In 2019-20, when SAR-CoV-2 first started to make people sick with Covid-19, there was much that scientists didn't know about the virus: how it spreads, whom it affects, how to prevent the illness, how to treat it, even the effects it has on patients. The stigma attached with the illness in the early weeks and months drew comparisons with another virus: the human immunodeficiency virus or HIV which in the 1980s was thought to infect mainly gay men, and led to wider scale discrimination. It took time, consistent awareness programmes and community-led initiatives to beat the stigma and encourage testing and treatment to contain the pandemic.
Ever since HIV was detected in 1959, it has remained a global public health issue. So far, about 40.4 million people across the globe have died due to HIV-AIDS, and 39 million people are living with HIV. In India, approximately 2.32 million people have an active HIV infection.
HIV is not curable yet. However, strategies for prevention, diagnosis, and treatment help in managing HIV as a chronic condition and enables people to have relatively longer and healthier lives. Besides the healthcare sector, communities have played a pivotal role in HIV response worldwide.
On the World AIDS Day 2023, observed each year on December 1, the World Health Organisation has emphasised on recognising and remembering the contribution of communities in controlling HIV-AIDS. This year's theme for World AIDS Day is “Let Communities Lead.” Here's how communities, especially those most affected by HIV, have been demonstrating their resilience, innovation, and unwavering commitment to end HIV by 2030:
Civil societies, community leaders, and HIV program managers among others have been raising awareness for prevention, standing up against stigma and discrimination, advocating testing and treatment for all, and ensuring early access and adherence to HIV treatment.
• They have established support groups, outreach programs, and peer-to-peer education initiatives that have empowered individuals to make informed decisions about their health and well-being.
• They have been actively leading awareness campaigns and health programs and providing valuable information to stakeholders for understanding the needs of the people living with HIV.
• They have held governments and healthcare providers accountable for ensuring equitable access to HIV prevention, testing, treatment, and care services.
• Communities have been and must continue to be at the forefront of shaping HIV-related policies, designing programs, and delivering services tailored to their needs and realities.
• They have helped reach vulnerable, stigmatized and other difficult-to-reach populations.
• Communities have spoken out and fought against stigma and discrimination towards people living with HIV.
• In some parts of the world, they have also ensured that adolescents, youth at risk, pregnant women and infants receive adequate care that incorporates HIV.
• They support health workers to provide HIV services to everyone in the community.
• Communities have encouraged and helped young people take leadership in the AIDS response so that services meet their needs.
Looking at the tireless efforts put by our communities, there are key steps that the society and the government can take to ensure that communities are empowered to lead the HIV response:
• Funding community-led organizations: Providing adequate funding for the community-based organizations to function effectively and be at the forefront of HIV response.
• Building capacity and leadership: Capacity building and leadership development empower community members with qualities required for taking leadership roles.
• Promoting meaningful participation: Developing systems for enabling meaningful participation of community leaders in different aspects of HIV helps in the development, designing and delivery of policies, programs, and HIV-related services, respectively.
• Respecting and protecting human rights: Guiding all actions and tasks around all HIV responses with respect for human rights acts as a strong foundation, which includes the patient's right to a healthy life, discrimination-free environment, and access to justice.
• Acknowledging them: Hearing their voices, valuing their expertise, and empowering their leadership requires a paradigm shift in the way we approach HIV prevention and care, moving away from a top-down approach to one that is truly community-led.
Despite these successes we have achieved with the help of our communities, there are still many challenges to overcome. HIV stigma and discrimination are still wide-spread and affect people’s access to services related to HIV prevention, testing, and treatment. There has also been inequitable distribution and access to health services in the country. Additionally, HIV drug resistance has become a growing concern as well. Therefore, empowering communities to lead the HIV response is not only a moral imperative, but also a strategic necessity.
Communities have the local knowledge, trust and understanding - the essentials to reaching the most marginalized and vulnerable individuals. They are also uniquely positioned to address the social, economic, and structural barriers that perpetuate the HIV epidemic. As we commemorate World AIDS Day 2023, let us reaffirm our commitment to empowering communities to lead the HIV response. By investing in their leadership, we are investing in the future of HIV prevention, treatment, and care. Together, we can end AIDS as a public health threat by 2030.
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