Being an AIDS advocate in Bolivia and in the United States

Gracia Violeta Ross, Legislative Fellow from Bolivia

My name is Gracia Violeta Ross. I am from Bolivia and I have been living with HIV since 2000.  I am the National Chair of the Bolivian Network of People Living with HIV and AIDS (REDBOL), which remains the strongest HIV advocacy organization. In October 2014, thanks to the Legislative Fellows Program supported by the State Department and with the administration of Partners of the Americas, I did my fellowship at AIDS United, an HIV organization based in Washington, D.C. that focuses on domestic policy-making in the United States.

My fellowship was with the Policy Department, which advocates for domestic AIDS funding. It was very important for me to understand how funding decisions are made in the U.S.  I knew some of its international policies but little of the domestic. I was surprised to discover many similarities that fuel the AIDS epidemic in the developing world, such as poverty, gender-based violence, homelessness, lack of access to health services, discrimination of marginalized groups, and social vulnerability, were also in the U.S.  I also learned some of the strategies used by AIDS United that I will try to adopt in Bolivia, although the two environments are very different.

  • Weekly planning meetings. In AIDS United, they have a weekly meeting with the Public Policy staff. The meeting is regularly conducted to check on staff activities for the week, administrative items, and any other urgent issues. I think these meetings are very important. We used to have such meetings but when our tasks grew, we could not have so many meetings, but now I realize not having those planning meetings has made us less effective. One challenge for us as the Executive Committee (equivalent to the policy staff) is that members are not based in La Paz, but in different cities throughout Bolivia. This committee is organized this way because it is meant to be a committee with national representation. We meet four times a year, but communicate twice or more via email, but not everyone reads the emails and when there are urgent matters, I find I have to make the decisions alone.
  • Congressional Briefings seem vital for engaging policy makers in the U.S. We tried this strategy in Bolivia, but not in such an orchestrated manner. I think the idea of focusing briefings on one topic (i.e., women, violence and HIV) is very interesting. We often find many of the local authorities have little or no information about HIV and then we find ourselves teaching them HIV 101.
  • One-one-one meetings with members of political parties for lobbying of issues. We do not engage members of political parties in Bolivia because of corruption. We only engage them once they become staff of the HIV services of the government. This is worth trying again, but also remains risky for us because they will want to buy votes in exchange for support.
  • Formation of advocacy coalitions. We build coalitions with some NGOs, but our joint work has not been formalized as it is in AIDS United. Getting the support of NGOs that are not the usual suspects on HIV, such as the Food and Nutrition Coalition or the STI Coalition, is a great idea since we have many like these in Bolivia. We will have to plan a lot of time before they actually become allies because many tend to ignore the basic information about HIV.
  • Monitoring our communications. We have a website and use some of the social media sites, like Facebook, but not so much Twitter. During my fellowship at AIDS United and with the advice of Cody Barnett, AIDS United’s Communications Manager, I realize its importance. Most U.S. readers use Twitter and if we want our topic to be made known in Bolivia, we will have to strengthen our traffic in Twitter. At this moment, it is just too costly to have one person dedicated just to communications, so we do whatever we can whenever we have the time to do it.
  • Engaging university students in lectures. We used to engage a lot of university students from the medical school, but this demanded a lot of our time and at some point, we had to stop and focus on issues directly affecting people living with HIV only.

Another thing that I also learned was the meaning of time. Most people in Bolivia would consider a 15-minute delay to something acceptable. Punctuality practiced in the U.S. is something we have to learn from this culture and also, the respect for leisure time. I was gladly surprised to see the freedom with which people plan medical appointments and take sick days. Health appointments or sick days in Bolivia are very difficult to get, especially for people living with HIV. It is a major issue of concern. The appointment to pick up medication is set by the clinic to be only in the mornings. Also, you have to be present at the date and time set by health workers, otherwise you might be listed among the non-compliant patients and your next supply of medications might be compromised. Anti-retroviral medications can only be collected in person on a monthly basis. If your employer ignores your HIV status,—the most common case because if you disclose this, you will be fired—many health appointments and sick days will reveal your HIV positive status. This is why many people drop out of treatment.

Not being my first time in DC, I was touched by the singing of birds at dawn, and sightseeing along the Potomac River was very important for me. It is understandable why people choose DC as a place to live and work. In AIDS United, I found a multicultural environment respectful of human rights and gender identity that was an excellent experience. My overall experience is that fellowships like these are very important and I certainly hope someone will come to Bolivia and see how we work there. It was important for me to understand the roots of the domestic HIV epidemic, the ways in which funding decisions are made because the Latino population affected by HIV is growing in the U.S., and because I often represent Latin America and the Caribbean in global boards where the U.S. government is present. I recommend that other people partake in such fellowship programs. Just looking at our area of work is good, but it narrows our vision of how factors that increase HIV interact.

Finally, I want to present a note of sincere thank you to my host organization AIDS United because I realized how difficult it might be to include a person in their very busy agendas. They made all efforts possible to make the fellowship experience an exceptional time for me. I especially want to thank William McColl who took the time to check on me. I was provided with everything that I could possible need. Thank you to Michael Kaplan who gave a welcome and tried to speak in Spanish, and to Ronald Johnson for agreeing to host the fellowship. Thank you to Lorraine Anyango and Eryn Greaney (Zamora Fellows), who provided me with girlfriend friendships, time off, and any kind of support. To Sonja Huh who wondered about the health of my spirit, to Joseph Drungil who talked to me about anthropological topics, to Mathew and colleagues who helped me set up the computer, Donna Crews and Ronald Johnson who allowed me to be part of the Congressional Briefings and other meetings in which I could see other strategies in real time. Thanks to Cody Barnett who set time apart with me to provide me with advice, to the Smile Squad who invited me for coffee and lunch. And to every person who works at AIDS United who came and greeted me every day with a smile, despite that I used my ear plugs, and to all who listened to my story of living with HIV in Bolivia, thank you. I also want to thank the security of the building Dan Isom for his care and advice for using the metro and for checking on me every day.

I also want to thank my sponsors Partners of the Americas for allowing me to take this fellowship. I finished with more knowledge, skills, and understanding and modesty aside, I think they also learned something from me.