How we won the HIV Action Plan for Wales

The landmark plan, launched by Eluned Morgan, sets out a map to ending new cases of HIV in Wales by 2030.

Yesterday, the Welsh Government published the final version of the HIV Action Plan for Wales. This groundbreaking plan which targets zero transmissions by 2030 has been long in the making. This is how Terrence Higgins Trust Cymru and our partners across Wales made it happen.

It’s important to say we didn’t win this on our own. We couldn’t have done any of it without our partners at Fast Track Cardiff & Vale, or our supporters in Wales (and beyond) who kindly fund our advocacy work, helping to ensure our voice echos around the corridors of power.

Wales was the first UK nation to pledge to end new cases of HIV by 2030. Vaughan Gething, Health Minister at the time, made the announcement at a Terrence Higgins Trust Cymru event in November 2018. England followed suit in January 2019 and Scotland in December 2020.

This pioneering spirit meant that Wales was an early adopter of PrEP – the drug taken by people who test HIV negative to stay HIV negative. Its pilot was uncapped, unlike the trial in England.

COVID-19 risked engulfing all things HIV, but it did bring two good innovations in Wales. The first was a pilot postal STI and HIV testing model, which was made free and all-Wales wide. This meant everyone in Wales, rural or urban, could access a free HIV sampling test. The second was the coming together of Wales’s first Fast Track – our friends in Cardiff & Vale.

However, there was no route map set out to ensure Wales is meeting this ambitious goal: zero HIV cases by 2030. The HIV Commission – founded by Terrence Higgins Trust, National AIDS Trust and the Elton John AIDS Foundation – gave a blueprint for success. Wales needed a plan.

HIV and the Senedd elections 2021

With the Senedd elections confirmed for May 2021, Terrence Higgins Trust Cymru and Fast Track Cardiff & Vale we determined to get the political parties in Wales to make their goal of no new cases of HIV in Wales by 2030 a reality.  

Together we set out – and sent out – six key demands for each party’s front bench and manifesto teams:

  1. A HIV Action Plan for Wales to meet the aim of zero HIV by 2030 developed with the HIV voluntary sector,  leading clinicians and people living with HIV and informed by the HIV Commission.
  2. Establish Fast Track health board networks across Wales, building on the success of the Cardiff & Vale pilot.
  3. Fund the national HIV and STI postal testing from Public Health Wales and support the creation of a HIV Testing Week Wales to promote HIV testing, ensure everyone knows their status and reduce late diagnosis.
  4. Establish a national HIV surveillance system.
  5. Expand on the PrEP rollout in sexual health clinics and make this important HIV prevention drug available in GP surgeries and in pharmacies across Wales.
  6. Launch a national anti-stigma campaign – with the HIV sector in Wales – to fight prejudice and help those living with HIV live discrimination-free.

The response was excellent.
Versions of our demands were successfully adopted in different forms into the manifestos of Labour, the Liberal Democrats and Plaid Cymru. It was backed by all parties, including the Conservatives, at the LGBT Hustings run by Pride Cymru, and Stonewall.

Post-election: turning promise into action

Labour won the election. Their manifesto from April 2021 included the following:

‘Work with charities and clinicians to develop an HIV action plan for Wales and seek ways to encourage testing for HIV, reduce late diagnosis and advance the roll out of prevention drugs. We will work with partners to tackle the stigma experienced by those living with HIV.’

On 17 June 2021, the First Minster Mark Drakeford published his Programme for Government. It outlined the Government’s top 100 policy priorities. It included the promise to ‘Develop an HIV action plan for Wales’ as just one of just 11 healthcare priority policies. As the document sets out, ‘responsibility for all of these will rest with the First Minister and the full Cabinet as these will require the highest level of co-ordination and integration across the whole of government’. Each appear on a spreadsheet at fortnightly cabinet meetings where progress is monitored by a traffic light system.

‘Tackle the stigma experienced by those living with HIV’ is one of 24 health policies that appears in a second category of priorities.
In September 2021, Terrence Higgins Trust Cymru and Fast Track Cardiff & Vale were invited to join a Welsh Government led working group. Together we shared our expertise and found people living with HIV in Wales to feed in directly.

In spring 2022, together we toured the party conferences to make our case and hosted an event with LGBT Labour Cymru and Minister for Health and Social Care, Eluned Morgan at the Labour conference in Llandudno.

The draft action plan

The draft HIV Action Plan was launched at Terrence Higgins Trust Cymru’s 40th anniversary event in the Senedd by First Minster Mark Drakeford. It included 26 actions and many of our recommendations.

We launched a mini campaign to get our supporters to suggest further changes. Welsh Government received nearly 50 submissions supportive of our position and the final plan included a number of changes and a final 30 actions.

The final plan

The final HIV Action Plan was launched by Eluned Morgan, Minister for Health and Social Care, at the start of March 2023. The plan included additional actions, called for by Terrence Higgins Trust Cymru, including ensuring that older people living with HIV in Wales were considered and form an important part of the action plan.

The plan establishes a national network to achieve the 2030 target, via Fast Track Cymru, as well as a new case management system to ensure data is shared and better approaches taken. We’re pleased that funding will also be made available for a Welsh HIV Testing Week as well as a peer support network which will be key in ensuring both the end of transmission and those living with HIV can live well in Wales.

Thank you

Working towards the HIV Action Plan has been a team effort. First and foremost, we owe tremendous thanks to our partners in Fast Track Cardiff & Vale, who have been lockstep with us in developing this plan. We must also thank the many other organisations that have played important roles, including Stonewall Cymru, Chiva and more.

Further to this, the tireless work of officials, civil servants, practitioners and providers has resulted in a plan that the whole nation can be proud of.

Of course, none of this would have been possible without cross-party support by Members of the Senedd as well as the commitment and political will we’ve received from the First Minister, the Minister for Health and Social Care and the whole of the Welsh Cabinet.

Finally, we owe our thanks, as ever, to the people living with HIV in Wales who have worked with all of us to ensure their voices, concerns and hopes are captured, listened to and developed into a plan for a zero-transmission future in Wales.

Diolch yn fawr iawn.

Rhys Goode is head of Terrence Higgins Trust Cymru.

Speak to someone

We’re open:

10am to 6pm, Monday to Friday
Our phone number is 0808 802 1221.

This is free to call from all UK landlines and most major mobile networks. It won’t appear on your telephone bill.

Live chat

We’re trialling a new live chat service to offer you support without the need to make a phone call.

The chat is open Monday to Friday at the following times:

  • 11am to 1pm
  • 3pm to 5pm

Live chat is anonymous and confidential. We’re offering it alongside our phone helpline, initially at the times given above.

At the end of your chat session, you’ll be directed to an online survey about your experience. Please take a few minutes to fill this in as it helps us to understand how live chat is working. We’ll use this feedback to develop the service further.