The Total Child

On Their Terms: Expanding PrEP Access for Young People

(National Awareness) Permanent link

 By Kristina Santana, Senior Associate, Prevention & Health Care Access, NASTAD

Every December 1, we commemorate World AIDS Day, a day to honor those living with HIV, those who have died from an HIV-related illness, and the history of the fight. Rooted in activism, people living with HIV and grassroot organizations demanded to not only be a part of the conversation, but lead the conversations around HIV prevention, HIV care, and sexual health. As support strengthens and we continue to bring awareness to all communities, it is important to acknowledge the work still needed and who is still missing from the conversation. With a renewed spirit in HIV activism, we are seeing a wave of young people demanding to be included. 

Data from the U.S. Centers for Disease Control and Prevention (CDC) indicate that of all age groups, young people are the least likely to get linked to care. This impacts their ability to receive treatment and ultimately reach a suppressed viral load. In 2012, only 44% of young people living with HIV had a reported suppressed viral load, which was the lowest of any age group. As a secondary method of prevention, viral load suppression is crucial to decreasing the number of new infections. When the viral load of a person with HIV can’t be detected, then there is no risk of sexually transmitting the virus to an HIV-negative person. As research confirms, undetectable = untransmittable (U=U). In 2015, 22% of all new HIV infections were among young people (ages 13-24).1 When the data is further examined, we see that the majority of new infection cases are among gay and bisexual men. Representative of all age groups, this trend is indicative of larger lapses in prevention and care efforts for certain populations. Despite having a significant decrease in new infections since 2008, this disparity is unacceptable, as we know we have the tools and innovations to eliminate new cases.

Pre-exposure Prophylaxis (PrEP) could be one answer for many young gay and bisexual men. PrEP is a medication that works to prevent HIV by disrupting its ability to replicate. Without replication, acquisition is impossible. Research shows PrEP is up to 99% effective in preventing new infections when taken daily. Yet, to be a successful strategy, young people must 1) know about it and 2) be able to access it.

One of the biggest barriers to access to PrEP for young people is consent. As it relates to sexual health services, in all 50 states and Washington D.C. minors may consent to Sexually Transmitted Infection (STI) services.2 Typically HIV prevention and treatment is included in such services, however, depending on the jurisdiction’s laws, PrEP may not be considered an STI service or as HIV treatment and prevention. Most states have a statute that indicates in the case of an actual or suspected HIV exposure, minors can consent when it comes to diagnosis and treatment. What is unclear is if PrEP is considered a form of treatment for those who were exposed, but did not seroconvert. Legislators and courts need to clarify if treatment will include a prophylaxis, which would include PrEP. If these ambiguous areas are not addressed or clarified, the lives of so many young people could be at risk of seroconverting to HIV.

In addition to consent, confidentiality issues play a central role in impacting young people’s decision to seek care and treatment. In some jurisdictions, when minors are seeking services, providers may be required to inform a caregiver. For example, in Iowa a minor can consent to HIV testing, but if the test is positive then by law a caregiver must be informed of the results.3 Depending on the home life or community of that person, this could potentially be frightening, stigmatizing, or even life-threatening. The ambiguity of consent laws, specifically regarding PrEP coverage, create confusion and additional barriers for all clients and providers. If we are going to continue to reduce new infections among young people, integrating PrEP services with existing prevention efforts (e.g., testing, condom distribution, treatment as prevention) is crucial. That is why it is important to examine how we are promoting access for all young people.

The voice of young people must be heard in the prevention strategies we implement, in the patient-centered care that is delivered, and in the policies that guide decisions. In order to have that voice, we must start holding conversations with young people about PrEP, educating them about its potential benefits, and listening to their experiences. Once we do, then can we truly start moving toward ending the HIV epidemic.