guy spouts because your understanding of the subject matter is non-existant as you constantly prove on these comments pages. You think you understand but you are totally out of your depth. You keep referring to AZT as if it were still in use in modern HIV medicine – it isn’t it is a very old drug & we know the terrible side effects it has caused. You need to get upto date, then I might have some respect for you

          14. Sadly Samuel your acknolwedgment of my efforts do not convince me that your intentions are honourable -I have seen the way you treat others on these comments forums, & what I have seen is frankly quite ugly. The biggest effort you could make is to get yourself upto date with current HIV care & treatment in the UK & take a more balanced view on things, rather than be taken in by frankly HIV denialist websites.

            Crystal Meth is a product of the States, it is a big problem for gay men in relation to HIV – but you have openly criticised any efforts to deal with the more underground aspects of gay culture. Organisations like THT are not perfect. There are lots of people working in the organisation to make it better. You need to look beyond whatever problem you have with Nick Partridge & acknowledge that an organisation is not just one person – they need to do more to engage gay men, but gay men also need to do their bit, as do the rest of he population with regard their sexual health.

          15. The thing that upsets me most about your posting Samuel are that often your ionformation is out of date -it concerns me that vulnerable newly diagnosed +ve people could be reading your postings & get the wrong impression of what it means to be +ve in 2012. I really don’t care what you think of me – but you should think about others who are vulnerable. Someone who is not sure about taking an HIV test could read your accounts of testing & think that’s not for me – perhaps you are not aware of how your postings sometimes read. You write with authority but sadly in relation to HIV your knowledge is very poor.

            We have had discussions on this comment page about “unsafe” compassion – this is how I see your efforts to discredit the advances that have been made in HIV care & treatment. Just as Stu & Elaine are passionate about patient safety I am passionate about those at risk of HIV, those newly diagnosed & those who are disempowered by lack of information.

          16. Samuel B. 9 Jul 2012, 9:14pm

            Hang on, W6, Nick Partridge is the Chief Exec of THT:- his decision on all matters is final and change can only be exacted from the top!

            Couldn’t that perhaps explain why there have been problems within and a widely vocalised dissatisfaction against THT throughout his 20-year watch?

            Which is why some transparency on his fast ascension between 1985-91 would add some clarity and stop endless speculation about whose interests THT serve first and foremost.

            We’re clearly never going to see eye to eye when you insist on being close-minded on all issues that do not conform to the official line, or the group speak consensus that governs how HIV prevention is handled.

            For you to rubbish a web site that has been covered, I believe I’m correct to say, in all the gay media while branding those who agree with its stance as having an irrational fear about HIV says it all.

            I for one have no reason whatsoever to fear HIV as I do not put myself in a position to acquire it, thank you very much!

          17. Samuel writes “For you to rubbish a web site that has been covered, I believe I’m correct to say, in all the gay media” – would this be the same gay media that you were criticising earlier in this thread Samuel??? You are full of contradictions you really are. If you think that one person in an organisation makes every decision then you are sadly mistaken. You may have a particular view of corporate life, but I can tell you there are plenty of volunteers & paid staff who will argue their case within THT. I do not see a huge interest from gay men in organisations like THT, GMFA or NAT. There is a feeling amongst younger gay men that they are being over targetted in relation to sexual health & HIV, they feel discriminated against “why are we (gay men) always targetted when our straight peers are not” is one common theme I hear.

            For most they know said charities exist & perhaps they may volunteer, but most do not come in contact with said charities until they need to.

          18. “I read Gary Leigh’s breakthrough HIV articles on PN which prompted others to speak out and demand better standards of HIV prevention from our funded charities” this is exactly my point, speaking out is one thing, to make change happen you have to get involved & make change happen. All these people who “speak out” where is the evidence to say that they have put their words into action. If you want to see change in the various charities, become a member, get elected as a trustee, shape the organisation from within.

            One thing I admire Gary Leigh for is that there is tangible evidence of what he has done (not that I agree with most of it) actions to me are what is important. I am concerned about the health & social care bill & the effects on HIV services – I attend patient engagment groups, I make my voice heard. There is no point me bitching about it & doing jack all. I am a practical person Samuel, I have a can do attitude & very rarely take no for an answer – I wish I could do more!

          19. Samuel B. 9 Jul 2012, 9:52pm

            W6, it is you who are clearly misinformed on many points.

            Regarding Nick Partridge, as Chief Exec he is responsible for everything that occurs under THT’s name:- the buck must stop with him.

            I know of no other organisation, let alone charity, that has managed to maintain the same Chief Exec over 20 years of failure and public criticism.

            It appears he is either Teflon-coated or else there is a degrees of protectionism going on.

            It is your opinion that my information is wrong:- similarly I would accuse you of being blinded by your loyalty to data no matter whence that data came.

            As I said, I look at things with an open mind and think outside of the box, whereas you believe everything you read and are told by associated reports and stats data, be it compiled by academics or authoritative bodies that rely on, or whose palms have been greased by, big pharma.

            You won’t entertain anything that challenges the status quo’s pre-agreed consensus, and that, frankly, is the coward’s way.

          20. “I for one have no reason whatsoever to fear HIV as I do not put myself in a position to acquire it, thank you very much!” well I do hope that if you engage in oral sex that you always use condoms, someone who is in the primary phase of HIV infection is likely to be 28 times more infectious than when they have produced anti-bodies to HIV. The tonsils are designed to catch viral particles & bacteria, there only needs to be another STI such as clamydia present in either partner & the odds of HIV transmission are greatly increased. From my forum work I see more & more anecdotal evidence that oral sex has resulted in HIV transmission. Yes the stats per exposure of transmission are around 0.04%, but 5% of all HIV infections amongst gay men are thought to be from oral sex.

            HIV is a problem for everyone, especially gay men – most new infections come from those people in the primary infection phase this is why early testing is so vital – something you do not understand!

          21. “If you want to see change in the various charities, become a member…shape the organisation from within.”

            That’s easier said than done, W6, as various people who have attempted to do just that and challenge the HIV sector’s rigid PC approach have found.

            I know someone who did just that (I won’t say which charity) but for his efforts he was ridiculed, humiliated, and constantly jeered by his fellow workers.

            Ok, they weren’t asked to leave but the charity didn’t have to because it more or less bullied the poor guy out of its Effra Road premises.

            Just like how a Boyz journalist was heckled, jeered and virtually spat at when he was invited to a CHAPS event to emote on the need for harder hitting HIV campaigns.

            He was lured to said event simply to be ambushed and verbally assaulted for his stance.

            If you join these set-ups you’re expected to toe the line and not question HIV sector policy – or else!

            Were you not aware that open thought is forbidden in the HIV sector, W6?

          22. “As I said, I look at things with an open mind and think outside of the box, whereas you believe everything you read and are told by associated reports and stats data, be it compiled by academics or authoritative bodies that rely on, or whose palms have been greased by, big pharma.”

            You are selective about what you wish to be open minded about – as I have told you many times my information comes from a variety of sources, but over the past 18 months I have had the great privilage to gain the insight of over 1500 +ve people up & down the country who share thier stories, information & exchange of best practices. This is all the evidence I require to know the truth as you put it about HIV care in the UK today. I would say about 95 % of these people would say your information in out of date & does not reflect their experiences. People with 30 yrs experience of living with HIV to newly diagnosed, they would challenge your every word – are they all wrong? I think not!

          23. “That’s easier said than done, W6, as various people who have attempted to do just that and challenge the HIV sector’s rigid PC approach have found.” Change does not come easily, but I would have expected the person you know to have made a claim against said organisation for bullying. I cannot comment on the other case you mention. I have to ask were these recent events?

            You always seem to post information that is at the extreme ends of things – you sensationalise often; surely if these organisations are acting the way you describe then their employees will be constantly in the tribunal courts? I do not beleive that HIV charities have problems recruiting so I have to question if your accounts are widespread or very isolated incidents. Either way the individuals involved should have acted against such events which are totally unaccpetable. Again perhaps we come back to the lack of action taken by individuals to change things, in this case bullying.

          24. W6, you speak of how I treat others in other forums, but your dialogues with several people in this very discussion have done you few favours.

            Indeed, was it not Elaine who told you to “back of” because of your “my way or the highway” attitude that prevails throughout many of your discussions?

            A refusal to accept opposing viewpoints as having any validity whatsoever?

            The best moment has to be where you assumed Elaine to be American because her opinions differed so greatly to your own, and of course she was able to hoist you by your own petard by stating her NHS credentials.

            Yes, we have waged a few wars on here, but also on occasion we have responded to each others’ opinions with respect and humility:- still differing in our viewpoints but being polite about it.

            I have called for an armistice on several occasions only to be rejected by you, so it seems that you prefer pitched battles over reasoned and restrained debate.

            Or are you prepared to prove me wrong?

          25. “surely if these organisations are acting the way you describe then their employees will be constantly in the tribunal courts?”

            Actually he was a volunteer offering his time freely, which somehow makes his treatment all the more despicable.

            It is well known that most such organisations run a protectionism racket among employees, which is how bad management and corruption are allowed to occur and run rife.

            Why?

            Because most people would prefer to look the other way and pretend it isn’t happening rather than risking their job and speaking out.

            That’s also generally why only those who are known will play ball are employed in the first place and will have been heavily about their political beliefs and loyalty qualities at application and then interview stage.

            Of course a worm will occasionally turn, but admittedly for real change for the better to occur a lot more whistle blowers need to exercise their consciences and come out of the wood work.

          26. “W6, it is you who are clearly misinformed on many points” please do highlight where I am misinformed Samuel, against what hard evidence?

            I would challenge you to read any information I have posted in relation to HIV & provide an example of where I am mis-informed or as you often accuse me of providing mis-information. I may be mis-informed based on your rather obscure world view, but I deal in reality not “blue sky thinking”. I operate in the constraints that are present & where possible try to change those constraints. We have to face it that there are some things we cannot change. Quite frankly Samuel I think so far you have lived a very uneventful unchallenged life – who would have thought I would be homeless 4 yrs ago, I didn’t, but it happened through no fault of my own making. Life is hard, you seem totally oblivious to what I call real life, you appear to live in the perfect bubble with not a care in the world & have the luxury to produce fine words but never act on them.

          27. …………and I am sure I could find many many other examples of your absolutely disgusting behaviour towards other regular contributors. Let us not forget the incident with Stu – I cannot for the life of me understand why he even gives you the time of day. I have a line & once someone has crossed it that is it for me. It doesn’t happen very often, but you Samuel crossed that line long ago & there is no going back. If you want me to back off then it is quite simple, learn about modern HIV care & treatment, get involved rather than work 6 days a week so you can flash the cash – give some of your time to the area you seem so passionate about.

            As I have said many times put up or shut up, to me you are pseudo-activist, plenty of bluster but no action zilch, nadda – there are those who campaign & receive no help or financial reward, they have a legitamate right to be vocal because they are doing something to make change happen, ask yourself what you are doing!

          28. And would you be the worn that turns Samuel? It seems to me that you wouldn’t – you have a cosy job, where your boss is very understanding (your words) what happens if & when that changes, will you stand & fight your corner or just walk away. I have been the thorn in the side of many a superior, I have challenged, sometimes come off the better, sometimes worst off, but the point is I will not be pushed around, as is seen in these comments pages – you often make reference to reds & greens, they mean nothing to me. I do not come here to be popular, yet you are so fixated by this crude barometer.

            You were the first person I commented on when I joined PN, you were hostile then & you have become more hostile, is it any wonder that I have developed a combative approach, afterall it seems I cut my teeth on the master of combat. I read many of your older posting before my time & I see the same nasty way you treat others, maybe you cannot see it, but it is there for others to see.

          29. “I would challenge you to read any information I have posted in relation to HIV & provide an example of where I am mis-informed or as you often accuse me of providing mis-information.”

            Do you deliberately choose to ignore what I go out of my way to point out?

            Your information is only as sound and robust as the sources you glean that information from.

            And unless those sources are completely authoritative ad totally impartial and not working to a pre-agreed objective (ie. conditionally tied to funding, as so many universities, academics, researchers and indeed scientists today are), how can you possibly claim to be being properly and fully informed?

            There’s a lot to be said for trusting direct experience over what we’re told to believe by some trumped up academic or fund-chasing laboratory.

            But of course anecdotal evidence is anathema to those who regard as gospel the findings of our scientists and researchers who, like our MPs and bankers, are beyond being bribed or corrupted!

          30. “you often make reference to reds & greens, they mean nothing to me. I do not come here to be popular, yet you are so fixated by this crude barometer.”

            Oh come on W6, if anyone has learned anything from tonight’s bantering it is only you or I as we are tucked away in this recess away from the main debate page, just the two of us.

            Yet that doesn’t prevent your comments automatically receiving two thumbs up as soon as they are posted.

            You cry poverty yet you appear to have three online- accessible terminals that allow you to accomplish this Svengali-like feat:- one to post your comments on and two others to administer the two thumbs up!!!

          31. I would refer to to my HIV forum involvement – are you prepared to suggest that over 1500 individuals up & down the country who share their experiences of living with HIV are wrong in their views. This is high quality anecdotal evidence even you cannot argue that these individuls do not provide a valid view.

            It s interesting that you favour US based info yet their HIV healthcare is poor, only 45% of those needing care regularly receive it. Outcomes in the US are poor compared to the UK, with many unable to get the best drugs & level of monitoring required.

            As a scientist I am able to form my own independent opinions on many HIV related scientific papers, I understand the basics of study design & epidemiology. I research from many sources & cross reference.

            More cheap shots re reds & greens, more assumptions about my financial situation etc etc.

          32. How do you ever form an opinion Samuel? Basically you are suggesting that no information in the world is safe from outside influence? To me your expectations are virtually impossible, there comes a point when an opinion has to be formed, just like your opinions on Gary Leigh, how do you 100% know that there is no vested interest somewhere in the chain of information he provides – you don’t it’s impossible in my view.

            I must be missing something very fundamental, perhaps you can explain, but to me it seems a very severe form of paranoia that you have no belief in RTC’s & well analysed data. Conspiracy theory seems to be your guiding light.

    2. To be fair, Samuel – not sure what the relevance of thsi is to home testing

      1. I agree, the safety of individual patients is not impugned by financial accounts. That is a separate issue.

        1. Samuel B. 9 Jul 2012, 1:58pm

          Me neither, but I did not enter this debate with this information.

          It arose from the natural progression of the debate and therefore I felt it warranted.

          And more questions do need to be asked about the financial ties between the HIV charity sector and big business to ensure that our interests and well being comes before profit.

          Isn’t that the gist of what everyone involved in this debate agrees, with the lamentable exception of W6 of course?

        2. At least the other contributors have been able to enter into the debate – unlike yourself because you know jack all on the subject matter & are unable to form an opinion – as a result you just revert to the default position of trying to discredit the likes of THT & NAT. Perhaps they should be alerted of your postings on this site, as quite frankly you are sailing very close to the wind in some of your allegations.

          Whilst we are on the subject of allegations – did you get anywhere about your allegation that I was providing advice on HIV medications on a previous PN comments page???? As I say you are a complete disgrace whyich has been shown many times on these very comments pages!

  24. http://sti.bmj.com/content/81/4/359.1.short
    “A case of a false positive result on a home HIV test kit obtained on the internet”

    http://heinonline.org/HOL/LandingPage?collection=journals&handle=hein.journals/hastlj46&div=31&id=&page=
    “HIV Home Testing – The Case for Regulatory Restraint”

    http://www.dailymail.co.uk/health/article-2054084/HIV-home-test-kits-incorrect-diagnoses-Government-watchdog-warns.html
    “Warning over illegal HIV home testing kits that could give incorrect diagnosis”

    http://www.thebody.com/content/art13799.html
    “In every case, the kits showed a negative result when used on a known HIV-positive sample — that is, when they should have shown a positive result. Using one of these kits could give a person who might be infected with HIV the false impression that he or she is not infected. ”

    Hence some of the concerns about safety and accuracy!

  25. Samuel writes about bullying:

    “For the benefit of anyone who still gives a damn, the above is total hogwash. Nobody drives anybody off these boards:- people make their own choices.”

    When people feel so bullied by the vitriol that Samuel serves up it is understandable why they feel they have to retreat.

    Samuel made some very hurtful accusations about the emergency services, made very personal remarks & showed himself to be the troll & bully he is.

    These comments pages are littered with his bullying tactics & he is known to many PN contributors who now just ridicule him -he is nothing but a troll!

    He is an HIV denialist who thinks stigma towards HIV should be perpetuated & he is a serial HIV charity troll.

    Thats me done on this matter until the next time he makes wild unconfirmed allegations.

    1. How am I an AIDS denialist exactly, W6?

      Unless you have evidence to back up this rash statement I suggest you retract it forthwith or I will be lodging an official complaint with PN HQ.

      Never once have I stated the HIV virus does not cause AIDS.

      How dare you?!!!!

      1. Do what you want Samuel – you have referred to me using many terms without any form of evidence. You are the joke of PN comments pages!

  26. As a post script to this story I have today received an email from NAT which has clarified two points that I put to them in relation to home testing:

    1. NAT never have or do not intend to endorse a particular product for financial gain such as OraQuick as featured in this story.

    2. NAT have not received nor intend to seek funding from OraSure Technologies.

    NAT recognise the importance that home testing has and are lobbying the Government to undertake further research in the UK.

    I am hoping that NAT will post thier position here on Pink News because I beleive the story as it was written did not provide the clarity of NAT’s position on home testing. I wonder if any other contributors have contacted NAT in relation to this matter – as I say actions speak louder than words!

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