My First HIV Test: Stigma and learning

As a child, I learned from newspaper ads, commercials, and billboards that sexually active people should get tested for HIV every three to six months. The CDC now recommends just getting tested at least once between the ages of 13 and 64 unless you’re part of a high risk group like men who have sex with men, sex workers, or intravenous drug users.

As a quick primer, HIV stands for Human Immunodeficiency Virus. It makes people ill by destroying cells that fight infection (T cells), making the immune system weaker. Without treatment that can suppress the amount of the virus in the blood, an infected person will progress to AIDS, an illness that is the result of a severely weakened immune system. People who advance to AIDS often pass away within a few years after reaching that stage because their immune system can't fight opportunistic illnesses or infections like pneumonia. 

Despite knowing I should have been tested a long time ago, I did not get my first HIV test until Essence Fest this year. I felt hypocritical for not having been tested myself as someone who had been educated on how to encourage other young people to get themselves tested and play an active role in their healthcare. I was just too scared to take the same plunge I had encouraged so many people to take.

In my case, it wasn't that the opportunity to get tested didn't present itself. My university held monthly free testing days, I was connected to tons of community resources in New Orleans that had free testing, and I even have friends who are certified HIV test counselors. I was just scared, like most people, that the result would be positive and I would face the same stigma I tried to educate people against perpetuating.

 Graph showing new HIV diagnoses by subpopulation (race, gender, and transmission category) in 2015. Source: https://www.cdc.gov/hiv/group/racialethnic/africanamericans/index.html

Graph showing new HIV diagnoses by subpopulation (race, gender, and transmission category) in 2015. Source: https://www.cdc.gov/hiv/group/racialethnic/africanamericans/index.html

Motivating my fear are the statistics that Black women and young people ages 15-24 are two of the fastest growing groups for new HIV diagnoses. I fall into both of those categories. Despite HIV becoming increasingly preventable because of interventions like PrEP (pre-exposure prophylaxis) and shifting into the category of a treatable illness thanks to advances in medicine, many people still regard HIV as a death sentence and treat those who are HIV positive like biohazards.  

 Graph provided by the CDC showing the numbers of new HIV diagnoses by age in 2014. Source: https://www.cdc.gov/hiv/statistics/overview/index.html

Graph provided by the CDC showing the numbers of new HIV diagnoses by age in 2014. Source: https://www.cdc.gov/hiv/statistics/overview/index.html

It wasn't until the Saturday of Essence Fest 2017 that peer pressure and the weight of my own conscience convinced me to get tested. I was with a group of close friends who all chose to get tested there. Although no one forced me to go with them, it clicked to me while trying to find an excuse to get out of being tested that day that not knowing wasn't going to make the stress of uncertainty go away, and it certainly wouldn’t help my health in the short or long term if I was positive and didn’t know.

There was a testing center set up on one of the side walls of the convention center on both days of the festival sponsored by the organization Greater Than AIDS. There were seven testing booths next to each other with a hallway in front of them for people to get in and out. The testing booths were separated from the rest of the convention by a long black curtain along which people lined up to wait while we filled out consent forms. The curtain also formed the other side of the hallway. At the exit end of the hallway there was a photo booth set up for people to take pictures holding placards with different slogans like “Know Your Status” and “I Love Me” on them.

At the table next to the testing booths there was a microphone set up where representatives from Greater Than AIDS led info sessions and discussions with different people living with HIV. Between speakers the reps would share information about PrEP and the virus itself to dispel misinformation that people may know based on old science, urban legends, or media portrayals of HIV/AIDS. Beyond the table was a covered tent for people to get a free bag with a t-shirt, water bottle, raffle ticket (for a pair of tickets to that night’s concert) and other merchandise after being tested.

The process of getting tested, from getting in line to making it out of the booth only took about 15 minutes. After filling out a consent form and an information sheet with demographic information (as well as things that could be considered risk factors such as if we had partners with whom we had unprotected sex, if we used intravenous drugs, and the kind of sex we had -vaginal, anal, and oral), we were led to one of the testing booths and placed with a testing counselor.

The counselor went over the process of the test itself, which involved a finger prick and the mixing of my blood with reagents that would determine the presence of HIV-associated antibodies. He told me that the whole process would only take 2 minutes, an even faster rapid test than the 20 minute oral swab test I previously knew of. He let me know that if the initial rapid test came up positive, he would do another kind of test and if that one also came back positive, I would have to go to a doctor for verification.

The rapid test I knew of before this point was the oral swab that took about 20 minutes I learned about during my work with Advocates for Youth. I did some research after I was tested and found out that the one used at Essence Fest was the INSTI rapid HIV blood test approved by the FDA in 2015. Because it is so new, it is still gaining traction for more widespread use. As of now it is mostly used for large scale public testing or mobile testing.

Once I was in the testing booth and seated, the counselor gave me a painless finger prick, drew blood from my finger and put it into a small plastic receptacle that contained a filtration membrane on the bottom designed to hold on to HIV antibodies if they’re present. He then put a clear dilution fluid in the container which revealed a blue “control” spot. This appears so the counselor can know the test is valid. After that, he mixed in a blue color developer, which reacts with the antibodies in the filtration membrane if they’re present and leaves another blue spot in the container if it’s reactive (meaning HIV-associated antibodies are present in the blood). This link goes to the FDA package insert for the INSTI test which breaks the testing process down down step by step. It happened so quickly I was barely able to think about freaking out before he told me it came back negative.

I felt an immense sense of relief. I was able to go back to my friends afterward and talk openly about the stress I felt, and wear the "I Got Tested" sticker with pride because I knew that  I was "okay". But in the back of my mind, I felt uneasy. I wondered if I would have been as happy to talk to my friends about taking the test had I gotten a positive result (after all, I still knew my status which is what was important right?). Would the sticker have been a source of pride still, or a signal of my shame? Would I have told anyone besides my partner? Would I even have had the confidence to write this, knowing that the only thing that would be different is the result I got in the end? I already know the answers to all those questions, and I know I'm not nearly as brave as the people I know that are HIV positive and advocate against stigma and shame.

Although large scale testing events like the one at Essence are designed to fight HIV stigma, they can unintentionally perpetuate it. The reality is that some people find out they’re positive at these kinds of testing events. The fear of potentially ruining what is supposed to be a fun time combined with the waiting period to see a doctor after a rapid test comes up positive, if a person even has access to one, can create an environment where the majority of people who opt to get tested are the ones who are pretty confident they're negative. This environment furthers stigma by making the event more about the pride in getting tested than respecting the potential emotional impact for people who find out they’re positive.   

It's easy for me to talk about my experience knowing that I'm not risking much by doing so. Despite medical advances in treatment for those who have HIV and the activism by and for people living with the illness, HIV/AIDS is still widely misunderstood in our world. Despite all the progress that has been made, HIV stigma still exists and has tangible impacts on the lives of people who are positive.  

HIV/AIDS didn’t become protected under the Americans with Disabilities Act until 2008. Before that time, a HIV-positive person or someone who had AIDS had no legal recourse if they were discriminated against in employment or housing. Even with the legal protection today, HIV-positive people still face discrimination because of outdated ideas about what it means to have HIV.

Not only can HIV-positive people face discrimination, they can face criminal charges in 33 states. The laws relate to not disclosing their status to sex or needle sharing partners, and can be used alongside more serious charges like assault or attempted murder.

The 2013 case of Michael Johnson, also known as the “Tiger Mandingo case" because of his username on gay hookup apps like Grindr, made waves after police pulled Johnson out of class at Lindenwood University, arrested him, and charged him with “'recklessly infecting another with HIV' and four counts of 'attempting to recklessly infect another with HIV,' felonies in the state of Missouri”. The arrest came after Johnson revealed to a past sex partner that he was HIV positive after they had unprotected sex. He was originally sentenced to 30 to 60 years in prison, although the conviction was later thrown out and upheld by the Missouri Supreme Court. Johnson was ultimately granted a new trial. He has since entered a plea deal and will serve 10 years with credit for time served. Louisiana has a similar criminal HIV law, which is a felony with enhanced punishments for people who transmit HIV during commercial (paid) sex.

Discussion about HIV criminalization laws often boils down to some form of the sentiment "it should be illegal because by not disclosing, the HIV positive person is putting others at risk". The reality is that unprotected sex is inherently risky, but people who transmit other STIs that can lead to cancer (like HPV) or other unwanted symptoms (like pelvic inflammatory disease caused by untreated gonorrhea) are not dragged out of class and arrested and charged with crimes. My freshman year of college, there was an outbreak of chlamydia in one of the dorms. People got treated, not kicked out of school. The solution is not to arrest everyone who has an STI, but to stop criminalizing the transmission of HIV. However, that first requires acknowledging that HIV criminalization laws are rooted in misplaced morality and designed to further punish those society deemed as inherently criminal at the time the laws were written: drug users, sex workers, and gay men. Funneling those resources into testing and treatment would go way farther to prevent the spread of HIV than arresting people. 

Sex education is so important for this reason. People should feel empowered to advocate for themselves with sexual partners by asking about a partner's status and knowing their own, and not shy away from using protection for fear of being awkward. Increasing sex education also helps people to understand how STDs and STIs spread and how to treat them if they contract one. 

I still have so much to learn and unlearn when it comes to HIV/AIDS and the stigma that still exists in our communities, but I acknowledge the fact that getting tested in itself as a huge step for me to take and one that others should take as well.

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