Civil Society briefing brings opportunity to (re) engage civil society leaders in HIV response

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The following is a guest post by Andrew Zapfel of Health Policy Plus project, Palladium

ZapfelIn my first job after college, working with adolescents in Buffalo, NY, USA, to prevent the spread of HIV, sexually transmitted infections, and early pregnancy I learned a lesson that stays with me. Without adolescents as part of the planning process, without their community engaged in service delivery, the program would not have the desired impact. I take this lesson and apply it to my work for the USAID- and PEPFAR-funded Health Policy Plus project — a project that supports civil society leaders to engage as partners in HIV policy making, programming, and the delivery of services.

Last week I saw civil society leaders from across the globe convened at the United Nations Civil Society Briefing on HIV last week in New York to discuss the current state of affairs for civil society organizations, express their views, and articulate their demands for an improved global response to HIV. Many came to express serious concerns about current trends in the global HIV response.


Source: UNAIDS,  click to enlarge

The leaders discussed the harmful impact of donor fatigue and the persistent challenges created by stigma and discrimination. If their participation is heeded, the UN will advocate reprioritization of HIV on national political agendas and  member states will commit to sustainably finance the HIV response through domestic resource mobilization, with clear plans to reach key populations to ensure they have access to HIV prevention and treatment.

Since 2006, the United Nations has organized high-level meetings to garner political commitment to the response to HIV and AIDS. Such meetings have led to major political declarations, committing national leaders to strengthening global mechanisms and challenging harmful barriers that prevent access to treatment and/or prevention. The UN is now set to meet again in June 2016 to discuss how far the world has come to ending the HIV pandemic, and how far it has to go to reach the 2030 Sustainable Development Goals.

As we know, an effective response to HIV must include civil society, and global bodies have continued to call for their engagement in the response. Civil society leaders and those living with HIV not only understand the clinical and educational needs in the HIV response, but are fully aware that the HIV response is burdened by rights challenges.

“We will not end AIDS if individual rights are not respected and punitive laws are not removed,” Carolyn Gomez of the Caribbean Vulnerable Communities Coalition, said, She attended the civil society meeting to advocate for a recommitment to, the pivotal role that human rights play in effective responses to HIV.

Rolake Odetoyinbo, a Nigerian HIV rights advocate, agreed. “Respect for human rights and removing laws that make it impossible for most at-risk groups to access prevention and care services must be more than rhetoric on the part of international partners,” she said. This includes a commitment to prioritizing women and adolescents in programming, she said.

Othoman Mellouk of the International Treatment Preparedness Coalition, noted that a backlash against human rights has fuelled the epidemic, especially for stigmatized populations. While national investments in country responses should increase, he said,  “given the ambitious targets that we are setting, countries must be helped and supported. Especially [since], everywhere in the world, we are witnessing an increasing of conservatism fueling in some cases the epidemic especially with regards of the rights of key populations like men having sex with other men, sex workers, people who inject drugs.”

The global HIV community can work to challenge this. Community mobilization and engagement in health and human rights programs for HIV must be a call, not just from civil society, but all partners in the response to HIV. The UN is uniquely positioned to advocate for this at its high-level meeting in June and to continue the call from civil society to do so. We are all also called to do this in our practice. Civil society engagement begins with the choices we make in HIV project planning and implementation: from establishing advisory boards for programs and ensuring that capacity development activities are informed by the voices of those involved to guaranteeing that people living with HIV are actively engaged in all aspects of programming and project monitoring as key stakeholders and not merely as beneficiaries. That’s what we tried to do working with adolescents in Buffalo, New York; what we can learn from those before us; and what we need to improve in our global health community.

Andrew Zapfel is Policy and M&E Advisor for the Health Policy Plus project.

For those who didn’t get a chance to follow the Civil Society Hearings at the UN’s HIV gathering in NYC last week, you can watch the proceedings at the links below:

Part 1:

Part 2:

Press conference:

More information on the UN meeting happening this week and the high-level meeting in June can be found here:

Consulted Works

Human Rights Watch. 2016. The Great Civil Society Choke-Out. New York: Human Rights Watch. Available at:

Rodriguez-Garcia, R. and R. Bonnel. 2012. “Increasing the Evidence Base on the Role of the Community in the Response to HIV/AIDS.” Journal of Epidemiology Community Health 66(S2): ii7-ii8. Available at:

Joint United Nations Programme on HIV/AIDS (UNAIDS). 2014. Fast Track: Ending the AIDS Epidemic by 2030. Geneva: UNAIDS. Available at:

One thought on “Civil Society briefing brings opportunity to (re) engage civil society leaders in HIV response

  1. Susana T Fried

    Dear colleagues:
    I’m in complete agreement with your focus on the importance of active civil society particpation in the upcoming High Level Meeting on HIV. I did want to point out an historical inaccuracy – I’m not sure when the first UN high level meeting on HIV was held, but surely you want to date this from 2001 when the Declaration of Commitment was agreed by the UN General Assembly.


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