Advocacy is All Year, Not Just in June

Posted on: June 29th, 2023 by Morgan Arnold

Pride Month should be a month to celebrate what you have done for the community and hold up a mirror to reflect on what can be changed across the other 11 months of the year. It is an opportunity to celebrate LGBTQ+ communities and their impact on society. For decades people from these communities have blazed a trail in improving healthcare systems, from shaping the response to the HIV epidemic to fostering inclusive cancer care.

In an age where people increasingly only listen to or trust people like them, knowing how to engage with the community will help brands and campaigns to achieve cut-through. Over Pride Month MHP conducted a series of interviews with individuals working in LGBTQ+ healthcare; we present four key takeaways on organising health campaigns centred around LGBTQ+ people. Applying these principles will give your campaign longevity and cut-through ensuring you are engaging in impactful advocacy for the remaining 11 months of the year:

  • Authenticity

The community has a strong shared identity, formed from years of campaigning for equal rights and building a movement for change when many policymakers wouldn’t listen. Campaigns should aim to put LGBTQ+ people front and centre in leading and visible roles, whilst sharing positive stories from employees and audiences.

The community is naturally distrustful of companies paying lip service to diversity as a way to profit off of them or improve their image. Activists prefer to work with authentic allies, and will research a brand first before doing work with them; however, they are also keen to work with companies with a genuine commitment to improve their allyship and advocacy.

  • Understand your audience and make sure your message is landing

The LGBTQ+ community is not a homogenous bloc. Each age bracket has varying percentages of people who identify as LGBTQ+. For example, 91% of baby boomers say they are ‘straight’, only 71% of Gen Z do. Once other demographic factors have been taken into account shape a bespoke message based on the targeted audience with which you wish to engage. However, understanding your audience is just the start of the process. Community engagement should be end-to-end, from campaign development to launch (and beyond). For example, Invisible Women, demonstrates the problems that crop up when women and their needs are not thought about during service implementation or campaign design, and can be extended to other underserved groups. A lack of data collected on LGBTQ+ people came up in many of our conversations as a reason for campaigns failing to make an impact.

  • Understanding where to find your audience

LGBTQ+ people experience significant barriers in accessing healthcare, with many distrustful of healthcare settings due to experiencing discrimination or having their concerns dismissed. Clinics are known to heighten anxiety in some people – so where clinically possible seek out alternatives, such as LGBTQ+ bars, cafes, internet fora and social media. A good example is ‘Best for my Chest’ who met with people in non-clinical settings and used this as a way to distribute information on breast cancer. A feedback loop enabled the North East London Cancer Alliance to tailor their services to improve outcomes for LGBTQ+ patients.

  • Messaging

The community will engage with the messaging of a campaign if it’s in accessible and inclusive language. Avoid communicating in a jargon-heavy way, which may alienate some people. Crucially, ensure that you are using terminology that respects gender identity and avoids stigmatising your audience. A good example is how the HIV advocacy community has pioneered “people-first” language that aims to portray the population it describes in a non-judgemental way and centre the person rather than the condition in communications.

Knowing how to engage with LGBTQ+ audiences is necessary because they are a marginalised group that at times falls through the cracks in healthcare. Pride Month is always an occasion to foreground issues facing these groups but the struggle for visibility and representation is persistent. Look out for more from MHP on this subject in the coming months about how healthcare services and campaigns can be developed with these communities front and centre.

Halfway to 2030: Equalising the Global HIV Response

Posted on: December 1st, 2022 by Morgan Arnold

World AIDS Day 2022 marks the halfway point of the UN’s SDGs 2030, which set the aims to end all AIDS-related deaths by 2030. The central strategy towards achieving this were the 90-90-90 goals but few countries managed to achieve this by 2020. Infection rates have increased in some parts of the world, and between 2021 to 2022, the number of infections only dropped 3.6%. There is a sense that the Global HIV response is slowing, and that the shift from acute to chronic infection has pushed HIV and AIDS down the policymaker agenda in favour of COVID-19 or other domestic challenges.

MHP’s ‘Networked Age’ research shows that identity and obligation are the primary reason individuals advocate for issues and the two drivers that cut across demographics. Over the years the HIV response has become a less polarising issue that is strongly tied to identity or relatability, and risks being lost in a lengthy list of global issues. Communication and messaging about HIV should seek to ensure the audience feels a personal commitment to care about HIV. Without this there could be a risk of limiting progress to reaching the SDGs.

Four decades since the start of the epidemic, 38.4 million people globally have HIV, and 40 million have died from AIDS-related causes. However, the brunt of the crisis is largely being felt in lower-income countries (LICs), with two thirds of people living with HIV (PLHIV) being in the WHO Africa region. Due to persistent issues of marginalisation, the global response should continue prioritising intersectionality and target populations most at-risk of contracting HIV: young women and girls, LGBTQIA+ people, sex workers and injecting drug users.

The COVID-19 pandemic has disrupted the response towards eliminating AIDS-related deaths and risks undoing much of the progress of the last decade. Beyond experiencing worse outcomes, PLHIV have seen access to screening services, check-ups and treatment disrupted globally. Disparities have widened and health services are stretched in LICs, meaning they are unable to deliver the appropriate care needed at this critical time. This major health crisis, coupled with other significant events such as the war in Ukraine, have shocked the global economy, leading to a reduction in funding for international aid projects, including the HIV response.

That the response depends so heavily on higher-income country (HIC) funding highlights that progress is fragile, and there is a need to ‘shockproof’ it. Continuing to strengthen and expand multilateral partnerships, debt relief in LICs, and reinforcing healthcare systems through sustainable community investments is needed to maintain equal access to resources and end the inequalities that drive AIDS. There is a large gap in all regions between the resources needed and the amounts available for prevention and societal enabler programmes.

15% of PLHIV still do not know their status, meaning 5.9 million are not being provided prompt treatment and may be unknowingly transmitting to others. Stigma makes it harder to bring patients into the treatment pathway. It prevents undiagnosed PLHIV engaging with testing, fearing they could face discrimination and abuse from their peers, family, and employers, despite the potential for serious illness. There is additional hesitancy to access services in marginalised populations, such as LGBTQIA+ people and sex workers, especially where they are criminalised or viewed negatively. Girls and young women —a group that saw one person globally acquire HIV every two minutes in 2021 – have an increased risk of infection from gender-based violence and in some areas are stigmatised for using sexual health services.

HIV-specific laws, such as those criminalizing HIV non-disclosure, exposure, and transmission, further entrench stigma and discrimination. Restrictive laws and policies, such as the requirement for parental consent for adolescents and young people to access services, discourage help seeking. Therefore, without tackling stigma in healthcare, educational, legal, and social settings, then those unknowingly living with HIV may not seek the help they need. Others who know their status but hesitate to attend check-ups and to pick up their medication, may also be impacted.

There needs to be a compassionate approach, increasing awareness of U=U (Undetectable=Untransmissible; PLHIV with an undetectable viral load cannot infect others) tackling misinformation and strengthening human rights legislation. Industry has been playing a valuable role in this, for example ViiV Healthcare’s campaign ‘HIV in View’, shows PLHIV leading normal, happy, and healthy lives, which is possible with access to diagnostic services and effective treatment. Positive examples in the media would reduce PLHIV’s fears of their futures, whilst tackling stigma. Compelling campaigns reflect the needs of the whole patient community, positioning patients as equal partners in their own care to drive and shape healthcare change.

LICs struggle to train and retain researchers and practitioners to address local and regional challenges. This leads to a reliance on external solutions, and an inability to develop their own approaches taking their contexts into account. There is limited access to research funding, and localised challenges or knowledge are generally not focussed on, meaning methods, theories, and insights from HICs are used more often. This ‘trickle-down science’ effect perpetuates the cycle of lack of advancement in LICs scientific capabilities and skews research to HIC priorities.

Voices in these communities are excluded in favour of HIC scientists; for example 96% of all global health conferences in the last 20 years have been held in those countries. MHP’s advocacy principles emphasise the need for community voices and representation. Effective advocacy focuses on compassion, patient-centrism, connection, and identity. Top-down advocacy from large organisations risks depersonalising messaging if the science and voices on the forefront of the HIV pandemic are not front and centre.

Ending the AIDS pandemic is both an ethical imperative and an urgent health and economic priority. Yet, in the age of polarisation in public debate, HIV no longer inspires the strong feelings it once used to, the kind which motivate more vocal advocacy. To compete with other priorities and capture attention, the HIV response needs to reframe itself as a fight against the structural and personal inequalities, grounded in intersectionality, that would build a broader coalition to continue the fight to 2030.