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James: 'After I was diagnosed with HIV, my life really changed. I realised my dream to become a pilot.'
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In the first week of the year, our policy team met with two pilots living with HIV. We heard about how aviation policy was based on out-of-date HIV information, about the inconsistencies in how pilots living with HIV were treated, and about the horrific response that one pilot got when he retrospectively shared that he was living with HIV.

Just over six months later, the UK Civil Aviation Authority (CAA) – the regulator body – has today announced changes that meet all of our and the pilots’ demands and will directly benefit the lives and careers of pilots living with HIV.

It's yet another area of HIV discrimination overcome and removes the final barriers to people living with HIV having a full career as a commercial pilot. We had four areas of concern that we pushed for change on:

1. Barriers to having a full career in aviation

Previously, pilots living with HIV were held back in their careers for no reason other than outdated policies. Pilots were limited in the medical licences that they could gain, which meant that the vast majority of pilots living with HIV were not able to achieve a licence that allowed them to fly solo – cutting off some jobs to them.

This has changed, with the CAA announcing that all pilots living with HIV are now able to work towards gaining a full medical licence (unrestricted UK Class 1 medical certification). There will now no longer be any limits with pilots being able to work towards any pilots role they wish in the aviation industry.

2. Lack of up-to-date guidance on HIV

Since a landmark change in 2018 that saw people living with HIV being able to train as pilots, there has been no up-to-date HIV guidance from the CAA for pilots. No clarity on what is expected of pilots, what the pathway is for gaining a medical licence, nor what medical tests they would need to undertake. This brought stress and uncertainty to pilots and resulted in inconsistency in the system on the way that pilots were treated.

However, today the CAA has released new guidance – written in partnership with the British HIV Association (BHIVA) – to reflect the most up-to-date clinical HIV guidance. It clearly sets out the information that pilots living with HIV urgently wanted.

3. Impact of unnecessary neuro-psychometric testing

Previously, all pilots living with HIV were forced to do regular neuro-psychometric tests that pilots described as 'harrowing'. These tests weren't based on the up-to-date clinical evidence on HIV and pilots had to pay their cost themselves.

Today, the CAA has announced an end to mandatory neuro-psychometric testing for pilots living with HIV. The change will mean that no pilot living with HIV will now have to automatically do these tests. Instead, each pilot will be assessed individually, with a greater role in the process for HIV specialist doctors. This will mean that the vast majority of pilots will not need to do these harrowing and unnecessary tests in the future.

4. Treatment of pilots who retrospectively disclosed they were living with HIV

Previously, many pilots did not feel confident to share that they were living with HIV with a lack of trust in the system. We heard how this caused distress to the pilots themselves with the burden of 'keeping this secret'. Where a pilot did retrospectively disclose to the CAA that they were living with HIV they were not supported, one pilot even receiving a threatening letter from the authorities when they disclosed.

This will now change. The CAA will be a 'compassionate regulator' and not penalise any pilots who, over the next six months, share that they are living with HIV. This six months amnesty is welcome and we hope will be an opportunity to reset relationships and lead to a more trustful and supportive aviation regulator.

How the change to aviation policy on HIV happen

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Pilots living with HIV now have clarity on the career route open to them and have confidence that the medical system they are a part of is based on the most up-to-date evidence on HIV.

It's incredible to see that the CAA has taken all of our concerns on board and have taken action to overcome them. These changes are also globally significant. The UK is now leading the way in aviation HIV policy and leading by example with making evidence-based changes.

Over the past six months we've worked with the British HIV Association to set out the case on why change was needed. Special thanks goes to Dr Tristan Barber who worked incredibly hard with the CAA to ensure that the updated guidance was embedded in HIV fact and evidence and pushed for the ending of mandatory neuro-psychometric testing.

We worked through our political networks. A meeting with the All-Party Parliamentary Group on HIV enabled parliamentarians to hear directly from pilots living with HIV on their powerful experience and why urgent change was needed. A meeting with the Minister for Aviation, organised by the APPG, also allowed us to push directly for the changes to be made.

Credit must also go to the CAA who recognised early on when we jointly raised our concerns that change was needed. They worked in a collaborative and open way to ensure that the changes worked for pilots living with HIV and have pushed the changes through at pace.

However, this is of course all about the pilots we worked with. Their courage to come forward and share their experiences – and their resolve to improve the experiences of other pilots living with HIV – is inspiring and already having an impact on the lives of others.

There is no place for HIV discrimination and out-of-date ideas about HIV. People living with HIV should not be held back by their HIV status. These changes reflect yet another barrier overcome.

Working together we can change outdated policies and practices and ensure that they reflect the reality of living with HIV in 2022.

Debbie Laycock is our Head of Policy and Parliamentary Affairs.