Issue: June 2019
June 14, 2019
11 min read

Teen PrEP use a critical ‘piece of the puzzle’ to ending HIV transmission

Issue: June 2019
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During his second State of the Union address, President Donald J. Trump announced a commitment to end the HIV epidemic in the United States in the next decade. This means cutting new HIV infections by at least 90% by 2030.

The CDC reported that 38,739 new HIV diagnoses were made in the U.S. in 2017, with youth aged 13 to 24 years comprising nearly one-quarter of the diagnoses. Of these cases, 87% were young men — most acquiring their infection through male-to-male sexual contact (93%). Infections among young women were often acquired through heterosexual contact (86%) or injection drug use (11%).

HIV testing and treatment as prevention are both huge components of the national effort to end the HIV epidemic. Another important piece is pre-exposure prophylaxis, or PrEP (emtricitabine/tenofovir disoproxil fumarate, Truvada). Initially indicated for adults in 2012, PrEP was approved last year for teens.

Hyman M. Scott, MD, MPH, medical director of clinical research at Bridge HIV in the San Francisco Department of Health, said teens may not be as afraid of HIV today as they were during the height of the epidemic in the mid-1980s — a change in attitude that may actually have a positive impact on the pervasive stigma surrounding the disease.
Source: Hyman M. Scott, MD, MPH

According to the CDC, PrEP can be more than 90% effective at preventing HIV infection if used consistently, and it was up to 99% effective in studies in which therapeutic blood levels were measured. The agency, along with the U.S. Preventive Services Task Force, recommends PrEP for the estimated 1.1 million Americans who are at increased risk for HIV. The AAP also advises pediatricians to counsel their adolescent patients who are at increased risk for sexually transmitted HIV infection about PrEP in The Red Book.

However, results published in the Annals of Epidemiology by Siegler and colleagues suggest that only 10% of the at-risk population are prescribed PrEP. Broken down by age, only about 11% of those who take PrEP are young adults and adolescents.

Infectious Diseases in Children spoke with HIV and public health specialists to better understand the barriers to HIV prevention among teens and how PrEP uptake can be improved in this age group to get one step closer to ending the HIV epidemic by 2030.

Barriers to use

Renata Arrington-Sanders, MD, MPH, ScM, an associate professor of internal medicine and pediatrics at Johns Hopkins University, told Infectious Diseases in Children that youth face numerous obstacles to accessing and adhering to PrEP.


“I really try to think of the barriers to PrEP from an ecological framework, meaning there are individual barriers, but there are also more community-level barriers and system barriers that exist against taking PrEP,” she said.

Renata Arrington-Sanders

To begin with, Arrington-Sanders suggested that many adolescents may not perceive that they are at risk for HIV. She also said teens may not have experience taking a pill every day, raising the possibility that they will not adhere to the medication.

One study published in the Journal of the International AIDS Society showed that during a 2-year period, only two of every five users persisted on PrEP, and those aged 18 to 24 years had the lowest levels of persistence between initiation and follow-up 2 years later.

Additionally, teens can have difficulty getting a prescription for PrEP. Susana Williams-Keeshin, MD, assistant professor of pediatrics and internal medicine in the division of infectious diseases at the University of Utah, said pediatricians do not usually see their adolescent patients on a frequent basis, and therefore have more difficulty reaching out to them about PrEP.

“Oftentimes, if adolescents are talking about sex or even having STD symptoms, they don’t go to the pediatrician,” she said. “They go to an STD clinic or a Planned Parenthood. Those places don’t always have the ability to talk about PrEP because they’re trying to focus on STDs or other things.”

PrEP can also be costly, with an average wholesale price of more than $2,000. Gilead Sciences, the manufacturer of Truvada, announced last month that a generic option would be available in 2020. Gilead and HHS recently agreed to donate PrEP to 200,000 individuals a year until Dec. 31, 2025.

An MMWR published in 2017 showed that confidentiality is a major concern for teens who may ask about PrEP. Nationally, 12.7% of sexually experienced adolescents and young adults who were on their parents’ health insurance plan said they would not seek sexual and reproductive health care because of concerns that their parents might find out. The percentage was even higher among those aged 15 to 17 years (22.6%).

Teens seeking PrEP who are covered by their parents’ health insurance may have additional concerns that receiving a bill for the medication may inadvertently disclose their sexual orientation or that they are sexually active to their parents. Hyman M. Scott, MD, MPH, medical director of clinical research at Bridge HIV in the San Francisco Department of Health and an assistant clinical professor of medicine at the University of California, San Francisco, told Infectious Diseases in Children that this concern is valid.


“This has happened,” he said, “and it has real implications for young people who are trying to access PrEP.”

According to Michelle Collins Ogle, MD, FAAP, AAHIVS, medical director of the adolescent AIDS program at Montefiore Hospital, physicians should be familiar with the laws in their area concerning who can receive health care without parental consent.

“I find that one of the biggest barriers to care in general is that providers just don’t know what the ages and laws are for their jurisdiction to be able to perform appropriate screening in kids,” she told Infectious Diseases in Children. “You might think that you can’t provide PrEP for a 14- or 15-year-old when, actually, your jurisdiction says that it’s perfectly acceptable to do HIV testing, screening and treatment for a 13- or 14-year-old.”

Stigma remains another significant barrier to accessing PrEP. Although incredible advancements in HIV treatment have changed the illness from a death sentence to a manageable chronic condition, many people do not wish to discuss the topic. Arrington-Sanders said some people will not even get tested because of the fear of learning their HIV status.

Fast Facts

“We still see people not willing to take information about HIV prevention at a resource table because they are concerned about how people are going to perceive them,” she said. “That is surprising in this day and age. If HIV were viewed as just a chronic illness, then this shouldn’t be a barrier. If we did not have the stigma associated with it, then we shouldn’t see people not willing to take information and not willing to be tested.”

Youth who did not live through the worst of the AIDS epidemic may not have the same level of concern about the disease. However, Scott said this has had a positive influence on how teens seek HIV prevention.

“I think young people are not as afraid of HIV, and they should not be as afraid,” he said. “The fear has led to a lot of HIV stigma that has undermined a lot of our treatment and prevention efforts. The first step is to undo some of that stigma. One of the things we hear from people on PrEP is that it empowers them to take control of their sexual health and engage with individuals who are living with HIV in a way they might not have done in the past.”

Provider attitudes

Before practicing medicine in the Bronx, Ogle provided HIV care in rural North Carolina. The Southern U.S., according to findings from Siegler and colleagues, accounts for nearly 50% of new HIV cases, but PrEP uptake is low.


Ogle said that while working there, many providers were hesitant to provide PrEP to their patients or denied requests for the medication. Although many physicians throughout the country support PrEP use among those who need it, Ogle said it is not uncommon for some to deny it to patients because of their own personal beliefs about sex and lifestyle choices.

“I’ve talked with many providers across different parts of the country. We’ve all had similar experiences,” she said. “We don’t understand how providers are able to do that because that’s not what we take an oath to do, but because there is a lot of homophobia, it is certainly OK in this day to discriminate against LGBT people and have no consequences.”

Moreover, once a provider says “no,” the patients’ journey to access PrEP may well end there.

Michelle Collins Ogle

“It takes a lot of resilience for an individual to hear that from a provider when they are trying to access PrEP and go somewhere else to try again,” Scott said. “It takes a very motivated person with a lot of resiliency and resources to be able to seek out care and be able to talk to multiple providers about getting access to PrEP. What is often happening is that people are asking and being told ‘no,’ and that’s where it stops. They don’t get access to it.”

In a study presented at the 2017 AAP National Conference & Exhibition, Scott and colleagues surveyed 161 medical providers about their attitudes toward prescribing PrEP to youth who are at risk for HIV infection. Results showed that nearly all providers had heard of PrEP, and 95% agreed that the medication prevents HIV. However, only 67% were willing to prescribe it to adolescents.

Ogle argued that providers who are unwilling to prescribe PrEP because they do not agree with their patients’ lifestyle “fight against the very thing they say they want to end.”

“If you want to end the epidemic, those vulnerable subgroups are who we should be making feel the most comfortable and the most welcomed into accessing care,” she explained. “I’m afraid that the messages they are hearing are just the opposite, and we may not get the response that we expect from the groups that are most vulnerable to HIV transmission.”

Increasing PrEP awareness

A survey conducted in 2015 demonstrated that only 16% of adolescent men who have sex with men (MSM; n = 636) were aware of PrEP. More frequent communication about HIV between parents and teens was linked to higher levels of awareness, the researchers wrote.


Keeshin said one intervention that has proven particularly effective at increasing teens’ awareness of the medication in the Salt Lake City area is employing a “PrEP champion” — or someone who has experience with HIV prevention and looks young and demographically similar to the population she is trying to reach.

“Sometimes, I feel like adolescents are a bit afraid to ask a doctor who is at least 10 years older than they are — if not decades older than they are — about PrEP,” Williams-Keeshin said. “But, if they can have a friend or PrEP champion, someone that they trust, that can be helpful.”

Arrington-Sanders said that in Baltimore, the CDC has given funding for “PrEP navigators” who can guide patients through the process of getting tested and accessing PrEP.

An increasingly popular way to reach youth about PrEP is through social media. Researchers recently pilot-tested a social media-based, peer-led intervention called Empowering with PrEP (E-PrEP) to increase PrEP uptake in young black and Latinx, gay, bisexual and other MSM. Ten peer leaders were randomly assigned to recruit and enroll 152 participants from their online networks. The researchers expect that E-PrEP users will be more likely than controls to state their intention to use PrEP. The results of the trial will be published this summer.

Arrington-Sanders said that her institution received an NIH-funded grant through the National Institute of Drug Abuse to develop an app that focuses on peer coaching to improve PrEP uptake and treatment for youth living with HIV. The coaches encourage youth through motivational interviewing to adhere to PrEP or HIV medications, be more aware of their substance use and HIV risk and engage in regular condom use, among other goals.

Ogle said targeted messaging is critical. What works in one community may not work another.

“I think we have to do a better job of tailoring our messages specifically to communities where we think that message will be heard,” Ogle said. “I may need to give one message to a young trans person that lives in rural North Carolina and another to a young trans person in New York, for example. Not all messages are created equal, but I think at least we’re trying to get the message out and trying to let youth know that this medication is for them.”

‘Piece of the puzzle’

PrEP is one important part of the national effort that is underway to end the HIV epidemic in the U.S.

“There are many pieces in this puzzle, but when you put it all together, that’s how we can decrease HIV among this population,” Williams-Keeshin said.


Furthermore, Ogle said adolescents play a central role in achieving the 2030 goal that Trump highlighted in his speech in February.

“If we really want to have a positive impact and decrease new diagnoses, we have to focus all of our efforts and a lot of financial resources and tools into addressing the needs of young people,” she said. “That’s where, in my opinion, we need to focus our efforts if we really want to have an impact.”

Scott said providers can take practical steps toward this goal, like allowing more drop-in hours, flexible scheduling and better communication through texting.

Arrington-Sanders agreed, recommending “thoughtful approaches that are centered in adolescents’ lives” to make PrEP more accessible.

However, in the context of increasing PrEP use among U.S. youth, Arrington-Sanders stressed the importance of also addressing the “upstream effects” that contribute to HIV risk in the first place — lack of housing, unemployment, intimate partner violence, substance use and incarceration, to name just a few.

“We have to get away from thinking that PrEP is a magic pill, and that patients just have to take it every day, when we’re not necessarily addressing all the other factors that contribute to its success or lack of success in staying HIV negative,” she said. – by Katherine Bortz


Disclosures: Arrington-Sanders, Ogle, Scott and Williams-Keeshin report no relevant financial disclosures.