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Home HIV tests ‘should be legalised’

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  1. concerned resident of E3 11 Oct 2011, 1:35pm

    hmm in two minds about this. If they were made available but printed with strong messages advising people to seek confirmation of results in clinical settings and giving them support numbers I suppose it would work. But I worry that out of the clinical setting both false positives and false negatives might increase.

    1. Very much in two minds on this one too …

      On one hand I am all for anything that will increase testing, awareness and assist in stigma reduction – which this could possibly achieve to some extent …

      On the other, for many the diagnosis of HIV is a traumatic time and many people have either no knowledge of the implications or their knowledge is enitrely out of date and therefore I feel it is better to have some support available to ask questions and get accurate and realistic information …

  2. These kits are very useful in countries like Singapore where there is no confidentiality of results in clinics and you get reported to the authorities if you have a positive result.

    So long as they are accurate they should be available.

    1. Out of interest, what happens when you do have a positive result in places like Singapore … surely there is the risk that some people have a positive “at home” result and then remain frightened to go and seek help? Doesn’t a system with a requirement to ensure confidentiality drastically reduce if not eliminate this risk factor (although it does present other risks from stigmatisation etc)

      1. They have been criticised by experts globally for their policy. Some people do leave it too late and have died. People get generic drugs from Thailand or Malaysia as there is no subsidy for HIV drugs in Singapore, they are excluded as a matter of policy, and are very expensive. Foreign residents risk getting expelled. People did go abroad to get tested, but these kits are now available for home testing.

        1. @Joe

          Interesting to hear and something I shall have to go away and research.

          However, in the UK HIV drugs are available on the NHS. There is a duty of confidentiality from all clinicians that is further reinforced in the areas of HIV and sexual health. There are support services available which can give honest and appropriate advice and guidance.

          Given that, I am more concerned about the problems home testing could bring to the UK than the issues it could solve in some locations more obviously. I do accept that in the UK there could be some benefits from home testing but not in the same league as the scenario you describe in Singapore.

  3. I think on the face of it it’s a great idea.

    Despite what people say there is still a stigma very much associated with going to the clinic to get tested – both for straight and gay men and women. This would enable people to feel much more confident in getting tested for HIV.

    Also, the tests themselves are quite simple to carry out.

    However, I’m concerned about two things:

    Firstly, if there was a positive result how this would play out in someone’s mind. At clinics there is someone on hand to give guidance and advice which a home-testing kit won’t provide in the case of a positive result.

    Secondly, however simple the kit is – it may still be too complicated for some and this may produce wrong results and have pretty serious consequences. After all, if someone believes they’re negative and starts barebacking a partner only to find that they’re not…

    1. @Menderin

      I entirely agree

      I think there are also a third and fourth problems.

      Firstly, if there is a positive test not only would there be a lack of support for someone using a home test, but would the person then seek clinical support if the test was positive or would the stigma move the barrier from being tested to seeking help?

      Secondly, the accuracy of the home test kit versus the accuracy of clinically controlled testing …

      I can see some benefits but am very concerned about some of the issues that could occur

  4. I would be extremely reluctant to proceed with this before I know what a well designed pilot study has to say on the implications of home testing and what are the recommended delivery methods.
    If someone had to fill in a questionnaire testing him/her on HIV knowledge and where to get help before having a testing pack sent to them then that may be a compromise solution to the dangers of blindly sending out packs to people with little to no improvement in HIV knowledge.
    I still meet people who think HIV can be passed on through kissing, if they are repeatedly testing that’s not going to be good for their stress levels/health.
    Instead of rolling out postal packs, there should be increased funding for a proven and NICE approved method of increasing community HIV testing programmes which provides support and advice with high levels of confidentiality. Some areas have no alternative other than the local GU clinic. However that may cost more money upfront compared to postal kits! I say *may* as we have people knowing the tests we use are safe, reliable and that they have proper customised advice to their needs and level of understanding which decreases HIV stigma and ignorance.

    1. Chandan Verma 11 Oct 2011, 7:16pm

      Good initiative however few things make me worry.
      1. It is always advisable to do the HIV testing in clinical setting. Home testing kit should strongly advice to adhere to user/testing guidelines.
      2. Confirmatory test when one gets positive result through home Kit. Will increase cost
      3. Post test- How will the user manage the positive results. Counselling should be mandatory even if test result is (-)ve. The Kit should also give advice on counselling.
      4. Accuracy if home testing Kit
      the manufacturers must pilot it first and with the learning from the study, they should go ahead.

      1. Why is it always adviseable to do a test in a clinical setting.

        Some people would prefer to do it at home.

        As for the counselling – well personally I would prefer not have to speak to a counsellor before going for a test. They serve no useful purpose for me (although clearly they do for others). To me personally I find them irritating and time wasting.

        1. @dAVID

          My personal views on counselling are that it may not be necessary for all patients (and everyone taking a test technically is a patient whether at home or in a clinical setting) to have pre test counselling, although it will for some. However, no one knows what their reaction to a test will be if it proves to be positive and thus it is imperative that patients are given support at the time of results being given. Even more importantly, many people think they know the facts about HIV but don’t and many make assumptions about treatment, legal issues etc or do not even realise the issues that exist – thus, counselling is hugely important. Furthermore, will all people taking a home test seek clinical support to discuss whether treatment needs to occur or not? If not, and I suspect some would not then what is the value of that test to that patient or indeed wider society?

          As for the clinical setting, its beneficial from two perspectives – firstly, the availability of ….

          1. … counselling from professional staff who can give informed advice as to the reality of HIV and whether or not there is any need for treatment. Secondly, in a clinical setting testing should be aseptic and reduce risk of erroneous results due to cross infection from others or surfaces etc … whilst very unlikely – there is an increased albeit marginal risk outside of a clinical setting or by those not familiar with good aspetic techniques.

          2. “However, no one knows what their reaction to a test will be if it proves to be positive and thus it is imperative that patients are given support at the time of results being given.”

            Indeed – and no-one know what a 14 year old schoolgirl’s reaction to a positive pregnancy test will be either. But she’s allowed to purchase and use these without any support.

            Why the double standard?

          3. @dAVID

            The impact of determining someone is HIV+ or someone is pregnant, whilst both potentially have lifetime implications there are significant differences.

            The impact of burying ones head in the sand in both scenarios is different – in the pregnancy within 7-8months maximum the pregnant girl/woman has to deal with it. The HIV+ patient does not but the potential deterioration as a result of not dealing with it are significant.

            The impact to others in terms of their own health of a pregnancy is somewhat different to that being HIV+

            There are significantly less public health impacts of pregnancy compared to HIV

            I can see your arguments about choice (although I think choice needs to be informed choice) and about potentially increased testing being desirable but, on balance, think the risks are too great – unless some way can be found to significantly minimise them.

  5. Great if it increases the rate of testing, but I can also see lots of problems when someone living alone gets a positive result. There’s obviously quite a risk of suicide.

    It would be better to have walk-in anonymous testing widely available. Do NHS Walk In clinics offer this? They are great and very convenient, but you do have to register your name and date of birth.

    An anonymous version would be ideal, but with the results being given face to face, using a PIN number if necessary. That would a win-win situation, offering anonymity but with professional care available at the same time.

    1. There are some anonymous walk in clinics that do within the hour testing …

    2. THT (Terrence Higgins Trust) offers these in Waterloo as well as other sites around London I believe – you should be able to find out further information by googling it

    3. @Gerry

      I think we have to ask ourselves why someone may contemplate suicide when they receive a positive HIV result in 2011. I don’t doubt that for some individuals getting a +ve result is totally overwhelming and may result in self harm. No one wants to get a positive result, and your comment about suicide supports the argument that in prevention work, a very fine balance has to be struck between HIV being effectively treatable and well managed (in the UK), and it not being demonised whereby it is still perceived as a killer disease / and the effects of meds are horendous etc.

      As noted in the previous “dont ask dont tell” article we have some way to go to reduce anxiety, fear and stigma – perhaps home testing will help “normalise” HIV testing, and thereby reduce the stigma.

      1. @w6_bloke

        You know I agree with you a lot on HIV issues …

        In terms of the suicide risk, that is indeed a good argument for both seeking to work harder to prevent HIV and to reduce stigma …

        Whilst home testing could “normalise” testing and thus effectively decrease stigma to some – it would be the testing that was destigmatised, not HIV … the issue of seeking help would be where the lack of action would be shifted to … In terms of the psychological issues – the issues would shift to being more of uninformed and (sometimes) unrealistic speculation about the impact of HIV eg “I am going to die a horrible death and catch AIDS” from a worrying and difficult concern of “what if I have HIV” which retains a window of doubt and hope, whilst being reckless and dangerous through lack of testing.

        I think home testing is too dangerous due to lack of support.

  6. Im not convinced by the THT arguments to be honest.

    THT does some sterling work but my big concern is what happens emotionally to people taking tests at home – especially those who end up with a positive result.

    Counselling both before and after is crucial in supporting people going thru an HIV test process.

    1. Counselling is useful for some people.

      Other people (like me) find it irritating and intrusive.

      I’ve been getting tested for 15 years. I know the score, and I do not appreciate having to taking to some spotty oik before the test.

      If other people need that counselling then it should certainly be available but I would prefer if people could also opt out of it.

      1. But how would you react if the test became positive? Can you be sure you could decide whether treatment was necessary – in reality you couldnt because home testing does not give sufficient clinical information. Also, are you sure you are familiar with all the current legal, social and clinical information on HIV – if you are – greatl – the vast majority of people are not

        1. In the same way as a 14 year old girl who’s done a home pregnancy test and the result is positive.

          Panic, fear, denial.

          And then when I get used to the idea I’d get myself to a doctor.

          If cancer could be diagnosed through a home test I’d be fully in favour of that. It’s not however.

          Home HIV tests are a great idea. I think people who oppose them are well-meaning but out of touch.

          Not everyone will fall apart at a diagnosis. And I don’t think they should be forced to go to a clinic or a doctor for a test if they don’t feel like it.

          1. You may respond positively and with responsibility to a positive test when you had “got used to the idea” but I fear many others would not be as responsible as you. You talk as someone who has undergone testing, thus have at the very least a vague understanding that there is a possibility of a positive test result (however unlikely you expect this to be) and I suspect from the way you talk an understanding that action would need to be taken if the test was positive. Those who decline to be tested may not be so responsible or self aware.

            In the case of a pregnancy test whilst there would be panic, fear and denial (in many cases) as you rightly say, from the time of positive test to having to face the consequence is likely to be a maximum of 7-8 months. In the case of HIV, it is less clear how long before the consequences have to be faced and if left too late may end up in serious consequences for the patient (due to the patients choice not to seek help).

          2. I do agree that not everyone will fall apart at a diagnosis and nor am I suggesting that.

            I am suggesting that even the most informed person about HIV will have a different awareness about it post diagnosis and will be reassured and supported by obtaining help and/or counselling post testing. This is help routinely available in a clinical setting.

            Many others think they are aware about HIV, but on diagnosis discover many of the so called facts that they thought they knew were inaccurate.

            No one on a home testing could determine whether or not they requried treatment as no accurate VL or CD4 count could be determined on current home testing kits.

            I would be amazed (having worked prehospital as a paramedic) if anyone could achieve a completely aseptic scenario for testing outside the clinical environment so the integrity of home testing is questionable.

  7. I also agree what concerned resident said about false positive & negative results – Home testing might be ok for those people who are in long term committed sero-different relationships for example: people who are already comfortable with the issues – but I can’t see how someone who is testing for the first time could manage that level of emotional and psychological stress by themselves.

  8. I see no real difference between a home HIV test kit and a pregancy test kit.

    14 year old girls who think they are pregnant will have similar worries and anxieties to someone testing for HIV (although she will more likely be far younger, and less mature). Yes it’s a different condition, but I feel that a teenager is in a far more emotionally vulnerable place.

    No-one is suggesting (I hope) that home pregnancy test kits should be banned.

    The benefits of home testing FAR outweigh the disadvantages.

    Going to a clinic for a test is a horrible experience – even if it’s a 1 hour result place and even if you are fairly certain you are negative.

    1. I have mixed feelings and I think that whilst there is some merit in what you say about there being benefits of home testing there are significant drawbacks which in my opinion FAR outweigh the benefits.

      I feel that the stigma of HIV is what makes attending a clinic (for some) a problem. Thus if a home test results in a positive result there will remain (for some) a stigma about seeking help. This will result in a different type of problem from that currently. Currently we have a significant number of people unaware of their status who choose not to seek testing. This could lead to people being aware of their status and choosing not to seek advice on treatment and management. That has psychological impacts for that person and those they are close to (whether or not the result is shared) and potentially has public safety issues connected to it. There is also an issue of the time lag between home test result and seeking help and the psychological and potential safety impact….

      1. …. of the reaction of the person between testing positively and seeking support due to their assumptions based on being uninformed about the impact their diagnosis may or may not have.

        I fear that instead of having a population who do not seek testing out of fear of stigma etc we will have a population who know their status and are afraid to seek support. This may have both a public safety impact, impact on mental health services and cause other problems. The stigma is still there just the focus of how that impacts will have changed.

        We need to deal with the stigma and make testing a more socially acceptable and less frightening experience but that needs to maintain protection for individuals who are tested positively. Failure to maintain protection of those people is immoral and dangerous.

        1. I think it is better in general to have a population who knows their status to a population which does not know its status. regardless of whether the people involved seek treatment or support.

          Treatment for HIV is a choice; just as chemotherapy is a choice. Just as treatmetn for diabetes is a chhoice. No-one is obliged to seek treatment for any illness.

          I would suspect that someone who knows their HIV status would be less of a risk of passing it on, to someone who is blissfully ignorant of their status.

          1. @dAVID

            It would be good to think that people would be responsible and not pass on HIV

            There are very well documented cases of people believing they do not need to be safe any longer when they are diagnosed as positive (whether this view is long term or a crisis response for a short period) and thus engage in risky behaviour.

            At the time of diagnosis is likely to be the time that the person is most risky in terms of viral load. Hence the need for effective and appropriate counselling.

            Treatment is a choice, but it should be an informed choice. Making a choice on the ‘knowledge’ you have which may or may not be accurate or current is not making an informed choice.

          2. True but it brings me back to my original point – if someone wants to to a home HIV test and the technology is available to do that, then those people absolutely should not be prevented from doing so, just because some people will react very badly.

            It is wrong to insist that everyone has to behave in a certain way for fear of how some people might react.

            If a + person decides to ignore safe sex guidelines then he will probably do so irrespective of how he received his diagnosis.

          3. @dAVID

            If it was merely down to behavioural choices post home test diagnosis, then I would agree with you

            However, it is also down to lack of informed decision making, lack of support and even those reacting “well” not having the right level of support that most will find beneficial (even if they perceive that they will not do so in advance).

      2. And what about those people who would prefer to do a home test, without the requirement of going to a clinic, and who refuse to go to a clinic to get tested as a result.

        If the technology is there for home testing then it should be available over the counter to those who wish to avail of it.

        Second guessing people’s motives or reactions is unnecessary, unwelcome and unhelpful in my view.

        1. There are far better ways to help people to get tested and be responsible for their own health and that of those they may be sexually or emotionally involved with and to public health than by taking inappropriate and highly risky strategies that could cause significant damage to them and others in the medium to long term

          1. I would prefer to buy a home test kit though.

            And I would be extremely angry if I was prevented from doing so simply because you (or the Terrence Higgins Trust) decided i was not equipped to do this. My reaction would be ‘Who elected you to decide my health decisions. How dare you?’

            Are you in favour of pregnancy tests NOT being available over the counter?

            A positive pregnancy diagnosis may be devastating to a 14 year old. So you think she should ONLY be allowed go to her doctor to get one?

          2. @dAVID

            I have also explained that those selling pregnancy tests should use their training in Fraser/Gillick competency and child protection assessment in terms of selling a pregnancy testing kit and how they respond. I accept this only works for kits bought in pharmacies but nonetheless is an important assessment. If a 9 or 10 year old girl chose to buy a pregnancy test kit I would hope that a pharmacist or someone would seek to get the medical, psychological and social support they clearly need in that scenario.

            I would not restrict pregnancy test kits other than having care with very young girls having them without requisite support being considered.

            In terms of any other medical testing or treatment, whilst I totally support patient choice and patient involvement in decision making, and have strongly exercised my own choices in some of my clinical care as a patient in the past. Those choices need to be informed choices. I am a paramedic and will not give a patient a drug, …

          3. … procedure, referral or carry out a test purely because a patient asks for it. I will consider if it is in the patients interest and try and explain the options. Even if the patient insists and has mental capacity and does not accept my explanation then I will refuse to continue down that route if the patients wishes are contrary to their well being in my professional opinion. It may sound paternalistic but its based on a different level of knowledge base from many patients.

            Linked to this, I feel that when some tests are carried out because of presumptions and inaccurate information that are around and the lack of predictability of human response coupled with public health concerns – there is a legitimate wish to ensure that patient is supported when the diagnosis is or is not identified.

            That said if the various ethics and evaluation bodies permit home testing then it should be open to all – that does not stop me being concerned about the negative issues that we may have.

    2. You make a very good point here dAVID – and I guess this brings up the issue of age in relation to home testing. I guess it will be a minimum age of 16 or older maybe?

      1. There is no age limit at which someone can buy a home pregnancy test.

        Likewise there should be no age limit at which someone can buy a HIV test kit.

        If you are sexually active at 14 or 15 (as many people are) then there is no justifiable reason to ban them from buying medical equipment necessary for them.

        1. @dAVID

          You are correct there is no age limit for pregnancy testing kits, although I would expect that pharmacies selling them would bear in mind their child protection responsibilities if very young girls eg 10-11 were seeking to purchase them. Pharmacists should use their training in Fraser/Gillick competency to determine how to proceed with such sales.

          If HIV home testing kits were introduced, although I feel it would be damaging, then there should be a similar approach to sales whereby there is no age restriction. It would be preferable to encourage anyone wanting a test to seek it where appropriate support exists however.

  9. This is a difficult one – but on balance I think I am in favour of any initiative that will increase testing rates. The key thing here is that testing kits will be “regulated” here in the UK, and will provide an accurate result.

    We have to find a way of getting to the 25% of undiagnosed HIV +Ve individuals in the UK, as this is where most new infections originate from.

    HIV testing has changed over the years, with no pre-counselling now offered, just usually a behavioural risk analysis. Appropriate counselling and aftercare are provided should there be a positive or “reactive result”.

    There are more details that need to be fleshed out, but I think it is a step in the right direction.

    1. Dr Thom online sexual health clinic already offer postal HIV and other STI sampling kits in the UK. Here the person has to register on the website which does seem to have a risk assessment included, prior to the sampling kit being sent out. The results are available online and where appropriate a Dr will call the individual to discuss the test result (presumably with HIV this would be to discuss a “reactive result” and to provide information with regard to getting a confirmatory test in a clinical setting.

      Many outreach testing clinics rely on a confirmation test being carried out in a clinical setting – it is my understanding that they only say that the HIV test result is “reactive” and therefore further tests are required. I am wondering if the drop out rate is higher in this situation than in the traditional setting of a GU clinic etc. Despite receiving a positive result in a GU clinic some individuals do not continue to access HIV care and treatment.

      1. Dr Thom does indeed do a postal testing service. It does have methods in place to ensure support can be provided to the individuals however and they do state themselves that direct clinician contact is preferable in most cases.

        Even some clinical settings prefer a confirmation test (although strictly speaking unecessary). Certainly outreach settings do require a confirmatory test (not specifically to confirm diagnosis but to obtain an accurate CD4 and VL).

        I think a more effective method of improving testing is to offer it routinely such as many London A&E departments currently are. The issue of home testing is too risky to be an answer, in my opinion.

  10. I guess its like a ‘rapid test’ were it takes 20mins – there not actually as reliable, but from personal experience proved to be correct ( they put my mind at ease whilst I waited for the other two week test result).

    I practice safer sex but am paranoid when it comes to this particular STI because im gay. A home testing Kit would allow me to test more quickly and easily and only have to use the clinic every few months – which would save NHS resources.

    1. The rapid duo tests that are used in the UK are very accurate at detecting both antigens (these appear before antibodies) and antibodies. Antigens can be detected within a few weeks of exposure and the tests that are used are very accurate at 4 weeks post exposure.

      The Dr Thom HIV sample uses a saliva sample – not sure if a home testing kit would use either saliva or blood for the test. Just as a personal question Clark would you feel you would be using a home testing kit more so than taking a trip to a clinic. I only ask this as one of the problems that could be associated with home testing is multiple testing which could result in hightened anxiety.

  11. Jock S. Trap 5 Nov 2011, 4:22pm

    is worrying and very dodgy to say the least. With HIV must come the help.

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