It's Time to Allow Home Testing Kits for HIV in the UK

I'd say learning you're HIV positive is roughly the same level of 'life changing' as learning you're pregnant... We should make home tests available in the UK. We should encourage high-risk people to use them often.
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A GP told me last week he couldn't remember the last time a woman had come to see him for a pregnancy test. Home pregnancy tests are now so accurate, there's no need to see a doctor.

It's strange now to think that the medical profession was quite unsure about home pregnancy tests when they were first launched. In 1978, just as the first home pregnancy tests were hitting the market, one concerned doctor from prestigious hospital Johns Hopkins told the New York Times, "Pregnancy is a very emotional event and people don't [use home tests] as well as they might. They have a hard time following even relatively simple instructions."

In the years that followed, women all over the world decided that even if home tests were a bit less accurate than their doctor would be, they also had big advantages. Convenience. Privacy. Anonymity. The chance to cry in your own loo.

Nowadays, of course, home pregnancy tests are as easy to get as toothbrushes. But it seems we haven't learned the broader lesson about letting people make their own decisions about how they get tested.

When it comes to HIV status, we still don't trust people to test at home. In the UK, while it's legal to offer HIV home sampling (in which you post off the sample to a laboratory), full HIV home tests - the kind where you find out the result in your bathroom - have been prohibited since 1992.

It's high time that ban was lifted.

Back in 1992, positive HIV status was virtually a life sentence. Thankfully, that's no longer the case. HIV treatment has improved so much that people with HIV live for decades. You can now get life insurance as an HIV positive person. There's even emerging evidence that people with HIV who make it to the age of 60 may have longer-than-average life expectancy.

Despite that, this week India's National AIDS Control Organisation announced it won't be lifting its own ban on HIV home tests. An official explained, "We don't want people to self-test and then commit suicide or self-harm because they are HIV positive."

I'd say learning you're HIV positive is roughly the same level of 'life changing' as learning you're pregnant.

The real public health risk comes not from suicide, but from people who don't realise they have HIV passing it on to others. In the UK, a quarter of those with HIV don't know they have the virus. But a recent survey of people with HIV found that over a third would have been diagnosed earlier if home testing kits were available.

We should make home tests available in the UK. We should encourage high-risk people to use them often. We'd need to regulate them properly, be upfront about the tests' accuracy, and make sure they come with details of where to get further advice and support. In lifting the home testing ban we would be following the lead of the United States, where the FDA approved an HIV home testing kit for the first time in July this year.

The broader principle in all of this is also important. It didn't end with pregnancy tests and it doesn't end with HIV tests. It's this: what the medical establishment values isn't always the end of the story. Things that patients value, like convenience and privacy, can be just as important - or even more important, when it makes the difference between people accessing and not accessing healthcare at all. The difference between an HIV test that's quite accurate and one that's very accurate might be important. But the difference between either of those things and an at-risk person not getting tested at all is much bigger.

We need to give patients a variety of options, supported by clear, evidence-based information and advice, and allow them to make their own decisions. It's all part of healthcare's retail revolution.