Reflections from an HIV Advocate's Journey: Rev. Alexander Garbera

By: Rev. Alexander Garbera, Co-Chair, New Haven Mayor’s Task Force on AIDS 

Life is a circle.  I remember spiking high fevers and having strange rashes in the Summer of 1980 while working on a Psychology master’s degree at Stony Brook University. It was a mystery. Cell phones and the Internet did not exist as we know them today. Information was scarce, and LGBQT persons led a shadowy existence. It seemed that attempted suicides were on the rise, and I believed part of the problem was isolation and a general distrust of established counseling centers.   

I thought creating a dorm-based counseling service might help individuals struggling with gender and issues of sexuality more accessible. A poster hanging outside my dorm door announcing the first meeting was set on fire. It burned through, and if I had been sleeping at that time, I would probably not be writing this blog today. 

Photo Source: Stony Brook Satesman Vol. 23 No. 61 3/14/1980

I was traumatized. The words of the security guard are imprinted in my brain: “You’re a big boy, you can handle it.” It wasn't until the past few years I’ve really become keenly aware of trauma and how it affects us. The counseling project was put on hold and full attention was given to completing my studies, graduation and corporate ladder climbing. 

Having always been health conscious, I regularly checked into a STD clinic every six months. Something seemed strange though around 1984. The Long Island free clinic was re-designed and once open cubicles were now fully shielded by plexiglass. Even-though I never tested positive for any STDs, I was told: “you should go to New York City where homosexuals go. I should go to a homosexual clinic.” I hadn’t the slightest clue why or where to go.  

Employment brought me to CT instead. I found a gay physician and buried myself in my work. When at a Boston training seminar, I met someone. He wanted to move to CT, and so we decided to begin a healthy relationship, starting off with the new HIV test that just came out in 1986. I tested positive and was shocked, after all, I never had tested positive for any STDs… my partner at the time was extremely supportive. He said it did ‘t make a difference to him as he was putting together a portable BBQ grill.   His test results came a week later, also positive. Thus, a journey began but the healthy relationship soon turned out to be anything but. He never wanted to talk about it and didn’t want anyone to know. He acted out by drinking and I acted out by trying to control his drinking.   It was a volatile drama that catapulted me into Al-anon to return the focus onto me and my own sanity. 

At that time New Haven had a very large, strong, vibrant Gay AA and Gay Al-Anon groups that would periodically have joint meetings and annual convention called a Round-Up. It was a godsend. People talked about everything, well almost everything. Nobody mentioned the words HIV or AIDS, and I knew I wasn’t the only one. There is an Al-Anon slogan “Let it Begin With Me” and so I did start talking about my HIV. First at local group meetings, then at Round-Ups in Connecticut and Provincetown, giving workshops on being HIV positive and in recovery. Over the years individuals would bring it up claiming it saved their life.   I was appreciative but always reminded them the life they saved was of their own doing. (I have issues with compliments)

I didn’t do it to help others so much as it was necessary to talk about the feelings of living with HIV, being ejected from a dentist after disclosing my status, navigating life. The gay physician I was seeing frowned when I mentioned taking vitamins and things to boost natural immunity, so I switched to the new HIV clinic at YALE New Haven Hospital.   

It was so new they initially did not have a physical space for people with HIV/AIDS. We were combined within the Gerontology clinic. So, there I was a young gay man in his early 30’s, with an oxygen tank breathing aerosolized pentamadine next to an elderly man hooked up to his oxygen tank looking at me very puzzled wondering what I was doing there.

It also seemed that I never got to see the same provider more than once and felt very disconnected from my own care. When I attended a talk by Dr. Gary Blick, MD who mentioned a more holistic, cutting edge and educational approach I knew that as the right match for me. 

Life is a circle. Thinking of that old man looking at me seems ironic. I am now a senior, over 65 – but not requiring assisted breathing yet.   

In the recent past there have been a slew of workshops/ seminars on HIV and aging, responding to the fact that most people living with HIV are living longer and are now over 50 years old. 

This may seem intuitive as medication’s become less toxic and easier to take. It is not as simple as one might assume. A relatively recent study created headlines that “HIV May Speed Up the Body’s Aging Process” 

Yet, I am not seeing much structural adaptation to our aging HIV population, and non-HIV related medical research tends to exclude people with HIV.   

Accelerated aging issues and increased susceptibility to conditions more prevalent for older persons is not news for those long-term HIV survivors actively engaged in managing their health outcomes. Just as issues of HIV stigma and social isolation echo what many elderly faces. 

The accelerated aging process is what horrified people in the early days of the pandemic — before HIV’s discovery — as young gay man was exhibiting symptoms and dying of rare diseases more typical in elderly populations, particularly around the Mediterranean region. Now that we understand more about HIV and people with HIV are living longer there seems to be much less sense of horror giving way to apathy and ageism.   

We didn’t have the luxury of apathy “back in the day”— a phrase I lifted from a young nurse asking me questions about the 1980’s before he was born. Death was in our face.  People are still dying, but in far fewer numbers. We have also become more clinical about death, even secretive under the cloak of HIPPA and it no longer sparks any outrage. 

Back then, radical right preachers said AIDS was sent from God to punish homosexuals and drug users  (which probably is still around however unspoken). My response was that if it was sent by God, it was sent as a spotlight on our will to live and love ourselves and each other. Perhaps a test of our compassion and readiness of our social and medical institutions.   

Picture: 2006

In a chapter title “Living with Insanity” from Stories From the Other Side: Thematic Memoirs I wrote: “I think HIV/AIDS is here to teach us a few lessons. My fear is that unless we learn them, it is not going to go away and something worse will come along if we keep our heads buried in the sand.”  This came from a metaphysical principle that the lesson never goes away until it is learned.

As a spotlight, HIV has and continues to shine light to many of our phobias and isms: homophobia, transphobia, sexphobia, racism, classism, colonialism, ageism (to name a few) and all the intersections where they inevitably meet.   

If HIV is viewed as a spotlight on aging, it needs a very wide lens. Covid-19 raised the social isolation alarm to a deafening silence.  It wasn’t too long ago that the surgeon warned that loneliness is as dangerous to one’s health and longevity as smoking a pack of cigarettes a day. 

Upon hearing this and knowing the issues of increased susceptibility to certain illnesses and cancers correlated with HIV, the U.S. Surgeon General’s report almost made me want to smoke cigarettes.  

Of the many diverse long-term survivors, I know one of the shared themes is a strong unmet need for socialization, meaningful social interaction, intimacy, and lighthearted fun.

It is curious that in the early days of HIV there was less funding yet more community activities — at least in CT — such as weekend spiritual retreats, support groups, interfaith services, and healing circles. 

While it takes planning and resources to create relevant accessible senior support/socialization groups and creating supportive HIV senior housing, perhaps going back to the early days of HIV buddy programs would be a good/easy place to start?

Another difficult need is finding gerontological expertise in concert with expert HIV care. 

These structural changes require educating our aging HIV population as well as using trauma informed care to address complex post traumatic stressors (CPTSD) from accumulated of years of living with HIV. There are many levels of trauma and HIV stigma, and some can be very scarring, making isolation, however deadly, deceptively preferable. 

Very early on, when many PLWHAs were given only a few months to live, it was clear that survival alone was insufficient. Quality of life matters. 

The word “heal” means “to make whole.” We know what works, and in addition to medication supportive services such as housing, mental health, nutrition is crucial, just as addressing the disparities in health care and outcomes.  

There was a time when HRSA funded complimentary therapies such as medical massage, nutritional supplements, chiropractic care and acupuncture. These therapies helped PLWHAs deal with systemic inflammation, medication side effects, pain, and mobility issues.

With the war launched against opiate abuse I see very little of these alternatives coming back — and pain management an increasing nightmare. I wonder why the proceeds from opiate related lawsuits aren’t being channeled back into holistic therapies.

Quality of life also requires integrating life extension research factoring aging issues as well as the metabolic and inflammatory demands HIV incurs. Current programs directed at the health and well-being of clients such as nutritional programs need adjustments accordingly.  

HIV Aging issues are not academic. They may seem daunting, but the good news is there is much room for growth, change and novel approaches. 

Looking back at everything I would say that one should never underestimate the importance of being able to make a difference in one’s own life and others. Just as Margaret Mead said: “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.”

If people were terrified when young persons were getting old people’s diseases and now those young-ins are old, can we re-ignite, or even approach, the same level of urgency, action, and care?

Picture: 2023

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: Kamaria Laffrey

By: Kamaria Laffrey, Co-Executive Director at The Sero Project

Coming up on recognizing my 20th year of living with HIV in September, I have taken time to anchor myself in gratitude for the life I get to live. When I chose to be public about my status, I wasn’t seeking visibility to propel myself into any position in life, I simply didn’t want another Black, young mother like myself to go through what I went through. Educating about prevention is what started out my advocacy as I was called on to share my story at various events. I was always grateful to be with youth especially and keep up with many of those that I educated as they are adults and have families now. 

The more I told my story over the years, re-disclosing and living through various levels of grief, shame, and trauma, I had to recognize I didn’t live in that space anymore. At 27, I realized I wasn’t the sheltered, scared, insecure, college girl that didn’t know she had a voice. That meant, my narrative had to shift. That meant, I no longer wanted to position myself in prevention education as a cautionary tale. That meant I finally saw my humanity on the level that I wanted others to see me, without the veil of stigma. That was key. 

Then, I doubled down on learning as much about HIV beyond prevention as I could. I focused on treatment adherence and began hearing about undetectable equals untransmittable. I signed up for mailing lists and participated in any free webinar I could to hear folks with years of experience talk about emerging issues and innovative ideas. I found myself showing up at local health events and if sexual health was on the agenda, I made sure to insert HIV. I took up space so that I could learn. 

It opened my eyes to intersectionality and bodily autonomy and I give credit to Positive Women’s Network and The Well Project for introducing me to building this framework in my advocacy. All of this eventually built the path that I am now in serving as the co-executive director of The Sero Project where we center PLHIV leadership to end the criminalization of HIV, mass incarceration, and racial and social injustice by supporting inclusive PLHIV networks to improve policy outcomes, advance human rights and promote healing justice.

When I hear people talk about ending the HIV epidemic, I pause and look for the words between the lines. Twenty years of living with anything can mold you, shape you and form your identity. I have spent 20 years advocating to be heard, valued, healthy, and sustained in my life and that takes a firm place in acknowledging a collective identity. Part of battling the stigma of HIV for me is to never forget who I was before my diagnosis, not just in remembering where I come from but remembering my dreams and goals, aspirations and hopes. I have always been an introspective person, so in my reflection, in my gratitude, I am always assessing, who is Kamaria when HIV ends?  

And that thought never terrifies me, but I am deeply concerned for my community because so many of us have our identities anchored to this diagnosis. I am concerned that when we cling to that, we sometimes get in our own way or jump on a hamster wheel of validation because we are afraid to step into a bold imagination of our future, a real-world and place where HIV doesn’t exist. Public health in concept should be forever, HIV shouldn’t be. 

So, for me, 20 years of living with HIV could have been done in secret and my life would not be what it is today. I am grateful to have met and worked alongside so many courageous people over the years. People who love to and are incredibly talented in their passion to cook, foster pets, braid hair, rock climb, collect Funko pop, create fashion lines, raise their children, garden, knit, and perform spoken word - vastly beautiful beings that have shown me living beyond a diagnosis of HIV and stigma is not just possible, but my right. Liberation is our right. Right?

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: Jax Kelly

By: David "Jax" Kelly, JD, MPH, MBA, President at Let's Kick ASS (AIDS Survivor Syndrome) Palm Springs

It was my first time waking up in a hospital bed. Seventeen years ago I was in a private room at the end of an unusually quiet maternity ward. Attached to a vein in my left arm was one of those drip bags that was supposed to rehydrate me. No flowers or cards. Not even my partner of 14 years.

But I was grateful he brought me here.  

It's unlikely that he brought me to that hospital out of gratitude. I already had been sick for weeks. A cough had lingered so long I could only sleep if I lay on my side at a certain angle. When I bent over in the shower, I had to make sure I took a deep enough breath so I could come back up. At the hospital I was shocked to discover I weighed 144 pounds. My home scale said "65" and I thought the first digital number wasn't working. It turned out the scale had been switched to read in kilograms. But there's nothing like being sick if you want to lose a few pounds!

In the hospital, I had time to assess a lot of things in my life, including my long-term relationship. Laying in a hospital bed and being told you have AIDS can change your world. I didn't have one of those "life flashing before my eyes" moments, but I do remember thinking that if I died I felt I had lived a life with many accomplishments. I could die happy. But with a new lease on life, I started thinking of other clichés: "life's too short", "live life to its fullest" and most of all, "clean house".

I began a journey with a therapist who helped me come to terms with my diagnosis. Physically, I had not seroconverted for over twenty years since the pandemic begun. Emotionally, I had witnessed the shock and horror of uncontrollable disease on a generation I was supposed to gain wisdom and grow old with.The therapy unpacked a lot but took a break when I felt strong enough to find my own path.

The partner is now the "ex," and a new boyfriend has become my husband. My gratitude is shared between my new loves: him and members of the HIV positive community. The weight I regained is thrown around to advocate for HIV and aging services. My breath is stronger and louder to create meaningful change. Now I live with purpose, focus, and ability.

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: Brady Etzkorn-Morris

By: Brady Etzkorn-Morris, Executive Assistant of Global Operations, Prevention Access Campaign

I couldn’t have been more excited when I moved to Nashville in the early spring of 2008. I had just turned 32 and had taken a corporate office job. My career path was falling into place and I felt as if I was finally getting a grasp on “adulting”. However, in July of that same year, my new primary care doctor walked into the room and informed me I had AIDS. Everything around me began to crumble and finding my footing seemed impossible. To help numb the shame and internal pain that came with my diagnosis, I turned to alcohol and methamphetamine which also led to numerous suicide attempts. Thankfully, I had family and friends that came to my rescue and they helped pull me from that dark place.

Having existed in that dark place for so long was one of the biggest reasons I decided to become public about my diagnosis. I realized that while that part of my own story had been written, I could help others to not let their stories sound similar to mine. I became a member of the Nashville Regional HIV Planning Council, Mr. Friendly Tennessee, and various other organizations where I could use my own life experience to create change and to help influence HIV policy on a local level.

Then in 2016, I learned about U=U (Undetectable = Untransmittable), which was the last tool I needed to shed the internalized HIV stigma I had carried since the day of my diagnosis. I was able to use my experiences to influence the Nashville Metro Public Health Department to adopt a resolution supporting the science behind U=U. A U=U Task Force was also formed under the umbrella of our EHE efforts and we became one of the few cities across the country with a local U=U Ambassador program.

When I reflect back on my past 15 years of living with HIV, I now see that so many of the things that I was afraid of happening, never materialized, and HIV gave me so much more than it ever took away from my life; the people I have met along my journey, the love I have received from the HIV community, and my current position working for Prevention Access Campaign has shaped who I am today; and I’m happy to say I truly love this version of myself.

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.

Guest Blog Contributor - A Year of Enlightenment

By: Ranier Simons, ADAP Blog Guest Contributor

This is my last blog post of 2022. It is hard to believe that a year has already passed. It does not feel like I have been a guest blog contributor for an entire year. When I was blessed with the opportunity to contribute, I was unsure of what to expect. As every writer knows, the end product is always the result of creating something from nothing. In the case of this blog, the ‘something’ is not some fanciful creative writing artistic endeavor. The ‘something’ is meant to educate, reveal, inspire action, promote, support, highlight, battle misinformation and in some cases disinformation. Writing for this blog is acceptance of the responsibility to make sure every blog is properly researched, has a purposeful message, and most importantly respects and does not waste the time of those who take the time to read it. 

Photo Source: JerryJenkins.com

I have a master’s degree in healthcare innovation, many years of science and medical education and research experience, firsthand experience as a healthcare worker, life experience as a caregiver, and I am currently a clinical operations healthcare data analyst. However, those things are not why I felt equipped to write for this blog. I felt confident to effectively contribute because I knew I was willing to dig into the jargon-filled weeds of medical journals and other scientific periodicals, scour digital sites of evidence-based discourse, and seek insight from experts in order to distill information into a format easily accessible to all. Communication goes both ways. Real communication happens when information is delivered and the recipients truly comprehend and digest what is given. Medical discourse regarding HIV/AIDS and other related healthcare issues is vast. This makes distillation very important.

My path has crossed with many people living with HIV/AIDS, some of whom have passed due to HIV/AIDS. I have been very close to a good number of them and tangentially exposed to others. Even though I have a high level of exposure to the HIV/AIDS landscape, I was not fully aware of all of the layers before this year of contributing to his blog. I learned about a few HIV/AIDS concepts and related disease etiologies of which I was not previously aware. Researching some of the posts resulted in my discovery of resources I didn’t know about. Most importantly, writing for this blog revealed to me the vastness of the global network of people working towards the eradication of HIV/AIDS on many different levels.

Photo Source: African Constituency

The most important thing I’ve gleaned as a guest blog contributor is how far we have left to go in the fight against HIV/AIDS. Because medical science has advanced to the point of treating it like a chronic disease, on the surface it seems as if the general public doesn’t view it with the same sense of urgency or danger as in the past. However, there is so much more work to be done, so many more people to reach, so many more policies to write and change, so much more research to be done, many more breakthroughs to discover, and multitudes of lives to save.

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.