Reflections from an HIV Advocate's Journey: Alecia Tramel-McIntyre

By: Alecia Tramel-McIntyre, Founder & CEO, Positive People Network

Being a Cisgender Black Women who lives in Miami-Dade County, which is the epicenter of newly diagnosed HIV cases, I have a profound understanding of its influences in my life and advocacy work. As I look back over my life, I realize that it has been a long journey to the thriving advocate that I have become today. I was destined for something important, but I would have never thought that my life would become a force for change for myself and others living with HIV.  

There are days in our life that we will always remember, as if it was yesterday. Having my first child on May 29th, 1990. Getting married for the first time when I was 39 and being diagnosed with HIV in October 2000. I even remember the doctor that gave me my diagnosis. And had the privilege of seeing him later in life. 

Today, I have the privilege of being included in some of the best organizations. I am the Founder and CEO of Positive People Network, Inc, a non- profit organization whose mission is to change the quality of life of people living with HIV/AIDS. We focus on education, awareness, social support, and prevention. 

I'm the Florida State Lead for Positive Women's Network (PWN), a member of BTAN Miami, Southern AIDS Coalition consumer advisory board member, CHARM consumer advisory board member for the University of Miami, Florida Community Health Worker Coalition, Florida HIV Justice Coalition member, Miami-Dade HIV/AIDS Partnership member, Chair of the Community Coalition of the Partnership,  Ribbon Organizing Center for HIV Aging Positively (ROC4Aging+) consumer advisory board member, National Community Action Board (NCAB) member, ICWNA board member, Blogger for A Girl Like Me with The Well Project, Florida Rights Restoration Coalition member, Florida HIV/AIDS Advocacy Network (FHAAN) member, Inductee in Leading Women's Society (LWS), a member of The MillionHeiress Club, an Ambassador of Health for Catalyst Miami 2011 – 2022, and a board member of the Women's March Miami. 

I'm motivated to do all that I can to help eradicate stigma. I had the opportunity on the ground level to help re-citizens have our voting rights restored through Amendment 4 as a Field Organizer for Color of Change during the 2018 elections in Florida. Also, I participated as a member of the Florida Organizing for Power team to get the Positive Vote with PWN. I currently serve as the Co-chair for HOPE CAB (HIV Obstruction by Programmed Epigenetics) in California. I'm proud to be a U=U Ambassador for the Prevention Access Campaign. Being a U=U Ambassador, I proudly empower and educate the community on the facts and science of Undetectable=Untransmittable. And more recently, I was engaged as a community partner for the "I Am a Work of ART" campaign. And I have a commercial with the Health Council of South Florida as a part of their Ending the Epidemic campaign currently airing. And yes, I do sleep.

I'm proud to be married to a wonderful man who is also thriving with HIV. We, together, are self-proclaimed Mr. and Mrs. HIV, and we are living our best life. 

There is freedom in living your truth.

"There Is Life After Diagnosis, Live It"

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Reflections from an HIV Advocate's Journey: Venton Jones

By: Venton Jones, MSHCAD, PMP, Chief Executive Officer, Southern Black Policy & Advocacy Network (SBPAN)

In June 2022, I recognized the 15th anniversary of my seroconversion. Reflecting on this huge milestone as a long term HIV survivor, I am humbled by the opportunities I have had to use my story and advocacy to make the world a better place for people living with HIV, communities of color, young people, and those who are part of the LGBTQ community. I would have never thought 15 years ago that I would be running to serve as a Texas State Representative, and becoming one of the first openly Black LGBTQ and HIV positive lawmakers to be elected to a state legislative body in the United States.

On World AIDS Day 2021, I made the decision to run for Texas State Representative in the house district that I grew up in in Dallas. House District 100 is one that is a majority-minority district which has a population of almost 200,000 people of which 80% are constituents representing communities of color. The issues I have championed during my campaign are: healthcare, public education, jobs, the economy, infrastructure (including our power grid), and civil and voting rights.  

During my primary, I faced a lot of obstacles as a person living with HIV and first time political candidate, including an opponent who publicly attacked my HIV status and sexuality on the campaign trail. In the face of these attacks, I continued to run a race that was focused on service to the people, and on May 24th, I earned the Democratic nomination for the seat, and advanced to the General Election with almost 70% of the vote. Now I am continuing the work to win this position against an opponent in the General Election which will take place on November 8, 2022. 

I often reflect on my HIV and public health work over the past 20 years. I am grateful for my roots as an HIV advocate. So many of the lessons about service to the community and fighting for the voiceless started in this work for me. These lessons are ones that are deeply ingrained in who I am today. I stand proudly on the shoulders of those freedom fighters who gave their lives working to abolish HIV for Black and Brown communities. So much of the work that I have focused on during my life and career has influenced my campaign. 

As I continue this legislative race, I continue to ask for the support of the HIV community. Please continue to follow the campaign and support our efforts to increase representation of people of color, the LGBTQ community, and people living with HIV in elected office. You can find out more about my campaign by visiting ventonfor100.com.

Editor's Note: As a tax-exempt, nonprofit organization we cannot endorse Venton's candidacy, however, we did ask him to include a link to his campaign website due to the historic nature of his candidacy for Texas State House District 100. We invite you to learn more about him and his candidacy.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Reflections from an HIV Advocate's Journey: Chunnika L. Hodges

By: Chunnika L. Hodges, Michigan State Lead, Positive Women's Network-USA (PWN)

As I reflect on my journey as an advocate living with HIV, I would say that it has its ups and downs. At some point, I stepped back from the scene for a while. As much knowledge of HIV & experience with PLWH (familial) as I had at the time, I was still unaware of the risk (I was in a monogamous relationship. I say that because messaging surrounding women and HIV, let alone Black women and HIV, was not discussed or seen in 2005! Receiving a dual diagnosis of pregnancy and HIV at the age of 25, I was unprepared for the next steps, asking myself, was I going to terminate my pregnancy or go through this pregnancy? Mainly because of the way the medical professional delivered the news of me now having HIV and being pregnant. Upon entering the room, the doctor was like (after looking at the file), "Ms. Hodges, you're HIV positive and pregnant," and walked out of the door 90 seconds after delivering life-altering news. 

That day in September 2005, six-eight weeks before my 25th birthday, changed my life like I never thought it would. Shortly after giving birth to my daughter, who is now 16 years old and HIV negative (because of the HAART regimen available to prevent transmission during & after the birthing process), I started out doing speaking engagements; from there, it led to me connecting to a group of women just like me "Pregnant and living with HIV." Being a part of this group opened so many doors for me, mainly because I was the only young black woman living openly about her HIV status. I was not blasting from the stands; however, when teachable moments came up, I took advantage of the moment to educate and create awareness of the complexities of acquiring HIV. For instance, even though you may think that you are in a monogamous relationship, your partner may not be in that same relationship. My favorite statement to women when I talk is, "Get Tested…. You do not carry your partner's penis in your purse like it's the American Express Card; You do leave home without it," Meaning have those hard conversations, get tested together (if the opportunity arises), but be more proactive about your Sexual health care needs. Growing up with self-esteem issues, daddy issues, body image, etc., I was a hot mess internally and, therefore, externally, led to relationships that were what we now call unhealthy relationships. From that moment, moving forward, I became involved in any way I could, but not realizing the cost to myself because of the lack of knowing who I was as a Black woman. For a while, I was going through the motions of feelings of unworthy, nasty, low self-esteem, mentally & emotionally not good! I realized I had become a token in this advocacy journey. 

AIDS Walk, 2017

I say that because, before my diagnosis, I was not the confident woman people see today! As I write this blog to reflect, I have realized that my diagnosis has been a curse and a blessing at the same time. If that make sense? Diagnosis of HIV has given me the confidence &purpose to live out loud and unapologetically; also, because I am a unique case of a WLWH, the blessing is that I have not been on medication; only until eight weeks after giving birth to my daughter. The "curse" of this diagnosis is finding meaningful relationships (with self and others). As I reflect, I remember being in spaces where I would share my status and what that means and looks like for me. Some were intrigued by my uniqueness of living with HIV. While some displayed other types of expressions and comments,  like "she ain't got it." Words like this came from my "peers." Hurt like hell, but I never let those people see sweat. However, I internalized those feelings and started feeling like I did not belong in the journey of advocating for PLWH; why you may ask? It was for a few reasons: my story was not like the others I encountered when sharing their story. Not taking medicine, me being open about my status since being diagnosed. Earlier I mentioned that losing myself in this journey came as a cost to me. My identity was wraparound "a black woman living with HIV." But not knowing who I was before my diagnosis was the key to finding myself again. So I took a break from the journey to find out who I was and my purpose on this journey. After taking a hiatus, I came back knowing my purpose of educating about research on HIV and the importance of becoming involved and providing my experience as a black woman engaged in research studies. Some would say, why research? Earlier I spoke about my diagnosis being a curse and a blessing simultaneously. 

Although HIV is living with me, it has not defeated me by far. For the last 15 years, I have not had to take medicine to control or suppress my HIV, and as of 2012, in the National Institute of Health Long-Term Non-Progressor (LTNP) study and 2018, I was noted as an Elite Controller of HIV. Understanding the science behind my case of HIV drove me to become involved in research. The other blessing from this diagnosis has provided me with a privilege. The privilege is that I do not take medicine; having condomless sex before U=U became a hot topic after the Swiss Medical Journal article, and I am mentally strong upon my diagnosis, which remains today. 

Along with sharing my experience as a black woman living with HIV, I am so blessed not to have to experience some of the things other women living with HIV do, such as having the support of family, friends, mentors, etc. Pouring into me genuinely and finally becoming employed in the field has changed my life. Meeting people I never imagined meeting, going places I never thought I would go, etc. I was doing things and involved in projects, advisory councils, and the board of directors for a national network group of women living with HIV. I would not change a thing!  

But the takeaway from this reflection is that there will be times when there will be when you feel like giving up; in those times, remind yourself that it is okay to take a step back to redefine your purpose in this journey. Newly diagnosed with HIV, there is life after the diagnosis; the choice is yours on whether you want to thrive and live or exist. Find Your Tribe and Thrive to your fullest potential.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Reflections from an HIV Advocate's Journey: Kalvin Pugh

By: Kalvin Pugh, Senior Manager for Community Engagement, International Association of Providers of AIDS Care (IAPAC)

I’ve always felt like a rebel. Growing up as a gay kid in a religious home in Kansas will do that to you. My journey into advocacy began like any other advocate – it became personal. On May 22nd, 2016, I was given the results of my routine HIV test. This time, the results were different. I swore at the time that no one who didn’t need to know would.

That opinion changed a few months later after my friends and I were out when someone approached them and told them they shouldn’t be drinking after me. Rumors spread fast in smaller communities but instead of getting upset, I got curious. I became curious about how ideas like that survived the 80s and 90s and the rebellious kid in me wasn’t about to let others define who I was.

So, I turned to social media. I wrote (and rewrote) what I wanted to say, including, “I want to live a life unashamed of my truths, no matter what they are,” before I finally clicked post.

There were certainly a few friends who didn’t want to be associated with HIV. But then came a formative, discreet moment when I was approached by someone who told me that what I had shared had meant a lot and then whispered, “Me too.” That was the first time I understood that if you can say aloud the things others are afraid to whisper, you become a voice instead of a victim. 

After seeing a life changing video online of the incredible Bruce Richman, social media became my soap box where I shared my life and the revolutionary message of Undetectable Equals Untransmittable with anyone who would listen. 

Shortly after, I took a job as a peer educator, where I would worked for four years directly with clients including both newly diagnosed individuals and those for whom staying in care wasn’t easy. Throughout my time there, I learned from the best team of colleagues and a wonderful mentor in my supervisor LaTrischa.

In 2018, I was approached to become a patient ambassador for a pharmaceutical company. I was whisked off to training with nine incredible advocates, many who have become lifelong friends. That experience led to years of speaking engagements, magazine ads, and one TV commercial, which was the first time U=U had been featured in a nationwide campaign in the United States. 

A year ago, I was given the incredible opportunity to serve as senior program manager of community engagement for the International Association of Providers of AIDS Care. To be part of an incredible global team working to end the HIV pandemic has led me to grow, to learn more about myself, but most importantly to put people in the center of everything I do. 

I could talk about awards that sit on my bookshelf collecting dust, but that’s not what I value. It's the moments no one else has seen – the conversations behind closed doors with clients in the clinic, the messages on social media with people from all over the world – that have impacted me the most. Seeing people go from diagnosis and being scared that their life was over to the moments when they realize that their life has just begun – those moments are the greatest reward. 

My journey from my diagnosis to now has been one of incredible privilege, access, and opportunities. It hasn’t been a cakewalk, but I have tried my best, in my own way, to use my privilege and the opportunities that have come to advocate for others.

So here I am six years later with so many lessons learned. I don’t know a lot, but I know that people living with HIV are my people. I don’t want to bring seats to tables that weren’t built for us, but rather build bigger and better tables. I want everything I do to honor those giants whose shoulders I stand on, and to make way for those who will certainly come after. 

I imagine I will always feel like that rebellious kid, but at least now, I’m a rebel with a cause.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.