Changing lives

The transformative power of NGOs that support people living with and affected by HIV

November 29, 2024
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Photo: UNDP Eurasia

Eastern Europe and Central Asia is one of the few regions where the HIV epidemic continues to grow, with new infections and AIDS-related deaths rising significantly. Despite efforts, only 51 percent of the two million people living with HIV in the region are on treatment. 

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Key populations, including people who inject drugs and their sexual partners, are disproportionately affected. Punitive laws and funding shortfalls further exacerbate the situation.

Despite these challenges, there are inspiring individuals who are changing lives and advocating for a better, more equitable world. 

 

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In Kazakhstan's ongoing struggle with HIV, Oksana Ibragimova stands out as a key advocate. As the director of the Kazakhstan Union of People Living with HIV, her 16-year personal battle with the virus has driven her to influence policies and societal attitudes.

Oksana's mission extends beyond professional milestones to personal growth and societal change. Her primary goal is to eliminate discriminatory laws against people living with HIV, advocating for equality and dignity. She stresses the need for increased government funding and support for community organizations to reverse the rising trend of HIV infections, particularly among vulnerable groups.

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By supporting community-based initiatives, the organization has been successful in expanding services and ensuring stability for those living

 with HIV. She calls for long-term commitments to maintain effective service provision and uphold global strategies to combat HIV/AIDS. As Oksana puts it, “My biggest dream is to eliminate all discriminatory laws against people living with HIV.”

Oksana's leadership not only advances the fight against HIV in Kazakhstan but also inspires collective action and systemic change, promoting health, equality and dignity for all.

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The war in Ukraine has severely disrupted society and critical health services, leaving those living with HIV particularly vulnerable. Before the conflict, Ukraine was already grappling with a rapidly expanding HIV epidemic. Amidst this turmoil, 33-year-old Mariia Bondarenko, emerges as a dedicated advocate for individuals facing the dual crises of war and health.

As the Director of  Light of Hope, Mariia aids those affected by HIV, tuberculosis, drug addiction and viral hepatitis. She combats the virus and the stigma that deters diagnosis and treatment. , “HIV status is a reason for refusal of employment, social interaction and medical care,” she emphasizes. “HIV remains a problem that is not talked about.”

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The war has worsened these challenges, disrupting antiretroviral therapy (ART) supplies and destroying healthcare facilities. In response, Mariia champions social contracting to ensure continued healthcare access for people living with HIV. This approach has solidified partnerships between NGOs and the government, marking a shift towards sustainable healthcare funding and service delivery.

One example of her impact is Andriy, who initially struggled with acceptance and societal rejection due to his HIV status. With support from Mariia and her organization, Andriy began treatment, improved his health and found new hope. Mariia’s advocacy highlights the need for systemic changes to improve HIV services, emphasizing unity, compassion and proactive action in addressing health crises and conflict in Ukraine.
 

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Kazakhstan's HIV epidemic is marked by stigma and discrimination against individuals living with HIV and key populations at risk. Aidar Kapasov, a 34-year-old community organization leader,focuses his work on breaking down HIV-related stigma and underscores the need for comprehensive action and support.

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Navigating challenges such as evolving legislation, securing essential funding and ensuring the availability of health products, Aidar’s commitment remains firm. At the heart of his strategy lies NGO social contracting, which has significantly expanded access to services for people living with HIV.  Still, Aidar champions improvements, advocating for earlier project initiation and extended contract durations to enhance service continuity and impact. As he emphasizes, “Strategic and sustained efforts are paramount. Unity is strength. It’s through our joint efforts that we can drive meaningful change.”

The impact of Aidar’s work is profound, fostering a stronger partnership between NGOs and the government and increasing community engagement. Looking ahead, Aidar envisions continued service expansion and deeper collaboration across all sectors to create a sustainable, inclusive system that meets the needs of all citizens, especially those in need.

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Kyrgyzstan is home to approximately 12,000 individuals living with HIV, facing significant challenges including stigma and discrimination. Elmira Jorbaeva, 54, leads Ishenim Nuru (Ray of Faith), dedicated to battling HIV in the country. With years of experience as an HIV-specialized doctor,  Elmira founded the association with the aim of creating a support community for people living with HIV/AIDS and people affected by HIV/AIDS to favorable conditions for normal human life, which includes access to testing, medication and psychological support, work on adherence to ART, as well as finding lost and hard-to-reach clients.

The escalating HIV epidemic, driven by sexual transmission and high migration, presents a complex challenge in work with people living with HIV. “Many who learn about their positive status refuse ART therapy and registration due to personal beliefs, self-stigmatization, distrust in NGOs, substance dependencies and a lack of awareness,” she notes. This situation is further complicated by high client migration, resulting in lost contacts and accessibility issues.

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Elmira observes that individuals in rural areas face greater challenges than those in urban centers due to a lack of information, absence of NGO support and increased stigma. However, social contracting in Kyrgyzstan has been a turning point.  “Through social contracting, we’ve been able to extend counseling, education and diagnostic services to people living with and affected by HIV, significantly improving their adherence to ART and overall quality of life.”

Elmira envisions a future where public education, training for healthcare workers, and media involvement play a key role in reducing stigma. “Despite the challenges, we remain committed to stopping the spread of HIV,” she concludes.

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UNDP plays a key role in supporting NGOs and individuals in regions where HIV cases and deaths continue to rise. By promoting sustainable financing strategies such as social contracting, UNDP helps ensure the continuity of HIV prevention and treatment services and as well as invest in care economies for other marginalized groups. 

These efforts not only address the immediate needs of affected populations but also yield significant social and economic returns. By improving health outcomes, increasing productivity and reducing healthcare costs, UNDP's support for NGOs offers a viable solution for sustaining HIV responses in Eastern Europe and Central Asia.