Testing, testing…

“Is this some sort of test?”
“Everything that doesn’t kill you is.”
Michelle Sagara West, Cast In Secret

DISCLAIMER: I am a doctor, but I am not a *sexual health* doctor. I am writing this as a sex-positive woman who understands medical jargon, nothing more than that.

I took a pregnancy test last week. On a night shift, I’d looked after a confused retired midwife who kept rubbing my belly and saying ‘Oooooh!’ no matter how often I reassured her that I wasn’t pregnant and my bloated stomach was just a combination of a lot of crisps and a rather unflattering dress. But despite knowing that my contraceptive choice is greater than 99% effective, I still peed on that stick to reassure myself that the ancient old crone didn’t have a magical sixth sense, which, of course, she didn’t. Because why run the risk of not knowing?

And then a few days later, I took a home HIV test. Freedoms Shop, a sexual health promotion initiative run by NHS Central and North West London Foundation Trust (CNWL), were one of the sponsors of Eroticon and gave me a BioSure home test kit to review. As I will explain a bit later, it was slightly more involved than just peeing on a stick but really only slightly, and I was struck by a similarity between the throwaway nature of both of these tests and the significant life-altering effects of a positive result.

Except that I suspect I would know how to handle an unexpected pregnancy better than a surprise diagnosis of HIV.

***

HIV, or the human immunodeficiency virus, as a disease has been completely revolutionised by effective treatment. In the 20 years since antiretroviral therapies were introduced, it has changed from a ‘fatal infection into a chronic, manageable condition,’ according to the Public Health England (PHE) 2016 report into HIV in the U.K. Effective treatment not only prevents the symptoms of HIV and progression to AIDS (acquired immunodeficiency syndrome), it also means that someone who is HIV-positive can have such a low viral load that it is impossible to transmit the virus if it has been undetectable for 6 months [1], which is frankly a remarkable achievement for medicine!

The difficulty, of course, is that you need to know that you have the disease in order to receive treatment. PHE estimate that over 13,000 people are currently living with HIV and are unaware of their diagnosis, and late diagnosis has significant effects for both the individual and the wider public [1]. HIV may not cause any symptoms or signs until the disease has reached more advanced stages, which can take many years, and, unfortunately, diagnosis at this time will inevitably lead to a poorer outcome and higher risk of death [1]. Also, the fact that effective treatment can prevent viral transmission means that most new infections must have been passed on from people who did not know that they had HIV [1]. Hence the national and international drive to increase HIV testing and make it as easy as possible to access testing services!

I was interested in finding out if these methods were working and wanted some rough figures on HIV testing so I asked Twitter!

I have no idea how these numbers compare to national or international figures, particularly as I only had 134 responses, but I must admit to being disheartened by the low uptake of HIV testing from my followers and from those who follow my friends within the sex blogging and sex-positive community who shared my polls. 52% is barely a win – ask any Remainer – and it made me wish I’d asked those who had never been tested why they’d avoided it.

Because tests are easy to obtain. Whether using more traditional, doctor-led testing services at GUM clinics or GPs, or using postal or home testing services, there is always a way! There are even two different types of home tests: the first, self-sampling, require you to take a blood sample at home but then post it to a lab for testing, and can be obtained for free from some GUM services like SH:24 or from websites such as freetesting.hiv and test.hiv. The second method, which I’m reviewing later in this somewhat epic post, are self-testing kits where you perform the whole thing at home – test, results, everything, just like a pregnancy test – and include the BioSure kit. As far as I could determine, these are not yet available free and the BioSure kit costs £29.95.

Unfortunately, feedback from my polls suggests that not everyone knows about these different methods. Some respondents struggled to get tested as they were limited by the opening hours of their local GUM clinic and had not considered home testing, whereas others had no idea that home testing for HIV was even an option.

Despite this, the drive for testing does seem to be working – 56 Dean St, London’s busiest sexual health clinic, has seen its first drop in new HIV diagnoses with numbers falling by 40% despite performing a similar number of tests [2]. This is really exciting news! In a blog for SH:24 posted in January 2017, Dr Michael Brady, a consultant in sexual health and HIV at King’s College Hospital, attributed this to regular testing and good preventative measures. These included barrier protection with condoms and ‘biomedical approaches,’ such as post-exposure prophylaxis (PEP) after a risky encounter and pre-exposure prophylaxis (PrEP) for people who regularly participate in higher risk activities [2].

So why are there still so many people living with HIV and not knowing? Why don’t we all get tested all the time? Devastatingly, it is often because HIV remains a disease surrounded by stigma and misinformation, as is the case with all sexually transmitted diseases.

There are so many factors that contribute to the stigma of HIV – lack of education and misunderstanding about transmission or treatment, left over fear from when it was incurable, its connection with sex, and the fact that the people most at risk are those who are already part of stigmatised and marginalised groups, such as gay or bisexual men, migrants and those who inject drugs. Dr Brady told SH:24 that he often hears from his patients that they would just ‘rather not know’ [2]:

‘There’s also a mixture of real stigma and perceived stigma. People feel that they’re going to be discriminated against or stigmatised, and it’s not always the case. Having said that I can’t look someone confidently in eye and say they will get nothing but a good reaction if they tell somebody they’re HIV-positive, because bad reactions as a result of ignorance, fear or misunderstanding still happen…The stigma is false and unfounded – nobody should be blamed for a medical condition.’

I asked SH:24 about this stigma and Adam Black, their lead sexual health nurse, feels that increased accessibility to screening and testing services is helping to address it. Making sexual health services more visible and more public by moving them out of hospital based sites and onto high streets is helping to normalise STIs, and the availability of postal testing services allows those people who remain too worried or scared to attend mainstream services to still get tested. As that well known supermarket used to claim, every little helps!

Whether deservedly or not, this stigma was the first thing that crossed my mind when I was given a home HIV test to review. Even knowing that HIV is treatable and manageable and shouldn’t impact my life any more than just having to take pills every day, a positive diagnosis is a big deal. It is life-changing, and I don’t know if I’d want to receive that news alone and in my own home with only the internet to answer my questions. In my professional career, I break a lot of bad news and I know that our thought-processes in those first few moments are rarely rational. I worry about what reaction would come from seeing those two lines on the test strip to indicate a positive result. Panic? Fear?

But those words ‘in my professional career’ can be both a blessing and a curse. By the nature of being one, I am very pro-doctor – I would want a doctor involved in my diagnosis as I strongly believe medical practitioners only want what is best for us and strive to provide good, accurate and judgement-free advice and treatment. But I am aware that this is not a universal belief or experience, much as it pains me to admit that my profession has let so many people down.

So I asked for an opinion from someone who knows all about being diagnosed with an incurable STI – Ella Dawson, the fabulous erotic fiction writer, herpes activist and general badass has written insightfully and honestly about her experiences since contracting herpes, and also made a pretty fantastic TEDTalk on the subject too:

Ella agreed that there are pros and cons to home testing. On one hand, home testing provides a lot of agency when it comes to sexual health – we are in charge of our testing and can take the test when it is convenient for us and in the privacy of our own homes. If we felt intimidated by doctors, fear judgement, or didn’t want to admit to being sexually active or undertaking high risk sexual practices, no one else needs to be involved and we can still get tested. This is, of course, fantastic!

But if we are not comfortable pursuing medical care for testing, we may not want to see a doctor for treatment either. This reluctance would delay treatment and create further risk.

Remembering her own herpes diagnosis, Ella found medical support at that time extremely helpful, although she acknowledges that not everyone has such positive experiences, and she shared my worries about people receiving potentially upsetting news without that support:

‘I think I benefitted greatly from having a doctor’s professional opinion and experience to learn from that day. She put my panic in perspective by telling me about how common herpes was at my university…If I’d learned of my status alone, I might have been even more scared.’

This fear is a very real concern. If I took a test at home and got a positive result, would I know what to do? Sadly, 59% of respondents to my polls felt that they wouldn’t know, which only adds to the fear around a new diagnosis. The BioSure test does recommend that positive results are confirmed by a health professional, but this limited support grates on the doctor side of me and feels like a poor service.

While thinking about stigma, education and risk with home testing, I also worry about people taking the test at the wrong time and being falsely reassured by negative results. There is a delay between being infected and having a positive test result known as the window period, which 38% of my Twitter poll respondents did not know. Traditionally, only tests taken three months after exposure were accurate but newer tests are reliable after 6 weeks. Either way, taking a test immediately after a risky exposure will not reveal if HIV has been transmitted and it is important to see a doctor as soon as possible in these circumstances to discuss the need for PEP and start this treatment within 72 hours. Like the morning after pill, this can be used in an emergency to prevent transmission, stopping the virus before it becomes an established infection.

There really is a lot think about! So what should we do?

Well, we need to change how HIV is perceived, both by medical practitioners and by everyone else, so that we are as comfortable discussing it and preventing it as we are talking about reducing the risk of other conditions like diabetes or heart disease. HIV is a chronic disease like any other and should be treated as such without fear of judgement or stigma.

We also need to get tested for HIV often enough and talk about it loudly enough that taking an HIV test becomes as every day as taking a pregnancy test. Sexual health professionals still talk about the ‘Prince Harry effect’ and how much testing increased after he publicly took an HIV test live on Facebook [2]. Increasing HIV testing benefits everyone – if you discover you have the condition, you can receive the life-saving treatment, and reducing the number of people who may be unknowingly transmitting the virus will inevitably reduce the number of transmissions. It’s not inconceivable that HIV could be eradicated entirely.

But are home testing kits the way to go? Here’s my experience…

***

First important question – are these home tests good enough and reliable enough?

When deciding how good a test is, it’s important to determine how reliably it detects that a positive result is positive – the sensitivity – and also how reliably it confirms that a negative result is negative – the specificity. If either of these are too low, there is a chance that infected patients will be missed or that uninfected patients are incorrectly diagnosed, which are both bad. The BioSure kit reports a 99.7% sensitivity and 99.9% specificity, which is impressive. It should be noted that less than 1500 patients were used in the studies to determine these statistics, as reported on the insert with the test, but clinical guidelines have been based on less so this need not necessarily be a criticism.

So the test is reliable, but is it easy to use?

It does appear very straightforward – quick stab, collect some drops in the pre-prepared tube and wait 15 minutes for the result. Was it that easy?


And it sort of worked! It is very simple – the lancet is easy to use and the blood collection is logical. The stab with the lancet wasn’t that painful, although it did leave me with a bruise after I had to squeeze my finger to get enough blood for the 2.5 microlitres it requires. And that’s really it! Once the blood is collected, you just need to push the tube into the buffer, stand it up and wait. It didn’t seem like it could go wrong.

As the video will attest, however, it did go wrong. Almost immediately! My test did not progress. The buffer was not rising up the test strip. And I thought I’d pushed the tube far enough into the buffer to work. I really did! I even pushed it in deeper a few times to make sure and it popped and clicked and balanced upright and looked right, but it still wasn’t working. At the 3 minute check, there was no sign of the test progressing, but I waited the 15 minutes just in case. Nothing.

So, with nothing to lose, I took it out and played around and managed, somehow, to push it in further. I’d suspected that I might not have pushed it in far enough when the tube didn’t fit in the display case, as the picture on the left below demonstrates. This is a good way to check if it’s been pushed in deep enough – if it’s still taller than the display case, push it in further!

Once I’d pushed it in that final way, the test solution instantly started rising and it became obvious that it was now working properly.

With hindsight, I should have noticed that it wasn’t doing anything and persevered with pushing it into the buffer solution. The solution and blood mix is purple and discolours the strip as it rises. The result was apparent well before the 15 minute time limit (once it was working!) and the result was clear – one line to show it had worked, two lines if it were positive.

Easy. Fiddly, but easy.

And then you can throw the whole thing away, lancet and all, in a discrete and opaque bag so no one need know what you were doing.

Would I recommend it though? I’m not sure…

Coming to a final opinion is difficult because I am writing this from an incredibly privileged position – I live within the catchment area of SH:24, a 24 hour sexual health service supported by Guys and St Thomas’s charity. They offer a free postal STI testing service for chlamydia, gonorrhoea, syphilis and HIV. The testing is as easy as the BioSure test I reviewed here and you receive the results within 7 days. Results for chlamydia and gonorrhoea are automatically texted with advice to attend a local GUM clinic. For conditions that need more input, such as syphilis and HIV, they do not consider postal tests to be diagnostic and describe them as screening tests. If they are ‘reactive,’ a member of the clinical support team calls to discuss the result and answer any questions. SH:24 have arrangements with sexual health clinics to fast-track people with reactive results so they can be seen on the same day for confirmatory testing. This whole set up is just so reassuring.

For me, this is the ideal situation – all the convenience of a home test but with the support of a sexual health clinic. Sadly, this type of service just isn’t widely available.

Because home testing is a definite yes – when clinic access is difficult or overwhelming, having the option to take a test at home and at your convenience is such an incredible luxury. Without the ingrained support of a sexual health service, the choice of self-sampling or self-testing becomes a personal preference – do you pay for immediate results with a self-test like BioSure or wait 7 days for free postal results?

My loyalty to the U.K. health care system that is free at the point of use means that I do struggle to promote a paid-for health service when the NHS can provide at least a similar, perhaps in some regions better, service for free. £29.95 isn’t an insignificant amount of money, particularly if frequent and regular tests are recommended. But the opportunity to avoid the potential anxiety or stress encountered when waiting for the results may make this a worthy investment!

But plan ahead. Think about what you would do if the test is positive. And remember, it’s not the end of the world anymore. You’ll be OK!

***

So after all of that, what are you waiting for? Find a testing method that suits you the best and get tested.

Why not do it now.

Here are some links to resources you might need:

  • Buy the BioSure test kit from Freedoms
  • Order a free home HIV sampling test: freetesting.hiv or test.hiv
  • For other free postal STI tests: freetest.me – these are dependent on the funding in your local area.
  • Find more information on your local GUM services: sxt.org.uk
  • Terrance Higgins Trust, for support and accurate information: www.tht.org.uk

Special thanks to Adam Black, lead sexual health nurse, and Leanne Ford, communications lead, at SH:24 (sh24.org.uk) for their support and answers to my questions. Do check if they send postal testing kits to your area as they’re absolutely brilliant!

References:

1] Public Health England: HIV in the U.K. 2016
2] PrEP, stigma and innovation in sexual health: we talk to Michael Brady. 
3] Full results of my Twitter polls

Freedoms provided the BioSure test kit for free in exchange for this review but all the opinions are my own.

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