In 2015 the stigma around HIV has failed to be controlled anywhere near as well as the virus itself.
My heart sank when I heard the news of yesterday’s leak of HIV patient data from 56 Dean Street. It’s a devastating blow for all concerned. For the individuals whose names are on the list, who might may fear being identified; for our own clients who work in partnership with us and the clinic; and for the staff at 56 Dean Street who have worked so hard to make the service welcoming and accessible to LGBT patients.
The error is one we all live at risk of. So many of us must have clicked the wrong button, or selected the wrong name when sending digital communications. Mostly it’s with less consequence – embarrassment at having copied in the wrong colleague, or once in my case texting a friend about how a date had gone but sending it instead to the date himself. Cringe worthy at the time, but a cringe soon passes. The consequences of this could live much longer.
Of course, any breach of procedure needs serious investigation, and this will reach further into the NHS as a whole than just this clinic. As this goes on it feels a timely point to look at what the impact on affected patients might be, and here there are some far more significant issues at play than whether a policy or process has been breached. The fear that some affected patients will inevitably feel is driven by one ugly factor: in 2015 the stigma around HIV has failed to be controlled anywhere near as well as the virus itself.
I don’t want for a moment to diminish the very real emotions that anyone named may feel; the issues of disclosure should be a personal choice, and many fear this choice may have been taken away. But what’s driving the decision to remain private about being HIV positive is that disclosure still results in rejection, in prejudice, and in discrimination. HIV positive people can be made to feel ashamed, but the really shameful thing is that the understanding of what living with HIV is like lags in the stereotypes and myths of four decades ago.
Living with HIV today in Britain –when diagnosed early and properly treated – is no longer a life-limiting condition. Life expectancy for an HIV positive person is virtually the same as for one who’s negative. People on treatment enjoy a suppressed viral load, making HIV undetectable in their bodies, and making them the least likely to pass it on. People who test, receive a positive diagnosis and commence treatment are taking responsibility for their health, and the health of others. New advances such as PrEP offer exciting opportunities to HIV negative people to remain so, and hope to those of us working in public health that we have new tools to eliminate the spread of HIV.
1 in 6 people think you can get HIV from kissing
But stigma still blocks the way of our progress. Old habits die hard, and research published by the National AIDS Trust last year showed public awareness of HIV to be shockingly lacking. Only 45% of people correctly identified all routes through which HIV is transmitted, with about one in five not knowing HIV can be passed on through sex without a condom. One in six still think it can be passed on by kissing. One in ten think people diagnosed with HIV will be dead within three years with a further quarter not sure whether this statement is true or not. Some of the awareness had worsened over time when the data was compared. We ought really to be seeing this improve.
Given such misinformation it’s scant wonder many people decide against testing. Almost one in five men who have sex with men in the UK who are HIV positive don’t know their status. It makes them the most likely to pass on HIV without even knowing. Stigma is preventing people from accessing treatment that can improve their own health and reduce the risk to others. We can’t let stigma continue, but when we see politicians like Nigel Farage and journalists like Sky News’ Kay Burley rehashing inaccurate information and deploying divisive, inflammatory language we set the fight to combat stigma back a few more steps.
Removing stigma - preventing HIV
The key to HIV prevention is removing this stigma, and making HIV just another long-term medical condition; we must remove the stigma of testing; we must remove the stigma of a positive diagnosis; we must remove the stigma of living with HIV; and we must remove the stigma that prevents people disclosing their status. These are the actions that will ultimately reduce the fear felt by those whose status may have been accidentally disclosed yesterday. To do this will require a shift in public awareness, a shift that will be harder to achieve with continued disinvestment in HIV prevention, which has been slashed over a decade, and harder to achieve with more public health cuts looming ahead.
In the short term we need to look after those affected by yesterday’s data breach and rebuild trust with patients and service users. This is something all of us working in the HIV sector need to support. The 56 Dean Street clinic remains a leader in its field. For us at London Friend it’s been a joy to work with them developing such innovative services as Code and cliniQ, and see barriers tumble thanks to the will of staff and management to make ideas happen. It’s no coincidence they have the trust and confidence of thousands of patients each month because they’ve worked hard to reduce the stigma of attending a sexual health clinic and to make service users welcome. It would be a crying shame to see this lost at the push of a mistaken button.
56 Dean Street, and its parent NHS Trust, have taken swift action to try to limit the impact and set up support for those affected. It is right that a breach or procedure such as this is properly investigated by the relevant authorities. As a partner agency we will maintain contact with the clinic as their investigations continue and take any actions needed to ensure this doesn’t happen again. A helpline has been set up by the clinic for any patients worried about their own data and privacy. People can contact them on 020 3315 9555 or 020 3315 9594.