Charles Shagi Interview

The Omololu Falobi Award for Excellence in HIV Prevention Research Community Advocacy Committee interviewed 2010 Winner, Charles Shagi, a humble pioneering community educator from rural Tanzania.

Below are excerpts:

Qn: You are the 2010 recipient of The Omololu Falobi Award for Excellence in HIV Prevention Research Community Advocacy. Did you expect to be nominated, later on win the Award?

Charles Shagi (CS): It all came as a surprise to me. I didn’t expect it. Our project was about to close, and we were busy preparing for a new one… I didn’t imagine that we could make such headlines, especially after the microbicide we were studying turned out to be ineffective. It was such a pleasant surprise!

Qn: What did getting this Award mean to you?

CS: It meant so much to me. It’s such a special thing to me. It encourages me, it encourages the women we’re fighting for. It confirms that we’re doing the right thing – trying to find solutions to women’s vulnerability – something that’s beneficial and effective for them. It shows that people out there do appreciate what we’re doing for women. It means a lot for me and my colleagues. I just can’t explain it.

Qn: Can you please tell us a little about the work you do with regards to HIV prevention research advocacy? Can you give us an example of when you had to advocate for a change – with whom, and what the outcome was?

CS: We do microbicides advocacy. We interact with the implementation of the research. The study aimed at recruiting women, but I was charged with creating a relationship which would make the implementation of the trial possible – looking at aspects such as creation of a structure that enables community stakeholders to access standard of care. I was charged with ensuring that the process is understood by the potential participants; ensuring that ineligible women – those who were screened out – have access to care; in addition to helping women fight stigma by empowering them and providing them with information on what it means to participate in trials.

In terms of a change I’ve advocated for, it’s around promoting the importance of research. Our communities are more literate about research than many others in the country. One of the benefits that this has led to is the increase in condom use in the cohort that participated in the research. The women all feel that their contributions are acknowledged especially with such international media like the BBC highlighting this work.

Who did we partner with? We have many partners. There is a collaboration between AMREF and University of London, in addition to local partners such as Bugando referral hospital, the National Institute for Medical Research, care and treatment NGOs where we referred women who turned out HIV positive, local media for mass communication in addition to local leaders at different levels.

Qn: Can you also share with us why HIV prevention research community advocacy is important to you?

CS: It addresses issues of stigma and discrimination, all of which affect the research process. It’s important to create a good relationship between the researchers and communities, and advocacy facilitates this. Researchers and communities need each other. For instance, of what help will a microbicide be to researchers if the women on the ground won’t use it? Advocacy helps to build this relationship; creating ground for researchers and end-users to interface and interact.

Qn: Can you tell us what inspires you, or what keeps you motivated to advocate for HIV prevention research?

CS: My background is community development and public health. I saw a missing link between science and the people whom it’s meant to help. I’m a strong advocate for participatory approaches to solving community challenges. I wanted to see communities involved and engaged more meaningfully. It takes time to build these kinds of relationships but it surely pays back. When I see such relationships established, that’s what inspires me.

Qn: Please share some of the challenges you face in your advocacy work and how you overcame some of these challenges? For those challenges that are persistent, we would be interested in your insights as to why they remain and possible ways to deal with them in the future, and perhaps for newer advocates?

CS: One of the biggest challenges is limited literacy resources like guidelines on participatory community engagement. It takes time and thought to get the necessary literacy resources to effectively engage communities. To overcome this, we have borrowed a leaf from other fields like agriculture, seeing how they engage farmers from the grassroots up.

There is also the challenge of limited resources. We’re trying to address this by lobbying funding agencies, including asking funders to prioritize funding for community engagement as much as they prioritize funding the science. In addition to this, we ask local stakeholders to understand that this work is a joint venture, and thus the need for them to contribute too. Some of them have these resources locally, and we ask them to contribute whatever they have e.g. Bugando referral medical centre accepted our referrals, giving free treatment to HIV positive women that were screened out of the research; Nyakato AIDS outreach provided resources in general HIV education – they intergrated it into their ongoing activities; while the Mwanza Press Club – a union of all media houses in Mwanza offer us free airtime on electronic media like radio and television, in addition to free media coverage of our work. These are big contributions from our own community.

Qn: In your view, what can be done to support advocates more and to recognize their contribution to the field?

CS: Creating guidelines on community engagement would be helpful. Also, creating a forum where advocates in resource-limited setting s can share experiences and collectively advocate for additional funding would be great. I believe that if advocates are able to meet periodically at the local, regional and international levels it would be helpful to share and modify ideas. The other thing that would be helpful is to teach and empower advocates to document their experiences so that they can then share them with others. A lot of good work is not seen or replicated because it’s not published. Finally, I think awards like the one I received do play a good part in motivating advocates to carry on this good work.

Qn: Advocacy work is generally hard to measure; how can the contributions of advocates like you be possibly measured?

CS: It’s very difficult to measure it, but it can be tied to other pillars. Policy change is one of them. If your advocacy is towards an enabling environment for research, this can be measured by seeing favorable policies developed and implemented. That’s measurable. If your advocacy is towards increasing domestic financing of research efforts, an increase in the domestic expenditure on research is an indicator. Of course, it’s hard to tie it to a single individual or organization, but if such an individual or organization was involved in efforts to ensure that there is budgetary allocation for research, then that’s a measure of their success.

Qn: If you knew Omololu, can you please share a few comments on how you knew him and what his contribution meant to the field of HIV prevention research?

CS: I didn’t get the honor of meeting Omolulu, but I read his articles. I think he was a daring advocate. He was very forceful, and wasn’t someone that would be pushed over. He was very strong and a strategic advocate.

Qn: How do you think we can improve the Award nomination or recognition process?

CS: There’s need to publicize the Award. I tried to reach networks in Tanzania to publicize it by reaching out to the media so that they can participate in future processes. We need to create an African forum where all advocates can “meet” and share as one.

Qn: What would be your advice to other advocates, especially those beginning their work in HIV prevention research advocacy?

CS: To strategize. They need to look at several aspects of their work. To package their work such that it looks at several aspects around what they advocate for, putting in mind such things as culture, education, fundraising etc. They also need to take time to develop comprehensive programs.

Qn: Any other comments or ideas?

CS: I just want to thank AMAG, AVAC, GCM and others who recognize the need to award community advocates, and who foster interactions, and I encourage them to continue committing resources to this. This is a very young initiative and there’s need to nurture future leaders in the field. HIV prevention advocacy is part of the solution to a lasting solution to HIV/AIDS. It should be prioritized by all. Emerging advocates should be encouraged and supported.