In 1988 the first World AIDS Day was launched under the theme “A world united against AIDS”; in 2023 the global health community continues to observe it, calling “let communities lead” in the UNAIDS Report 2023. WHO describes World AIDS Day as an opportunity to “reflect on progress”, to “raise awareness”, and to “mobilise all stakeholders” in efforts to “ensure the success of the HIV response”. UNAIDS states that the day allows everyone to participate in campaigns around “specific themes related to HIV”:
- Awareness-raising activities take place around the globe
- People can wear a red ribbon, the universal symbol of awareness of, support for, and solidarity with people living with HIV
- People living with HIV make their voices heard on issues important in their lives
- Groups of people living with HIV and other civil society organisation involved in the AIDs response mobilise in support of the communities they serve and to raise funds
- Events highlight the current state of the epidemic and global response
In this article we examine the report and its implications for the vaccine community in particular; we invite you to share your insights or experience for World AIDS Day 2023.
A call for communities
In the foreword by Executive Director Winnie Byanyima a sobering statistic is stated:
“Every minute, a life is lost to AIDS.”
Despite significant advances in the global response, 9.2 million people with HIV are unable to access life-saving antiretroviral therapy. Every week, 4,000 women and girls become infected with HIV. However, for Ms Byanyima this is “not fate”. Reflecting on the role of communities, she states that we can end AIDS as a public health threat by 2030.
The report is both a celebration of community involvement and a “call to action” to decision-makers, demanding that they empower communities and reduce barriers to community leadership as outlined in the press release:
- Communities’ leadership roles should be made core in all HIV plans and programmes
- Communities’ leadership roles should be fully and reliably funded
- Barriers to communities’ leadership roles should be removed
“Communities are not in the way – they light the way to the end of AIDS. Let communities lead!”
The report
UNAIDS sets an example of community engagement by featuring nine guest essays in the report, each exploring personal experiences of achievements, barriers, and ambitions. Alongside these essays are examples of communities driving innovation and demanding appropriate services. The report suggests that, despite agreeing on targets, the world has “yet to follow through”.
There remains a “host of barriers” to community-led responses, but the report helpfully presents “three vital lessons”:
- AIDS can be ended as a public health threat with communities leading the way. Communities deliver essential HIV and sexual and reproductive health and rights services that accessible, grounded in community needs, and able to reach the most marginalised people. Communities have an ability to advocate necessary policy change and serve as accountability watchdogs. Although community-led responses drive progress in all aspects of the HIV response, the role of community will be critical in traversing the final mile and sustaining gains beyond 2030.
“No other actor can deliver what communities can.”
- The path to ending the AIDS pandemic is obstructed by the restraining of communities’ leadership roles. However, the issue is not just a capacity issue – communities have the knowledge, innovation, and solidarity that is needed to transform national HIV responses.
“They are often blocked from fully leveraging this capacity.”
- The barriers to communities’ leadership roles can be removed, which is in the power of authorities such as national governments, donors, and other stakeholders. This means providing community-led organisations with the resources they need, such as core funding. Furthermore, it means recognising that communities are not in the way. Governments must ensure safe and meaningful space to allow communities to do their essential work, removing punitive laws and policy barriers.
The report delivers a message of “active hope”, recognising that, although the world is “not currently on track to end AIDS as a public health threat”, it can “get on track”.
“For the HIV response to succeed, let communities lead!”
Communities and access to medicine
One area of the report that stands out as pertinent to the vaccine community is the section on affordability of HIV medicines. It suggests that during the HIV “treatment revolution” in the “mid-1990s”, antiretroviral therapy combinations “rapidly transformed HIV from an invariably fatal disease” to a “chronic and manageable” disease. Unfortunately, this change was almost exclusively experienced by people in high-income countries.
“This inequality echoed what had been experience in many other health challenges, in which many years and sometimes several decades were required for the prices of medical innovations to decline sufficiently to enable meaningful uptake in resource-limited settings.”
The report indicates that it was communities who “insisted” that this approach was not to be tolerated, undertaking global, regional, and country level advocacy, pursuing strategic litigation, and engaging with trade and intellectual property processes. The result was a “cascade of actions” that reduced the annual per-person cost of antiretroviral therapy by more than 99%: from US$ 10,000 in 2000 to less than US$50 for the recommended first-line regimen in 2023.
This year, community-led advocacy “contributed to another landmark advance” in the effort for “affordable, universally accessible medicines”; the Government of Colombia decided to list dolutegravir as a medicine of public interest, enabling the purchase of generic versions.
Responding to this section of the report, we are reminded of our interview with Dr Gaurav Gaiha in Washington this year. We know that HIV therapy is a lifelong and challenging aspect of the lives of people living with HIV, so we asked how a vaccine could overcome these issues. Dr Gaiha reflected that, not only would a preventative vaccine be “fantastic”, but a therapeutic vaccine that could “suppress the virus” would be a “huge development”.
“HIV is one of those viruses where vaccine development is very much in line with addressing this issue of access.”
Another of our previous interviews that covers HIV vaccines was with Dr Mark Feinberg, who described HIV as “the most vexing pathogen” that vaccinologists are tackling. His focus in the diseases that had been “forgotten” during the COVID-19 pandemic invites us to consider the diversion of resources that may have happened, and how a ‘catch-up’ can be achieved. He was emphatic that these diseases were not “forgotten” by the people who experience them, and this relates back to the importance of communities and their role in driving innovation and investment.
What does the report demand?
The conclusion emphasises that communities must be kept central to progress.
“The historic achievements the world has made in the HIV response have been possible only because of visionary courageous leadership and action by communities.”
“Communities do not lack commitment, knowledge, or insights, but they do lack the full, unstinting support they need to accelerate progress towards ending AIDS.”
Therefore, the report demands “sufficient resources” and optimal engagement in decision-making. In some countries, community leadership is “compromised by a repressive legal environment and a restrictive space for civil society”. This “treats communities as a problem to be managed” instead of the solution. Finally, the report authors are explicit as they state that the intended audience of their guidance is not the communities, but the governments, donors, and stakeholders who need to “act now, with boldness”.
Community responses to the report
UNAIDS’ statement shares comments from various advocates and community members. Quoted is Robbie Lawlor, Co-Founder of Access to Medicines Ireland, who states that “We are the vehicle for change that can end systematic injustices that continue to fuel HIV transmission”.
“Yet, we are expected to move mountains without being financially supported. We are supposed to fight for a more equitable world and are tasked with dismantling stigma yet are side-lined in crucial discussions. We are at a tipping point. Communities can no longer be relegated to the periphery. The time for leadership is now.”
Minister of State for Development and Africa in the UK, Andrew Mitchell, is “extremely concerned about the exclusion from health services of key populations like the LGBT+ community”. He thanked UNAIDS for “keeping us focused on the inequities” that drive the pandemic and looked forward to collaborating to “champion the voice of people living with HIV” and “end AIDS as a public health threat by 2030”.
Solange Baptiste is Executive Director of the International Treatment Preparedness Coalition and reflects that “community-led action” is the “most important countermeasure” in the AIDS response.
“Yet, shockingly, it isn’t a cornerstone of global plans, agendas, strategies, or financing mechanisms for improving pandemic preparedness and health for all. It is time to change that.”
If you’ve read the report, do let us know what you found most significant or helpful, and share how you might translate this into action!
