Browsing Category: AIDSWatch

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.Rep_Alcee_Hastings

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.

From Colorado to Washington, DC: An Eye-Opening AIDSWatch Experience

laurie-priddy-pwn-usa-website-photoBy Laurie Priddy
Western Region Coordinator,

Positive Women’s Network-USA – Colorado

I decided to join AIDSWatch 2014 after hearing women from Positive Women’s Network-USA-Colorado (PWN-USA-Colorado) discussing it back in December 2013. I was intrigued because it appeared to be something that would further my knowledge about policy, laws and the power of advocacy.

Sharing our experiences with legislators is imperative. Many times they receive letters without ever seeing us. It isn’t just the visual; it is the expression on our faces, the tone in our voices and the ability to engage our life experiences eye to eye. We break the vision in a legislator’s head of what people like us look like. Our humanness is revealed.

A month beforehand, I knew going to AIDSWatch would require me to suit up and remove the faded Levis and T-shirts that I feel comfortable in. I began looking for an outfit that would look like I could be taken seriously as I approached the suits on the Hill. I had my nails done so they didn’t look like I had just chopped wood or been digging into Mother Earth.

The clothes were in place; now to challenge the mind to retain the facts, the facts, the facts, as well as the personal experience.

The first night in D.C., I joined up with other powerful, fierce and confident women of PWN-USA at a restaurant. As the evening continued, the women from PWN-USA-Colorado energetically discussed our months of learning about the seven issues on the AIDSWatch policy agenda. Barb Cardell, Kari Hartel, Penny DeNoble, Rica Rodriguez, Diane Walker and I huddled around each other as if we were getting the plays for a football game. We were getting close to Monday’s game day. Sleepless night. Early morning.

barb_laurie_tiptonMonday began with us ladies taking a brisk walk to the conference center. The women were pumped up and ready to take on the day and our representatives. During the policy briefings, my head was reeling with concern as to whether I understood and could articulate the information. Sure this information was about issues that affect my life and that I have been living with for the last 25 years; but more important, it was about ENDING AIDS IN AMERICA, and the 1.1 million people living with HIV/AIDS in the U.S. My shoulders didn’t feel wide enough.

As my friend and mentor Barb Cardell and I began our trek to Representative Scott Tipton’s office, I wanted to jump out onto Connecticut Avenue and run. Between complete confidence from Barb and a cab driver reminding me that legislators put their pants on the same way we do, I felt like I had an astral projection right to the front door of Rep. Tipton’s office.

I need to tell you that, when you look at where I came from, where I was standing was one of those life-changing moments. I have always been wonderful at screaming, holding signs, putting friends’ ashes on the White House lawn. But today, I was a woman advocating in a professional manner.

We met with Rep. Tipton’s health expert and began our ask. We discussed the importance of progressive laws in the state of Colorado, such as comprehensive sex education, and that these laws need to be implemented on a federal level. During this meeting I could see in action the morning conference slide that listed the important steps of a Hill visit: A) organize your meeting; B) make it personal; C) do your homework; D) offer solutions; E) keep it short; F) make your ask (“will you support this” and then wait for the answer); G) follow up.

Each one of the women from our group in Colorado took the lead in other representatives’ offices. You were never alone in these meetings; you were backed by your sisters sitting at the same table with you, ready to share their input on something they had studied or even just for straight-out support. I felt so very proud seeing my sisters from PWN-USA-Colorado in action, sharing their knowledge with such poise and articulation. WOW!

Tuesday morning I woke up early to make sure I had a seat at the breakfast conference with Douglas Brooks, director of the Office of National AIDS Policy (ONAP). At this listening session, people living with HIV raised issues that would be taken back to the President. Discussion ranged from Ryan White Part D, to male heterosexual voices, to incarceration, to why we can’t change programs that have proven to work, to employment and labor.

This entire engagement raised the awareness for me that we are more than whiners and protesters; we are women living with HIV and participating in powerful change through our strong knowledge and voices, to ensure that we are part of shaping laws that affect our HIV community.

Many of us come from places where our voices never felt strong or where we could not ask for what we needed. I know this to be a myth. And I know that, when it comes to raising our voices for change, THE RIGHT TIME IS NOW!

Laurie Priddy is the Western Region Coordinator of PWN-USA-Colorado, one of six regional chapters of Positive Women’s Network – USA.

This blog post was adapted from a piece that originally appeared on PWN-USA’s website. Be sure to visit PWN-USA’s website and learn about all of their great work!

Moved to Tears: A Blog from 2014 AIDSWatcher Ed Barron

ed_barronBy Ed Barron
AIDSWatch 2014 Advocate, New Jersey

I have attended AIDSWatch in the past and was excited to be able to participate again. This time — more than before — I felt it important to put a face to AIDS. As a long term survivor having tested positive in 1986, I have survived the “Plague Years.” And though science has made many advances and we are surviving longer there is an even greater need for the Federal Government to finance support services, not only for the newly diagnosed but those of us that are still living. It is important for our lawmakers to realize we would like to live a full life as do all other people living in the United States. The issues me and my fellow advocates addressed are of utmost concern for all of us living with and affected by HIV in our country! This includes the Re-authorization of The Ryan White Program, the full implementation and support of the Affordable Care Act, resolving housing issues through programs like HOPWA (Housing Opportunities for People Living with AIDS), lifting the Federal ban on Syringe Exchange Programs, and repealing HIV discrimination laws. And as we approach the 2015 Budget and Appropriations, it is crucial that our concerns be put on the table. I believe we were successful in achieving that goal.

At one point I actually cried when I was speaking with the Congressman Rush Holt’s (D-NJ) representative. With his retirement, we are losing a great ally, and the compassion shown by his staff member moved me to tears.

The round table discussion facilitated by new Office of National AIDS Policy Director Douglas Brooks, was especially informative. Getting to know AIDS United Government Affairs Director Donna Crews as we waited to get into the room was a wonderful experience, as was connecting with Waheedah Shabazz-El of the Positive Woman’s Network. And what a gift it was to share a room with the one and only Michael Rajner, who shared so much of his experiences with me. And I can’t say enough about Deloris Dockrey from Hyacinth Foundation a true blessing. The awards presentation was not only inspiring but touching. I actually cried when Congressman Waxman spoke. Talking about his journey reminded me of how painful mine was in the beginning. The encouraging tales of the other recipients of the awards was inspiring. Moving me to tears yet again.

The accommodations were exceptional and I have written a letter to Kimpton Hotels who managed the host hotel the Palomar applauding there staff in doing a wonderful job during my stay. I did not hear a single complaint about the staff. My experience at AIDSWatch 2014 far exceeded anything I could have possibly expected. I look forward to participating again next year!

AIDSWatch Blog: Bringing My Personal Story to Capitol Hill

Kayla Headshot

By Kayla Patterson
Pedro Zamora Public Policy Fellow, AIDS United

My father passed away from AIDS in the early 1990s. Since his death, sharing my story has been intimidating because of HIV/AIDS stigma. Whether it is the fear of judgment or the shame that society inadvertently makes people feel surrounding the disease, most people – me included – shut down and hide themselves. AIDSWatch is a forum that allows people living with HIV/AIDS to share their story with legislators so their voices can finally be heard.

I am rarely exposed to Southern California HIV community-specific concerns outside my bubble as a native Northern Californian. Thankfully, I attended three Hill meetings with a group of participants from San Diego that illuminated the daily battles their HIV communities face. I was not only educated on the issues that California faces from a positive person’s perspective, I was also inspired by their courage and strength. Many of them had never been to a meeting with a Congressional office, and I believe all of them felt that their voice was heard, making the entire planning process worth it. I attended four more meetings with the immensely talented and experienced Ernest Hopkins, Director of Legislative Affairs for the San Francisco AIDS Foundation. It was a privilege observing how he maneuvered meetings and communicated with staffers, and I learned many lessons that I will never forget moving forward in my career. Most of our meetings focused on the Housing Opportunities for Persons with AIDS (HOPWA) Program and the lack of affordable housing opportunities in the Bay Area, and many of the staffers assured us that their offices have prioritized affordable housing.

I was proud and honored to be a part of the AIDS United staff for AIDSWatch 2014. The event had such a positive impact on so many attendees. For the first time in many years, AIDS United provided hotel scholarships to many people living with HIV who would otherwise not be able to attend. The most fulfilling and motivating part of the event was witnessing how energized participants were to share their stories. I encourage everyone who participated to continue sharing their stories and inspire others, as you have for me, and continue the dialogue about HIV/AIDS. I look forward to next year and look to seeing even more new participants!