HIV Glasgow conference: the path to ending HIV stigma

But the conference emphasised a sobering truth: stigma remains one of the most significant barriers to achieving equitable health outcomes for people living with HIV. The message was clear – addressing HIV stigma is not just a moral imperative; it is key to achieving the 2030 goals.

Path to ending HIV stigma

A standout moment of the conference (not least for the bagpipe performance which brought it to a close!) was the opening symposium, “Stigma in HIV: Past, Present, and Future.” Leading speakers, including Dr Katharine Darling representing the European Centre for Disease Prevention and Control (ECDC), Professor Rigmor C. Berg from UiT The Arctic University of Norway, and Angelina Namiba from the 4M Mentor Mothers Network (and board member for the National AIDS Trust), laid bare the profound impact of stigma both on communities living with HIV and the HIV response.

Drawing on recent ECDC research, Dr Darling painted a stark picture of HIV stigma in healthcare settings across Europe and Central Asia. Alarmingly, 69% of healthcare professionals demonstrated significant gaps in their knowledge about HIV prevention and care, and more than half of the respondents said they would be worried when providing care to people living with HIV. Findings like these highlight the urgent need for comprehensive education and anti-stigma training within healthcare systems.

Professor Berg delved further into the effects of stigma, linking it to poor anti-retroviral treatment (ART) adherence, disengagement from care, and increased mental health challenges globally. In the UK, stigma remains a critical issue, with research revealing that seven out of ten people living with HIV avoid accessing healthcare due to fear of discrimination. These statistics were brought to life by Angelina Namiba, who shared powerful testimonies of women living with HIV. One woman described the dehumanising treatment she faced in a hospital: “The nurses and doctors wore double gloves, double aprons, and even masks… They ignored me for hours, calling me attention-seeking.”

Shifting the narrative: community and policy actions

While the harm caused by stigma is profound, the conference also showcased actionable solutions. The ECDC called for targeted education and robust policies to ensure equitable, stigma-free healthcare. Professor Berg presented research showing how that healthcare facilities with anti-stigma policies exhibited significantly lower levels of discriminatory attitudes, proving the effectiveness of institutional change.

One impactful initiative highlighted during the conference was the National AIDS Trust and partners’ HIV Confident charter mark. When an organisation signs up to HIV Confident, they make a commitment and receive support to ensure that people living with HIV can work for them or access their services without fear of discrimination and with confidence.

Community-led interventions are also critical in tackling HIV stigma. Examples noted in Angelina’s presentation include the Our Stories Told By Us book, which celebrates the contributions of African communities to the UK’s HIV response, and creative initiatives like Positively UK’s Catwalk for Power and NAZ’s Joyful Noise Choir, which tackle individual stigma and amplify the voices of people living with HIV.

As Angelina Namiba aptly noted, tackling stigma requires “the knowledge, the will and the power.” Individuals need the knowledge to understand what HIV is, and isn’t, including the fact that it is a tiny virus which does not define who they are. They need the will to change the language that is used to describe HIV and people living with and affected by HIV, which can often be stigmatising. Individuals also need the power to take up prevention and treatment interventions, to maintain adherence to medication and to stay engaged in life-enhancing health and social care services.

Angelina highlighted campaigns such as Chiva’s Life Growing Up with HIV film and Terrence Higgins Trust (THT) and the Scottish Government’s anti-stigma campaign, that have demonstrated the power of storytelling and media in reshaping perceptions.

Turning good practice into Government policy

The conference made it abundantly clear: we know what works to combat HIV stigma. The challenge now is ensuring these solutions are implemented at scale.

The exhibition hall featured organisations and posters on leading research into HIV stigma and successful interventions which can be built upon to inform policy. Governments must lead the way by funding and championing interventions that address stigma and discrimination. From anti-stigma training programmes for healthcare professionals to commissioning peer support, sustained investment is crucial.

The European Stigma & Discrimination Forum, held during the conference, provided a valuable platform for exchanging best-practice and strategising next steps with key partners. The Forum featured presentations from leading advocates and researchers; Garry Brough (Fast-Track Cities London), Catherine Dodds (University of Bristol), Rebecca de Havilland (HIV Ireland), Vanessa Apea (Barts Health) and Eliane Becks Nininahazwe (HIV stigma fighter).

Meanwhile, conference exhibitors like HIV Outcomes presented research that underscores the urgency of addressing stigma. The National AIDS Trust is proud to be represented on their European Steering Group and to provide the secretariat for HIV Outcomes UK. HIV Outcomes’ Call to Action, on display in the booth, advocates for a new EU Action Plan on HIV, prioritising the fight against stigma and discrimination. HIV Outcomes UK’s recently published ‘Beyond the Virus’ report highlights how stigma affects the mental health of people living with HIV in Scotland and presents recommendations for the Scottish Government.

Call to action

The HIV Glasgow conference delivered a clear and urgent message: HIV stigma impacts the community’s quality of life, violates human rights, and holds us back from ending the epidemic. Yet, the solutions are within our reach. Through education, partnership with communities, and bold policies which tackle intersectional discrimination, we can dismantle stigma and get the HIV response on track.

But ending stigma requires collective action and Governments must sustainably invest in evidence-based interventions. The National AIDS Trust, THT and the Elton John AIDS Foundation’s recent report ‘Getting on Track’ highlights the action that we need to see the UK Government take as part of their next HIV Action Plan for England. A key recommendation is ensuring training and awareness-raising programmes are in place in all healthcare settings so that staff have the right knowledge on HIV and no one living with HIV experiences discrimination. Devolved nation Governments must also champion interventions which tackle stigma and discrimination to reach the targets of their HIV Action Plans.

For a deeper dive into the scientific programme and outcomes from HIV Glasgow 2024, you can visit their website here and the conference reporting page here.