Report puts spotlight on needs of women affected by HIV

Terrence Higgins Trust and Sophia forum recently launched  ‘Women and HIV: Invisible No Longer’, a report to bring attention to the needs of women living with or affected by HIV. It was co-produced with women living with and affected by HIV.

The report was developed using existing evidence and new data generated with over 340 women through surveys and workshops.

It focuses on all women, including trans women, regardless of sexuality, ethnicity, whether they do or do not have children, or are pregnant or not.

Key Findings

Some of the key findings include the following:

  • Almost half (45%) of women living with HIV in the UK live below the poverty line.
  • Over half of women living with HIV in the UK have experienced violence because of their HIV status.
  • Nearly one third (31%) have avoided or delayed attending healthcare in the past year due to fear of discrimination.
  • Two thirds of women living with HIV (67%) are not satisfied with their sex lives.
  • Two in five women living with HIV (42%) said that HIV impacted their decisions on whether to have children.
  • Despite this, half of women living with HIV (49%) described their quality of life as ‘good’ or ‘very good’, while a further 38% called it ‘acceptable’.
  • On HIV prevention, little effort has been made to define who the women at risk of HIV are.
  • Nearly half the respondents (42%) felt that barriers prevent them from testing for HIV.

Read the full report (PDF) or the executive summary (PDF).

Five key asks

The report details a number of recommendations but the writers of the report have five key asks that summarise the changes needed to ensure that women’s needs are met  appropriately in HIV prevention, care, support, research and data in the UK.

  1. Achieve gender parity in the UK HIV response, ensuring equitable investment, priority and attention to women in HIV prevention, research, data and services.
  2. Ensure that HIV research addresses specific knowledge gaps around HIV and women and supports the full participation and meaningful involvement of women.
  3. Prioritise reducing late diagnosis of HIV among women, better explore the use of innovative HIV testing approaches, and improve rates of HIV test offers and uptake in different settings.
  4. Improve data collection and disaggregation on HIV and women, ensure local level data is available, and include sexuality data for women in national reporting.
  5. Invest in HIV support services that meet women’s needs holistically and enable women to not just live well but to thrive, including peer support and support for mental health and gender-based violence.

Social Media Pack – I Can’t Pass On HIV

We’ve created a social media pack to help you promote the spring campaign from HIV Prevention England.

The campaign will launch on Monday 16 April so we urge you not to start using the resources provided until then please.


The campaign will raise awareness that people living with HIV who are on treatment and have an undetectable viral load cannot pass on the virus to someone else sexually, even if condoms are not used during sex.

The tagline for the campaign is ‘I can’t pass on HIV’. All of the people featured in the campaign images and videos are living with HIV.

For more information on the campaign please see our campaign briefing [PDF].

What’s in the pack?

Images: A selection of images for use on Facebook, Twitter, Instagram or any other social media platform.

Suggested posts: Examples of posts for Facebook and Twitter.

Download pack (excluding videos)

Videos: We have four videos available to download separately.

Treatment infographic video – A short animated infographic video explaining the importance of treatment.

Tom’s Story – Tom has been living with HIV for over five years and explains how treatment has changed his life.

Mercy’s Story – Mercy talks about being undetectable and being able to have children while living with HIV.

George’s Story – George speaks about being undetectable and how that has changed his life for the better.

What are we asking people to do?

There are three things that we are encouraging people to do during thing campaign.

Spread the word: People can share information on the campaign messages.

Get tested: Find out if they need to get tested for HIV, where to get tested and the different ways of getting tested by using the tools on our website

Take medication: For people already diagnosed with HIV we are encouraging them to access treatment. This benefits their own health and has the added advantage of not having to worry about passing HIV on to anyone else.

‘I can’t pass on HIV’ – It Starts With Me Spring 2018 Campaign

The spring phase of the It Starts With Me campaign will start on Monday 16 April 2018.

The focus of this phase will be on promoting the impact of HIV medication on prevention.

The campaign aims to:

  • promote awareness and confidence in the message that effective HIV treatment stops the transmission of the virus, based on the evidence supporting this.
  • challenge HIV stigma by sharing real stories of people living with HIV who demonstrate how effective treatment is and that they are not passing on the virus.
  • encourage people living with HIV to continue to take treatment, both for the health benefits it produces and to stop them from being able to pass on HIV.

The campaign will be delivered mainly via online and print advertising.

Campaign briefing

If you would like to know more about this phase of the campaign please have a look at our Spring Campaign Briefing [PDF].

The briefing will provide you with

  • a summary of key definitions.
  • the evidence which demonstrates the effectiveness of HIV treatment on reducing transmission.
  • information on how you can get involved.

Social media pack

We’ve created a social media pack to help you promote the spring campaign from HIV Prevention England.

Remember to sign up to our newsletter to get the latest updates from HIV Prevention England.

Register for our PrEP information seminar in Manchester

PreP Seminar in Manchester

Working together with the PaSH partnership, we will be hosting an information seminar on PrEP in Greater Manchester.

It will be free to attend and will be held on Wednesday 14 March at The Landing, MediaCityUK, Salford.

The session will cover:

  • the ongoing PrEP Impact Trial.
  • how PrEP fits into the HIV combination prevention package.
  • the role of health professionals in ensuring adequate access by those in need.

The seminar targets a broad range of professionals including commissioners, HIV and sexual health professionals, community outreach workers, and general practice and pharmacy professionals.

Register now as places are limited.

National HIV Testing Week Round Up

National HIV Testing Week 2017 launched with much excitement and many activities happening around the country.

On Wednesday 15 November, Prince Harry attended the opening of Terrence Higgins Trust’s HIV self testing Pop-up Shop in Hackney, London, to launch the national campaign at the highest level.

He met with Andrew Bates, a young man who was diagnosed with HIV in 2015, who shared his story and talked about the importance of testing. Prince Harry also met Yvette Twagiramariya, a reporter and one of the faces of the It Starts With Me campaign, who took a live HIV test to show him how the self testing kits work.

The Prince met and talked with some local Hackney residents, and gave each of them one of the self testing kits to take home.

Government and political activity

On the same day, Public Health England (PHE) released new figures which showed that the drive to increase HIV testing is having an impact, with a 21.8% drop in the number of people who are undiagnosed and do not know that they are living with HIV.

The rate of late diagnosis is also decreasing gradually, although it still remains unacceptably high.

Dr Valerie Delpech, Head of HIV Surveillance at Public Health England (PHE), said: ‘This year, there are three firsts in the 30-year history of the UK HIV epidemic.

‘In London, all the global UNAIDS 90:90:90 targets have been met [;] … HIV transmission among gay and bi men has fallen [;] and the death rate among people with HIV who are diagnosed promptly and on treatment is now comparable to the rest of the population. We celebrate these extraordinary achievements which are the result of a comprehensive response involving many key players and organisations. By continuing to invest in effective preventative measures … the elimination of HIV transmission, AIDS and HIV-related deaths could become a reality in the UK.’

In support of National HIV Testing Week 2017, PHE expanded availability of free HIV postal test kits to all areas of England. The additional tests are available to order until Thursday 4 January 2018. Last year more than 20,000 tests were ordered during a similar period and we anticipate that even more will be distributed this year.

This year we had more MPs than ever test for HIV. We worked in collaboration with Yorkshire MESMAC, The African Institute of Social Development, Staffordshire Buddies, Sunrise Family Support, Trade Sexual Health, LASS, Summit House, The Brigstowe Project and The Brunswick Centre to test 16 MPs all around England.

Home Secretary Amber Rudd took the blood test, as did Green Party co-leader Caroline Lucas, Public Health Minister Steve Brine and Labour’s Liz Kendall to promote National HIV Testing Week.

Ms Rudd and a number of MPs tested in their parliamentary offices, while others attended the Terrence Higgins Trust headquarters in London or visited local services in their constituencies.

Afterwards, the Home Secretary tweeted: ‘Despite the look on my face, the pain wasn’t that bad! Just took an HIV test with Terrence Higgins Trust to raise awareness for HIV Testing Week.’

Other MPs who also took HIV tests include: Labour’s Sarah Champion, Peter Kyle, Lilian Greenwood, Gareth Snell, Ian Austin, Thangham Debbonaire, Tracy Brabin, Thelma Walker and Alex Norris, along with Stephen Hammond, Tom Pursglove and Jon Ashworth from the Conservatives.

Mr Kyle, MP for Hove, told the BBC: ‘HIV is a long-term manageable condition and the earlier the diagnosis, the better it is for the patient, so it’s important to get tested no matter who you are.

‘The fear and stigma surrounding HIV is still a barrier to testing, so I hope I’ve shown today that having a test is fuss-free and easy and that I can help make the stigma and fear around HIV a thing of the past.’

Local activity

The GMI Partnership, consisting of Positive East, METRO and Spectra, also launched National HIV Testing Week locally by holding a large-scale rapid workplace HIV testing initiative with Tideway. Tideway is a huge construction project, with approximately 1,000 people on site daily.

Newham CCG staff and partners kick-started a new local HIV programme with a workplace testing event on Friday 24 November, demonstrating a commitment to enhanced HIV testing efforts. A total of 28 staff got tested and the event also received coverage in local media.

Barts Health NHS Trust, in partnership with Waltham Forest Council, provided a range of briefing sessions on HIV and hepatitis C as part of National HIV Testing Week. All the sessions were open to anyone working in a healthcare setting and had a good turnout.

Local authorities commissioned extra activities and promotion in their respective areas, including Croydon, Redbridge, Sutton, Kingston, Hertfordshire and Manchester.

Clinics and community organisations prepared more than 300 additional testing events around the country for people to participate in, which were promoted through the It Starts With Me website. These tests and other events such as information stalls occurred in clinics, pharmacies, libraries, colleges, night venues, and mobile testing buses in Birmingham, Kingston, Redbridge, Buckinghamshire, Somerset, Blackpool, Walsall, Lancashire and many other areas.

Organisations including Terrence Higgins Trust and The Brunswick Centre also gave media interviews to raise awareness of HIV testing during the week and to dispel the stigma people affected by HIV face.

Campaign results

Dr Graham Mackenzie, a Consultant in Public Health, kindly mapped out the Twitter impact of the campaign over the course of the event, and has published a blog showing the results. Over a 17 day period, there were 7,113 tweets from 3,138 contributors, an estimated audience of 19.4 million individuals and 47.5 million impressions.

We are still in the process of gathering data to evaluate the overall campaign. Kantar Public is currently conducting an independent evaluation into the overall reach and impact of National HIV Testing Week to target communities. At the same time, we are putting together an in-house evaluation of the other aspects of the campaign including social media activity, resources ordered, tests delivered, and media coverage.

Your feedback is valuable to us. Please complete a brief, five minute survey to tell us about your experience during testing week and how we can improve in the future.

Thank you for all your support, enthusiasm and dedication to stopping HIV in the UK and participating in National HIV Testing Week to help achieve this goal.