HIV Policy and Advocacy Monitor: What informed your original involvement with PLHIV (people living with HIV) advocacy groups?

This is an issue that affects me directly, and this is my home and region. I wanted to bring together the region's PLHIV to address common problems through advocacy. Advocacy efforts are essential to changing the current situation: they enable us to impact both the political environment and the lives of many people in the region, and they help to ensure universal access to treatment and care for PLHIV.

HIV Policy and Advocacy Monitor: How did the CAA PLHIV come to exist?

In some Central Asian countries, PLHIV and their national advocacy networks were strong and had a voice; in others, this wasn't the case. As advocates talked, we realized that our common history and cultural traits could enable us to learn from each other, share our experiences, and elevate a collective voice for the region's PLHIV communities. We created the CAA PLHIV to strengthen the organizational and leadership capacity of member organizations, as well as their ability to more effectively address stigma and discrimination (S&D) in Kazakhstan, Tajikistan, and the Kyrgyz Republic; advocate for equitable access to comprehensive prevention, treatment, and care; and address relevant human rights issues.

HIV Policy and Advocacy Monitor: How does your organization use policy and advocacy in the response to HIV?

In Central Asia, we must study countries' legal and regulatory systems, analyze rights violations, and develop regional and country-level capacity development plans. Our main advocacy goal is to ensure access to HIV treatment and care for all who need it in the region. We have a range of activities to meet this goal -- including advocacy to increase domestic resource allocation and promote harm reduction, incorporating a human rights lens -- but we keep returning to S&D as our key focus. Reducing high levels of S&D is a challenge because donor funding and international exposure are low. We currently focus on service point delivery issues in the healthcare and social services sectors. We may eventually tackle workplace S&D, but for now awareness efforts focus on facilities. We also address internal stigma within the network by combining policy changes within member organizations with human rights trainings.

The CAA PLHIV is not quite a network, but an association and partnership wherein people can learn from each other and strengthen their in-country activities. Each country has its own issues. For example, Kazakhstan's government has committed large amounts of resources to address HIV/AIDS, placing us ahead of other countries in achieving financial sustainability (reduced dependence on donor funding). The association's country organizations work with governments to ensure continued state funding for existing prevention, treatment, and care programs, and to develop state-run HIV programs.

HIV Policy and Advocacy Monitor: What challenges does the CAA PLHIV face?

There are still barriers to accessing adequate treatment and care in Central Asia. Crucial components of clinical care for PLHIV are missing, including nurse home visits, viral load testing, palliative care programs, and the diagnosis, treatment, and prevention of co-infections (e.g., viral hepatitis and tuberculosis) and opportunistic infections.

Antiretroviral costs in Kazakhstan are still high, which affects access to treatment. The CAA PLHIV works with pharmaceutical companies and the Ministry of Health to reduce these costs. In Tajikistan, our organizations still advocate for greater domestic resource allocation; through the association, Kazakh organizations have informed the Tajik advocacy strategy by sharing their experiences and successful strategies.

HIV Policy and Advocacy Monitor: What are the main policy priorities in Central Asia for you and your organization?

Reducing treatment costs is one of our main priorities; this will involve tackling corruption, which continues to be an issue with drug procurement. To support our other S&D work, we want to conduct S&D trainings and advise medical providers on existing policies that protect PLHIV from disclosure of their status. In Kazakhstan, we work with providers to prevent status disclosure and related consequences, such as loss of jobs. We would also like to conduct human rights violations trainings, monitor violations nationally and regionally, and use this information to support advocacy efforts.

HIV Policy and Advocacy Monitor: How does CAA PLHIV plan to regionalize its approach, as opposed to maintaining country-specific advocacy efforts?

While CAA PLHIV is a regional organization that cannot interfere in country politics or policies, or conduct country-level advocacy, our members were able to develop an overall strategy. We develop our member organizations to become strong in-country advocates, and we will continue to push them to improve and strengthen their advocacy and to share their experiences. We can help by bringing international and regional "stars" to talk with governments and civil society across the region, and provide opportunities and forums to share information. However, each founding member organization continues to focus on its own country context to achieve change in country responses to HIV. While the CAA PLHIV may no longer be needed some day, that remains at least 10 years ahead.