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AIDSWatch 2014: The Power of Advocacy and Sharing Our Stories

Barb_Cardell_Michael_RajnerBy Michael Emanuel Rajner
Steering Committee Member
United States People Living with HIV Caucus (USPLHIV)

As people living with HIV/AIDS, we intimately know the many barriers preventing us from achieving the possible, an AIDS free generation. Despite the discovery of the HIV virus in the 1980’s, our youth continue to be poorly educated on sexual health at homes and in our public schools. Stigma is real and continues to be a factor that not only prevents people from getting tested, but also from disclosing their HIV-status and being linked and retained in high quality care, treatment and supportive services. Los Angeles Clippers owner Donald Sterling recently reminded the world of the many myths we struggle to overcome to combat HIV/AIDS as a matter of public health and not further diminish the human lives struggle with the virus.

While living in New York City, I was diagnosed HIV positive in early 1996 and recall asking my physician to test me for HIV when I contracted Hepatitis B. My physician at the time replied, “people like you don’t get HIV.” I was so startled by his statement because over the last two years at the time, I lost more than a dozen friends to AIDS, some of whom I dated. At the time, as an insurance broker, I wondered what kind of people he was talking about.

When diagnosed, I initially kept my status a dark secret from my family and only shared it with a few close friends until life began to turn upside down and I needed to take time off of work to adjust to the harsh side effects brought on by HIV-medications.

I didn’t engage in HIV-advocacy until I moved down to South Florida and joined the Campaign to End AIDS in 2005. It was my first time visiting Congress to meet with federal lawmakers and Congressional offices on the needs of people living with HIV/AIDS. At the time, as a community, we struggled to harness the political will and power to once again make HIV/AIDS a national priority.

Since that time, I had the pleasure to begin to participate in AIDSWatch back when I was volunteering at the National Association of People with AIDS (NAPWA) as the national community organizer in 2008 and helped organize the delegation participating from Florida. Each year has its own powerful moments. However, AIDSWatch 2014 for me surpassed many of the past experiences.

I’m often critical of our elected officials for not doing enough, but at the same time, in Congress, there are some amazing champions serving and willing to take on our struggle. Our going to Washington DC to share our story and the experiences of our peers are critical to not restore dignity, compassion and respect for our struggle, but it also provides ideal opportunities for leaders to share our experiences with the rest of Congress. A Senator_Bill_Nelsonmemorable example of this was Congresswoman Kathy Castor, who, after AIDSWatch 2009, chose to include the struggle of people living with HIV/AIDS during a Congressional committee hearing on Reauthorization of the Ryan White CARE Act.

This year I served as the state coordinator for Florida and booked a solid schedule of meetings for advocates to share their stories and educate offices on this year’s priorities. Our time with offices was limited and we collectively as a delegation worked together to connect our personal stories and struggles with each of the AIDSWatch priorities. Each office welcomed us and engaged in great dialogue and encouraged us to keep them informed. My favorite part of AIDSWatch was the teamwork and the opportunities to meet people from other parts of the county who are just as passionate about HIV advocacy.

To hear more about AIDSWatch 2014, watch this YouTube video of Barb Cardell, Vice President of the U.S. People Living with HIV Caucus, speaking about her experience this year.

Posted By: Michael Emanuel Rajner, Steering Committee Member, United States People Living with HIV Caucus (USPLHIV) - Friday, May 23, 2014

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