Reflections from an HIV Advocate's Journey

Submitted on Jul 29, 2019 by  Nancy Duncan

My HIV advocacy journey has been twenty plus years in the making, and one I never thought I'd see. I contracted HIV 34 years ago and was very ill for many years. Death loomed over me for several years after my diagnosis in 1990, and I didn’t think I was going to make it. However, I managed to hang on long enough for the new antiviral medications that came out in 1996 and they saved my life!

I was so grateful to have been given another chance at living, so I wanted to give back in some way and it was now my time to step up and help make a difference in my community. I started by sharing my story in high schools in 1998, and then became trained to be a peer educator. Then I discovered a whole network of advocacy on Long Island, New York when I started attending the Consumer Involvement Committee meetings sponsored through the Nassau/Suffolk HIV Health Services Planning Council of which I have been a member since 2007 to present. I’ve done many legislative visits on Long Island to advocate about the needs of people living with HIV and how important the Ryan White funding is for those who are not insured or under insured.


Both POZ Magazine and A & U Magazine took an interest in what I do at Planned Parenthood of Nassau County, where I’ve worked as a peer for 15 years now and did articles about my story of living with HIV, my advocacy and everything else I do. I was proud to be on the cover of POZ magazine since I have no shame about living with HIV. We need this stigma to end! I became a POZ 100 honoree as a long- term survivor that same year and have since been honored with several other awards.

I’ve attended many HIV related conferences, including the ADAP Advocacy Association's Annual Conference for several years now, and I’ve brought back so much valuable information that I always pass along. It’s been such a privilege to meet and network with so many other amazing advocates from all over the country, many of whom have inspired me immensely and have helped my journey blossom. This year, I also received a scholarship to attend HealthHIV's Synchronicity in Washington, DC.


People living with HIV know best what is needed to maintain a good quality of life and advocating to secure our rights for ourselves and one another can help make that happen. Those of us who are willing to put our faces out there can inspire others and help them feel less stigmatized. My message here is to let others know that living with HIV is not the end of the world and there are so many ways we can spin this around and make a difference, even if it’s just a small one. Advocates speak on behalf of all people living with HIV and are the voice for those who cannot speak for themselves. Advocacy may seem intimidating at first but there are many ways we can get involved right in our own communities. Every voice counts and every voice matters when it comes to saving our lives. People ask me why I do so much, well it’s because for now I can and for that I’m grateful.

This blog entry was written for and cross-posted from the ADAP Advocacy Association blog.

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