PolicyLab

Editor’s Note: This post is part of a series taking a family lens to substance use and substance use disorder through solutions that can support children, teens and caregivers. Through harm reduction measures, public policies, and connections between health care systems and community-based services, the authors offer tangible opportunities to address the substance use crisis affecting families in our community and across the country. PolicyLab developed the series in partnership with Children’s Hospital of Philadelphia’s Comprehensive Opioid Response and Education (CORE) Program.

When I (Tina) met my first patient (they/them) with a history of fentanyl injection, I needed to ensure they and their mother understood the risks of injection drug use. 

In addition to equipping this youth with knowledge about medications for opioid use disorder (MOUD) and overdose reversal agents, such as Narcan, which could save their life from a lethal overdose, we needed to talk about the infection risks incurred by their injection drug use. 

My patient was unaware that HIV could be contracted from needle sharing and did not realize this infection spread through ways other than sexual contact. 

This encounter stays with me as our city faces an ongoing HIV outbreak among people who inject drugs. 

HIV risk also increases greatly among adolescents and young adults who use alcohol or other substances before or during sex. Non-injection drug use, such as heavy drinking or cannabis use, can lead to sex with an increased number of partners or sex without condoms, also increasing their risk of HIV infection.

The medical system clearly needs to do more to support young people who use drugs in understanding risk and harm reduction strategies. There is also an important and necessary role for other systems that serve youth. All of these systems should be working together to educate young people and promote harm reduction strategies. 

A solution exists, but it’s not reaching youth at risk 

According to 2021 data from the Philadelphia Department of Public Health, teens and young adults ages 13-24 accounted for 23% of cases of the 365 people newly diagnosed with HIV in Philadelphia. And data from the Centers for Disease Control and Prevention (CDC) show that among people who inject drugs, nearly 50% of youth ages 18-24 share needles, which is more than any other age group and contributes to their HIV risk. 

These co-occurring epidemics of HIV and substance use continue to impact youth in preventable ways. We can prevent the transmission of HIV with pre-exposure prophylaxis (PrEP), which if taken consistently, is 99% effective at preventing HIV transmission.

However, young people who inject drugs are prescribed PrEP at lower rates than other priority groups for HIV prevention, including men who have sex with men. 

Our recent research in Philadelphia found that only 1 in 50 Medicaid-enrolled adolescents and young adults receiving MOUD who qualified for PrEP were prescribed PrEP during the study period. Additionally, only 1 in 25 Medicaid-enrolled adolescents and young adults receiving MOUD were screened for HIV in a timely fashion.

We identified many reasons for this inadequate PrEP coverage among youth. Through qualitative interviews with health care providers, we uncovered an array of factors at the patient, provider, and health system levels that influenced discussions about HIV prevention and PrEP prescriptions. 

• Providers shared that stigma around PrEP use, concerns about adherence to medications and the need for bloodwork monitoring are all factors impacting patients. 
• Barriers such as discrimination within clinic settings, low HIV-related health literacy, and confidentiality prevent adolescents and young adults from disclosing behaviors related to substance use and HIV for fear of judgement or even legal consequences. 
• Providers also emphasized that their patients frequently come to well visits with significant competing social or mental health care needs, such as housing instability or untreated mental illness, which get prioritized in the visit, often at the cost of other preventive health services.
• We also saw what is referred to as the “purview paradox,” wherein HIV and infectious disease specialists who are the best trained and most willing to prescribe PrEP often do not see patients who are HIV negative. At the same time, primary care and addiction medicine physicians, who regularly care for patients who are HIV negative, are often not trained or equipped to provide PrEP. 

Opportunities to Provide More Comprehensive Care

In alignment with the recommendations set forth by the United States Preventive Services Task Force, the CDC, the American Academy of Pediatrics, and the Society for Adolescent Health and Medicine, there is a clear need to consistently offer HIV testing and PrEP in ways adolescent patients will find acceptable. 

If we hope to curtail the HIV epidemic, researchers and providers need to improve how we identify youth who use drugs and engage them in HIV prevention care, including counseling, PrEP, and HIV and STI testing. 

The sexual health of young people who use drugs is often overlooked by the traditionally segregated systems of care for HIV treatment, HIV prevention and substance use disorder (SUD) treatment. To broaden access to HIV prevention care, we must confront these barriers to integrated care head on and reimagine how we deliver services to facilitate comprehensive sexual health care for these young people.

Educating youth in clinical and school settings about the ways substance use can impair decision-making and increase their risk of HIV is another opportunity for prevention and intervention. Partnership and collaboration with student health services and health education in schools is important in achieving this. Another important strategy to consider is meaningful engagement with both certified recovery specialists and certified family recovery specialists in these settings.

But to reap the full benefit of PrEP for youth, we need youth-informed research to determine the best strategies for HIV testing, PrEP counseling and linkage to care.

Targeted Solutions to Meet Youth’s Unique Needs

This motivates the rational for my (Tina) next set of studies, focusing on PrEP awareness, attitudes and knowledge among young people with SUD who visit a doctor for care. Our next goal is to develop an intervention that will help health systems improve communication between patients and their providers with a decision aid outlining the options, risks, and benefits of PrEP to support uptake in a way that honors patient preferences and values. 

Delivering PrEP to adolescents and young adults who use drugs will require targeted interventions that meet their unique needs. Ultimately, research, policy, and clinical care should work together to empower young people with the knowledge and medical options to protect themselves and be their healthiest selves. As medical providers for young people, it is our responsibility to create health care systems and programs that meet their unique needs with compassionate and comprehensive—not fragmented—care.