HIV the Misunderstood: Medicine, Misinformation, Misdiagnosis, and Mental Health

HIV: The misunderstood virus that’s cure has been elusive. A virus that has garnered a long history of misinformation and severely impacted the mental health of people across the globe. Advancements in medicine and scientific research have made this complicated virus one of manageable nature. However, even with all these advancements, education for caregivers, hospitalists, nurses, and doctors has been minimal at best. The “one size fits all” patient care method is continuing to negatively impact members of the LGBTQ community.  This is a problem. A problem that has not been properly addressed. A problem that I hope my personal experience and story may shed some light on.

Medicine & Misinformation

Why is this a problem? What exactly is being misunderstood? The answer: There is a large level of confusion regarding the medications used to prevent and treat HIV. PrEP vs.  PEP vs.  ART. Still, many doctors have not taken the time to fully understand the difference. For readers that may be unsure of what this difference is. HIV PrEP (Pre-Exposure Prophylaxis) is prescribed to prevent HIV infection. PEP (Post Exposure Prophylaxis) is prescribed following recently known exposure to HIV. This medication is used to reduce the risk of becoming positive. ART (Antiretroviral Therapy) is prescribed to treat HIV-positive individuals. For more information, here is a great educational resource from the Center for Disease Control PrEP | HIV Basics | HIV/AIDS | CDC.

In short, my story is proof that this system needs to change. Education is of the utmost importance to ensure that members of our community do not face these challenges. Doctors’ lack of knowledge has harbored a system that leaves patients like me feeling judged, profiled, and improperly cared for. This makes LGBTQ members reluctant to seek treatment, ask questions, or even be fully honest with their providers. This lack of understanding has severely impacted me as a patient.

Due to my religious family background, they believe identifying as gay leads to becoming infected with HIV. People who “choose” to live that lifestyle are choosing this diagnosis.  This was my only form of “information,” if you can even call it that. Herein lies the problem. There is no factual basis for that belief. The moment I learned about PREP, that little blue pill provided the smallest amount of hope that things might just be OK.

The FDA approved PrEP therapy for HIV in 2012. I requested my prescription in early 2016. It had been four years. The provider did not have knowledge that there was a drug available for HIV prevention. This is problematic. This medication effectively changes LGBTQ lives and is crucial to the health of our community.

In this case, before I was prescribed, I was asked if risky behavior prompted me to request this drug. I was petrified to even participate in sex with a male. Risky behavior could not have been further from my mind at the time.

Misdiagnosis 

In 2016, I was hospitalized for Severe Sepsis Syndrome. The first labs drawn were HIV, STD, and Drug Panels. My story was written in that little blue pill that none of my providers understood. The hospital prescribed an opioid for pain management. Later, I was informed that I tested positive for opiates in my drug screening. I had never done opiates recreationally. At the time, I was a military member; drugs were screened for religiously. My medical history did not include concern for drug use, but it was almost as if I was being coaxed into divulging if I had ever done drugs.

Of course, I had to ask myself, why is this relevant? Why are they treating me as if I am on trial? Confused, out of transparency, I admitted to having tried ecstasy in the past. I had not done it recently but, I wanted to receive proper care.  Shortly after, doctors ordered an ecstasy drug panel. This distraction was preventing me from receiving proper care. I wondered, did I bring this on myself? Am I here because I am gay?

My Story

Following the hospitalization, it was the discharge paperwork that changed everything. Listed as my diagnosis… AIDS (Acquired Immune Deficiency Virus). This was a breaking moment for my family. In my heart, I knew this was a clerical error, but the fear that this might not actually be a mistake was crippling. How was I to know this was a mistake for sure? Come to find out, hospital computer systems have bloodborn infections in the same coding group as AIDS, HIV, and other viruses.

Later, I was notified that while further HIV testing is recommended, they did not believe acute HIV infection was likely, no further HIV testing was needed at this time. This was great news, right? My father did not handle this well. He had a fear, and anger, that he could acquire AIDS from being around me. This made me no longer welcome in my childhood home. That was a defining moment in my life; I did not have anywhere to go. I never really had to ask for help in the past. Growing up as a white male in a conservative, middle-class family afforded me advantages. This time, though, I needed help. A newly made friend in the gay community took me in, a moment that taught me that this community takes care of their own and is the true meaning of chosen family.

Whenever a health complication reared its head, I was faced with the same uncertainty. Doctors approached me with the same lack of understanding. Year after year, the same challenges presented themselves.

In 2017, Insurance denied my PREP therapy, citing the reason as “medically unnecessary.” I found the Gilead Co-Pay assistance program, also known as the Gilead Advancing Access® Medication Co-pay Coupon Card.

In 2018, It was my first STD. This was a moment when I felt some shame. Rather than receiving information on practicing safer sex, I received a concern that I may be putting too much faith in my PrEP.

In 2020, it was hospitalization for abdominal pain. The primary topic of discussion was my sexual history. My after-visit doctor’s notes listed that I was an HIV-positive male with a medical history significant for HIV. Again, I was faced with a sense of confusion regarding my status.

In 2021, it was a provider under the impression I was an HIV-positive male. After that, a prompted discussion explaining my negative status. Then, a patient-to-doctor education session regarding  PrEP’s use as a preventative measure.

During 2022, it was my declining health that insight HIV panels, constant drug screening, questions regarding anxiety, depression, and the state of my mental health.

As I was recounting my experience, it became alarming to me how many different scenarios had impacted me in my medical history. More and more memories of ER visits, and hospital visits flooded my mind. I became even more concerned that the experiences I am sharing were just the most notable in telling my story.

Mental Health 

The longer my medical problems and autoimmune conditions plagued my body, the more I was faced with explaining my status to my doctors. More often than not, the medical professionals I was explaining my status to simply had no understanding of this subject matter. I hadn’t been able to comprehend why my providers had become almost hyper-focused on HIV and sexual health questioning when assessing my medical care. I have multiple negative resulting HIV labs, so many doctors are still confused. This is what led me to one conclusion. The majority of providers do not understand PrEP therapy and HIV prevention.

In order to better understand. Out of necessity, I educated myself on HIV and HIV prevention. There is a sense of confidence in the power of information. If I can immerse myself in this knowledge, why can’t my providers? Do our healthcare professionals want to know more? I could spend time detailing all of the negative interactions I have had in this medical system in relation to addressing my sexual health. However, if I were to do that, this article would be more of a memoir, a story of one gay man’s misfortune. This article is more than a therapeutic recounting of my experience. Our community has been an afterthought for far too long.

In light of this, after everything I have faced, a positive or negative resulting status is not what concerns me. With proper care, I have confidence that if I were to ever test positive, my future will have light either way. My concern is that if this cycle continues, this profiling, this lack of knowledge and training. Our community on a very large scale, will forever be the oppressed, the unheard, the never understood.

If not my story then whose? It is time that the world of medicine acknowledges that the progress made in HIV research, must also translate into patient care. The mental health implications of this negligence should be enough cause alone to initiate change. If you or a loved one is struggling with their sexuality, status, or mental health please seek help somewhere like The Trevor Project | For Young LGBTQ Lives.

In summary, my experience did not give me the answers to my presented questions. But it did give me the strength to ask them. We should all be asking them. The time is now. It is 2023, and I am still facing the same challenges. I suspect many of you are, too. It has been over a decade since pharmaceutical HIV prevention has come out, and our healthcare system is none the wiser. Our health, our lives, and our sanity depend on it.