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What Motivated Me to Become an HIV Advocate: A Conversation with Brenda Simmons

Brenda Simmons has been an HIV advocate for almost 30 years. She is deeply engaged in her Chicago community, and works as an outreach specialist at the Chicago Women’s AIDS Project. She’s currently gearing up to attend AIDSWatch, nation’s largest annual constituent-based national HIV/AIDS advocacy event. I caught up with Ms. Simmons to learn more about her and what fuels her advocacy.

What motivated you to become an HIV advocate?

I’ve been positive for 25 years, I tested positive in 1992. All of the doctors and staff were wonderful, but it was really the peer-level staff who drew me in. They were the ones who really motivated me to stay in care and taught me the importance of taking my meds and things of that nature. So, when I finally accepted the fact that I was positive, I wanted to do that same work for newcomers – people who are newly diagnosed with HIV or people who haven’t been in care.

Peer-level support is so important because we tend to gravitate to people that can relate to our situation. I want to make sure that other newcomers feel comfortable about their diagnosis and let them know that you can live well with HIV.

Tell me more about your role at the Chicago Women’s AIDS Project.

I am the outreach specialist here. I go out to find our participants who have been lost to care and work to help get them back into care. I also supervise our peer ambassadors team. I am training them to become care navigators. Our peers accompany participants to their appointments and are a support system for them.

Recently, we’ve begun collaborating with other agencies in Chicago around health care advocacy. We’ve become activists—we share our stories and talk about the importance of our health care and insurance coverage. Our collaboration is powerful and while we may not always get the outcome we want, at least our voices are heard. I love the work that I do and it’s important that I continue to do it.

What was your experience at AIDSWatch like last year?

I participated in AIDSWatch last year as a grantee of the AIDS United Positive Organizing Project (POP). In the two days before AIDSWatch, I attended a POP convening organized by AIDS United and the US People Living with HIV Caucus. Learning from the other POP grantees about their work and their communities was very powerful. I was taking notes and couldn’t wait to bring everything I learned back to my agency as well as Chicago!

When AIDSWatch began, I got to hear from so many people like Naina Khanna from PWN-USA and Elizabeth Taylor’s family – it was like a dream come true. I’ve learned a lot over the years coming to events like this, and it is so important that there continue to be opportunities for others to learn and become activists as well. Honestly, I was amazed to be around so many other HIV advocates because I was around so much knowledge. I did not feel intimidated, I just wanted to absorb everything that I heard. I want to be able to advocate not just for my community, or my state, but for everyone that is affected by HIV.

What was it like meeting your representative on Capitol Hill?

I had met Congressman Luis Gutiérrez (D-IL) before, but had never had the chance to speak with him before AIDSWatch. I was able to share with him how his decision-making impacts my life. Specifically, I shared how affordable housing is important for me. The reason why I am undetectable and my T-cells are so great is because I have affordable housing and affordable health care. I asked him to continue to support policies that allow me to maintain my health and housing. When he told me I had his absolute support, that made me feel important and heard.

What are you looking forward to about this upcoming AIDSWatch?

HIV stigma is still huge issue, so working to lessen HIV stigma is a big focus. Also, this year the health care issue is huge, specifically relating to the future of the Affordable Care Act and Medicaid as we know it. I want to educate Congress on the importance of health care for people living with HIV, as well as seniors, young people, and anyone who currently gets coverage through Medicaid or the ACA.

I want to tell Congress what it would mean if our health coverage got taken away. Without affordable coverage, I would lose hope for my health and future. My life would change. I look at my medication like oxygen. Without oxygen what happens? You die. This is my lifeline. I really feel like I need to stand up to protect our access to care and share how important it is for me to be able to continue to take my meds.

Why it it important that people come to AIDSWatch this year?

A lot of people feel like HIV hasn’t affected them directly, but this the time we all need to come together and unite in solidarity. We need to come together and allow our voices to be heard. It is going to take a village to create change. Now is the time to sign up and be a part of AIDSWatch and look for ways to be engaged in your local community. It is very important that people get involved.

Thank you, Brenda! It was such a pleasure talking with you and we can’t wait to see you at AIDSWatch!

AIDSWatch, presented by The Elizabeth Taylor AIDS Foundation, is the nation’s largest annual constituent-based national HIV/AIDS advocacy event, bringing together hundreds of people living with HIV and their allies to meet with Members of Congress and to educate them about the important issues at stake for people living with HIV/AIDS in the United States. AIDSWatch 2017 will take place March 27 - March 28, 2017 in Washington D.C.  Learn more!

Posted By: Sarah Hashmall, Communications Manager - Thursday, February 09, 2017

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