People living with HIV are due to get the COVID-19 vaccine in phase six of the rollout – after people over 65 and along with those with a number of other conditions, before the rest of the population.
However, there's a problem with the original rules. Because GPs are compiling the list for each phase, people living with HIV were only due to get the vaccine if they had disclosed their status to GP. Not everyone has – for all kinds of reasons, including the stigma that still exists about the virus. People living with HIV told the HIV Commission the people they were most likely to experience HIV related stigma from were healthcare professionals.
This was causing a real level of concern in the community.
Do we know if #HIV clinics will be part of the distribution of the #Covid19vaccines ? If #PLWHIV have not disclosed to their GP their status, and clinics are not giving the vaccines, will these people fall through the gap for getting the vaccine when they are due?
— Stuart (@newlypositive) January 6, 2021
The policy and public affairs team, alongside our counterparts at National AIDS Trust and PrEPster, raised it with the Department of Health and Social Care in early January.
In the following days, we approached Stephen Doughty MP, chair of the All-Party Parliamentary Group on HIV/AIDS. He then submitted a parliamentary question on the issue. The issue was raised with the Welsh Government at the same time.
Then, in a regular meeting with the Shadow Health Secretary, Jonathan Ashworth, we raised the issue. He used his next question to Health Secretary, Matt Hancock to press the government to solve the issue and look into HIV clinics being able to provide the vaccine.
Thank you @JonAshworth for urging @DHSCgovuk to make the covid vaccine available in HIV clinics for people living with HIV.
Currently, GP surgeries oversee the vaccine roll-out.
'Many [people] haven't disclosed their status because of the stigma we saw portrayed in It's A Sin.' pic.twitter.com/PcCAC0Qyh4
— Terrence Higgins Trust (@THTorguk) February 2, 2021
2. My question on vaccination in HIV clinics went unanswered. On Thursday I wrote to Matt Hancock asking him to make arrangements to make it happen as part of the next stage as vaccination is rolled out for groups 5-9. pic.twitter.com/jqdKcwzZB8
— Jonathan Ashworth 😷💙 (@JonAshworth) February 5, 2021
Having heard our campaign and Ashworth’s calls, Times Radio presenter Gloria De Piero put the issue to Vaccine Minister, Nadhim Zahawi on Sunday 7 February.
"The NHS will try everything in its power"
Nadhim Zahawi, vaccine deployment minister, tells Times Radio, he's looking to support more people living with HIV who've not disclosed their status to a GP.
🔊 https://t.co/50SQDjxXjD@GloriaDePiero | @tnewtondunn | @nadhimzahawi pic.twitter.com/1ssopWkWgI
— Times Radio (@TimesRadio) February 7, 2021
The Minister promised to ‘look at a workaround with the NHS [who] will try everything in its power’.
During the week of 8 February, our policy team had a meeting with NHS England about how an alternative could be arranged. Our Medical Director, Michael Brady, was hard at work behind the scenes.
Over a week later and with no action, Ashworth put it to the minister Zahawi directly on Iain Dale’s LBC show on Monday 15 February.
On Thursday 18 February, Vaughan Gething, the Welsh Health Minister, announced that NHS Wales was changing the rules and had a new system to avoid unnecessary disclosure.
If you live with HIV and you haven’t disclosed your diagnosis to your GP, you may be concerned about how you’ll be contacted about your coronavirus vaccine.
In Wales, we’ve made changes so that your HIV clinic can now make the arrangements for you to be contacted. pic.twitter.com/i2VC2HRJve
— Welsh Government #StayHome🏠 (@WelshGovernment) February 18, 2021
Finally, on Sunday 21 February, we got the breakthrough in England that we had been waiting for. NHS England announced it will be following suit and giving people living with HIV the option to access this potentially life-saving vaccine through their HIV clinic.
This is great news and the right decision from the governments of England and Wales as it means people living with HIV will be able to take up the potentially life-saving COVID-19 vaccine at their earliest opportunity – even if they feel unable to share their HIV status with this doctor.
We're working towards a society where everyone living with HIV feels comfortable sharing their status with their doctor and other health professionals, but we’re not there yet and we welcome this fast, pragmatic action.
Some may be surprised to hear that a significant number of people living with HIV feel unable to talk to their GP about their HIV status, but this underlines how much stigma still surrounds the virus, even in 2021. We also know from talking to people living with HIV that healthcare is one of the areas in which HIV-related stigma and discrimination is still most rife with so-called ‘double gloving’ and other completely unnecessary additional precautions still being made at the GP, in hospitals and at dental surgeries. We're working on these issues with the NHS at the moment.
If you have any concerns or questions, THT Direct is available seven days a week with information about HIV and wider sexual health.
We want to thank those living with HIV that raised the issues and the parliamentarians who helped to push this, Stephen Doughty MP and Jon Ashworth MP in particular; the journalists to amplified the issue – Gloria De Piero, Iain Dale, Ben Butterworth and the team at Pink News deserve special mention; and the Ministers – Vaughan Gething MS and Nadhim Zahawi MP – and officials in the respective health departments, NHS Wales and NHS England for listening and making the changes necessary.
Campaigns like this can only happen with the kind support of our donors. If you want to see more campaigns to change policy affecting those living with HIV and to end new cases of HIV by 2030, please make a donation today.
Ian Green is Chief Executive of Terrence Higgins Trust.