The fight against AIDS is not over but we could win if we let communities lead

In 1981, the US Centre for Disease Control and Prevention recognized what was called Acquired Immunodeficiency Syndrome (AIDS) for the first time in injected drug users. Later that decade, findings revealed that a microbe agent transmitted sexually is the most likely cause of the disease by attacking the body’s immune system – it was later identified as Human Immunodeficiency Virus (HIV).

Since then, millions of lives have been affected – around 78 million people have been infected by HIV globally and nearly 35 million have lost their lives from AIDS-related illnesses. In 2022, about 39 million people were living with HIV and about 1.3 million died of AIDS in 2022. AIDS is incurable but therapeutic interventions, such as antiretroviral therapy (ART), can manage symptoms and increase life expectancy.

The disease is a global phenomenon but it's important to note that a significantly larger proportion of its prevalence is in Africa and in parts of Asia, where there are severe socio-economic challenges. The evident disproportionate impact of HIV on lower and middle-income countries means that a community-focused approach will be crucial to fight AIDS.

Over the last three to four decades, the battle against HIV has been a priority for global health agencies and governments.

The Joint United Nations Programme on HIV/AIDS (UNAIDS) was launched in 1996 to lead, guide and strengthen HIV prevention and control efforts worldwide. In 2003, the US President’s Emergency Plan for AIDS Relief (PEPFAR) was set up to control the pandemic in the United States and over 50 other countries, with $100 billion invested since its inception. The Global Fund to Fight Against AIDS, TB and Malaria (GFATM) is another major global organization, with HIV one of its priorities.

In addition, governments have national AIDS control programmes to handle the pandemic at the country level in partnership with various stakeholders.

However, civil society organizations and community groups have also been active and effective in prevention and control efforts worldwide. For instance, India-based non-profit GRAVIS is running a comprehensive HIV and AIDS control programme in the Thar Desert, which addresses inequalities and organizes outreach education sessions to sensitize rural communities and combat stigma. Those living with HIV are encouraged and supported by GRAVIS to access government-provided ART regularly.

Special focus is given to more vulnerable populations affected by AIDS, including older people and women. GRAVIS also facilitates intergenerational dialogues on HIV to raise awareness levels within the communities. So far, it has reached over 2 million people with its interventions.

In 1988, 1 December was named World AIDS Day to raise awareness, strengthen commitment and facilitate global partnerships to eliminate HIV. This year, 2023, will mark the 35th anniversary of World AIDS Day with the theme Let Communities Lead. It presents a significant opportunity to evaluate progress and measure how far we have come and where we go.

Global efforts have led to positive strides in the battle against HIV and new infections decreased by 38% from 2.1 million in 2010 to 1.3 million in 2022. AIDS-related mortality has decreased by 69% in 2022 from its peak in 2004 and since 2010, new infections among children have declined by 58% in 2022. The same year, about 29.8 million persons living with HIV were receiving ART.

Despite such progress, there are several unmet needs and the pandemic is far from over. There is inequitable progress across regions, particularly in low and middle-income countries. More than two-thirds of people living with HIV worldwide are in Africa, where there is a prevalence rate of 3.2 per 100 people. The pandemic also seems to be on the rise in parts of Eastern Europe, mainly among injected drug users. An estimated 9.2 million are still deprived of ART, most in low and middle-income countries.

In 2022, there were 1.3 million new infections and about 630,000 deaths due to AIDS, representing a decline but still significant in number. The number of older people living with HIV has increased from 5.4 million in 2015 to 8.1 millionin 2020, which brings additional challenges in terms of stigma and discrimination. Of great concern is that in 2022, about 130,000 new infections were reported in children.

We need a more comprehensive approach if we want to end AIDS and achieve the 95-95-95 target of UNAIDS – that 95% of the people who are living with HIV know their HIV status, 95% of the people who know that they are living with HIV are on lifesaving antiretroviral treatment and 95% of people who are on treatment are virally suppressed.

Geographic and demographic inequalities will have to be addressed, ensuring low and middle-income countries and vulnerable groups are given greater attention, particularly when it comes to accessing ART and addressing stigma and discrimination.

Centring community voices and perceptions will strengthen people’s leadership and ownership of interventions adapted to local contexts. Further, civil society should be acknowledged as a crucial stakeholder in fighting AIDS, emphasizing building their capacity, allocating resources and ensuring their space for partnerships.

Communities are well-placed to make gains in this journey, and with the long path ahead, we will need them to lead it if we want to eliminate AIDS in our lifetime.