Upon first glance at the newest study from the National Institutes of Health (NIH), I was immediately exhausted. Too many big words, numbers that I couldn’t quite comprehend, and a flow that seemed to be confusing. As I attempted to break down the study in its entirety, I went from exhausted to annoyed to irritated as everything started to make sense.
What study, you might ask? A new study published in JAIDS earlier this month showed that youth living with HIV are less likely to achieve viral suppression as compared to adults. The Adolescent Medicine Trials Network for HIV/AIDS Interventions (ATN), an NIH-supported network of 13 sites dedicated to the health and care of youth with and at risk for HIV, hosted the study. The youth were enrolled in care through the SMILE (Strategic Multisite Initiative for the Identification, Linkage and Engagement in Care of Youth) collaborative, a network of clinics at each ATN site. According to the study, the SMILE collaborative’s role was “to facilitate a smooth transition from HIV testing centers where youth were diagnosed to clinical care services, focusing on linkage to and retention in the local ATN clinical sites.”
This study included 1,411 youth living with HIV, ages 12 to 24, and analyzed how quickly they were able to achieve viral suppression, or undetectable status. Of the youth in the cohort, 75% of them were enrolled into care, and 34% remained in care, yet only 12% achieved viral suppression after a median interval of five months. Further analyzing the data on the factors that led to viral suppression, the study reported that youth linked to care within a shorter time frame after diagnosis were more likely to achieve viral suppression. Participants who were referred to care between one and six weeks after diagnosis were 2.5 times as likely to achieve viral suppression as those referred to care after three months, and those referred between six weeks and three months after diagnosis were twice as likely. To ensure the shortest possible time to be linked to care, the authors stressed the importance of peer counselors and utilizing text messaging and social media platforms to engage youth in their care and medication adherence.
If you’re anything like me, more often than not, these studies only infuriate you. The main cause of frustration is that advocates across the nation, including myself, have been screaming about this very fact for a number of years now, and then with a study, it seems like all of a sudden we will acknowledge the existence of a problem we could have long ago solved. While this study did provide evidence for what advocates have been discussing for a number of years, it also failed to mention some of the key components needed to truly support viral suppression among young people.
If you want the youth to obtain viral suppression, it is not good enough to contact them via Facebook and make sure they have peer support to take their meds. There are many other factors that need to be addressed thoroughly and effectively when discussing methods to reach viral suppression. While I only have access to the materials and portions of the study that were released, I am just going to assume that the points listed below were not effectively addressed when dissecting this data. But it would be useful if studies detailed the work peer counselors and linkage-to-care specialists do that includes treatment access and adherence, but also helping youth navigate the other issues that impact their ability to engage in care or take their meds daily. Here are some other things that young people need in order to stay undetectable.
How can we expect our youth to take medication every day if housing is unstable? I am not simply talking about a roof over their head, I am also addressing abuse in the home, parental/adult support, low household income levels, etc. This key issue when discussing viral suppression is something we often overlook when discussing youth reaching undetectability, because we assume they have “stable” housing, or researchers sometimes ensure study participants fall within that frame of reference, by eliminating homeless youth from their studies. But studies show that 40% of youth seeking social services for housing are LGBTQ youth. That alone should tell you how difficult it could be to get youth to reach these seemingly unreachable suppression levels; but, of course, it’s not the sole reason.
Make Your Language and Health Care Youth-Friendly and Accessible
Accessibility is not just about reaching out to young people via social media and text messages. It’s also about ensuring the messages that are being sent out can be understood by those who are participating. When talking to youth about HIV and care services, we need to use language that is appropriate to them, for them, and with them; otherwise, we lose them in a world of fancy degrees and big words.
Accessibility also has to do with policies among many doctors, nurses, practitioners, and community-based organizations. I’m a 26-year-old male with the capacity to drive, and if I am more than 15 minutes late to an appointment, I must reschedule my appointment, even if I am in the office with no other patients waiting to be seen. This has happened to me, personally. Now, imagine a 16 year old having to juggle school, life, and a new diagnosis without the possibility of their own car. Let’s say they must rely on friends, family, public transportation, etc. This policy makes it nearly impossible for someone to get into treatment, unless their entire day is cleared and they have 100% “reliable” transportation. Shit happens, people and public transportation suck, and policies like this make it that much harder for youth to get to a clinic or get an appointment to get the medication they may need to obtain viral suppression.
End the Stigma and Shame Around Sex and STIs
When discussing sex, specifically sexually transmitted infections (STIs), providers often talk about them as disgusting or dirty. This, in turn, creates a focus on the negative aspects of HIV and almost immediately shuts the door on any future possibilities of discussing sex or positive aspects of prevention or safer sex. We need to stop acting as if sex is a taboo topic and HIV is a death sentence. If we want youth to participate more often in their own health, specifically in terms of viral suppression, we need to pull the veil off of sex and discuss it from an open, honest, and understanding viewpoint.
So, yes, it should come as no surprise to us that youth struggle with viral suppression. As the study shows, helping them get into care as soon as possible goes a long way. But we must remember that the prescription isn’t the only key to getting to undetectable.