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: 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: Lynea Hogan

By: Lynea Hogan

My HIV advocacy journey has been a trail of learning and growing experiences that shaped me to become who I am today; a vibrant fulfilled and alive woman living with HIV. I could not imagine that I would ever be able to say that when I was diagnosed in 1998. Pregnant with my son and unsure of both of our futures I felt alone, swallowed up in darkness and incredible despair. I was one of the lucky ones diagnosed after antiretrovirals hit the market, but my emotional and mental health was what was failing me.

It took 15 years of battling with my diagnosis alone before I took the advice of mental health professionals and attended my first HIV Support Group. I left those meetings invigorated and inspired to dig deep and give of myself completely. My life was forever changed because of it, I gained an entire community of fierce warriors including mentors that guided me into advocacy and community outreach. I also joined the Consumer Advisory Committee in my area of Eastern Virginia and many other community boards dedicated to education, prevention, and the well-being of People living with HIV and AIDS. I am a member of the Positive Women’s Network. I became a Greater Hampton Roads Planning Council member and dived into the Quality management side of HIV care by representing the consumer voice on the Clinical Quality Management Committee of the Virginia Department of Health. I completed certified Peer educator training and volunteered in a rural clinic. Every year I speak with Nursing students and Doctors about the patient perspective, living with HIV. I was honored at the SisterLove Inc. 2020 leading women’s society and received awards of recognition of service within my state.

I have been invited to attend many National conferences on HIV including the Ryan White Conference on HIV, HealthHIV SYNChronicity, ADAP Advocacy Association's 2018 Conference, as well as their 2019 ADAP Fireside chat in Richmond, which was an intimate gathering of stakeholders focused on issues affecting PLWHA in the state of Virginia (i.e., access to care and Ryan White services). I’ve gained so much knowledge from these experiences, they’ve laid the groundwork for a retreat I’ve organized with colleagues to support, inform, and provided fellowship for people living with HIV in the State of Virginia, scheduled for later this year.

The goal in advocacy is to meet people along your journey, learn from them, build networks, and bring others along to complete the mission. I am thankful to the mentors that saw something in me that I did not see in myself and I am grateful they convinced me that it was worth investing in that tiny light that shill shone inside of me. I hope that as I grow and expand upon this work that I have that kind of impact on someone else. Too often we get caught up in our own lives that we do not stop to see that others are carrying the same load but if we work together, we can get so much further.

There is still so much left to do. I find myself thinking about future generations and how important It is that those that come after us are left with a roadmap to where we want to go, not follow our journey but get to the destination. That place is one of love, kindness, justice, and no HIV. I believe it can happen because so many of us are doing the work right now. I want this for my beautiful son who is now a young man HIV negative because of the medications that came in time to save his life. I do this for him.

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.