Having just commemorated World AIDS Day on December 1, we have been reflecting on the story of our patient Jared*. When we saw him, Jared was a 15-year-old male who visited his primary care provider and other specialists 16 times within three years before he was tested for HIV. He visited providers on multiple occasions with symptoms of sore throat and fever, which are hallmarks of acute or very recent HIV infection. He also complained of abdominal pain, chest pain and headaches, which also could be consistent with HIV. He received extensive examinations for various causes of headaches and vision problems, but providers never considered HIV as a potential diagnosis.

When an astute primary care provider finally did test Jared for HIV, and the result was positive, he was immediately linked to care with our team and quickly started on treatment that resolved all of his symptoms. 

While remarkable, the story of Jared is not uncommon. It is estimated nationally that about 50 percent of youth living with HIV (YLWH) do not know they are infected. Despite the Centers for Disease Control and Prevention (CDC)’s recommendation to routinely test for HIV, rates of testing among adolescents remain low, and missed opportunities for HIV testing and late diagnosis of infection persist. In the U.S. in 2017, only 10.2 percent of all high school students had ever been tested for HIV, and HIV testing prevalence among adolescents did not increase nationally between 2005-2013.

At the Adolescent Initiative program at Children’s Hospital of Philadelphia, we review the charts of all newly diagnosed YLWH referred to our program. On too many occasions, as in the case of Jared, the primary care provider, specialty provider or emergency room had seen the patient in months or years prior to their positive test without testing them for HIV. Some patients were seen for flu-like symptoms possibly related to acute HIV infection and not tested. Some presented for testing and treatment of sexually transmitted infections (STIs) and others for routine physicals and still had not received an HIV test. The majority could have been tested, diagnosed and connected to care earlier—these are missed opportunities.

We knew anecdotally that this was true, but we wanted to formally study how many youth were not being tested for HIV. So, we embarked on a research project—the findings of which recently published in a study called Missed Opportunities for HIV Screening Among a Cohort of Adolescents with Recently Diagnosed HIV Infection in a Large Pediatric Hospital Care Network—to identify factors associated with not being screened for HIV among a subset of recently-diagnosed YLWH. Our findings supported previous studies showing that HIV testing rates remain low among adolescents in the year prior to diagnosis with less than half of the sample tested and only slightly more (59 percent) having any sexual history documented despite clear public health guidelines supporting sexual history taking at adolescent health care visits.

We know that adolescents may not always disclose sexual activity during routine assessment, and we will miss opportunities to test for HIV if we base our decision solely on risk assessment. This may happen because providers have many competing priorities during health care visits and also may not feel comfortable asking questions about sex. Future research is needed to develop interventions in the clinical setting to improve provider comprehensive sexual health and HIV screening practices among adolescents.

Among those seen for any care in our system, in the year prior to diagnosis, we found that they were seen an average of four times without testing. Individuals with symptoms consistent with acute HIV infection were more likely to be tested, but still only 51 percent received the test. Our findings highlight the need to improve HIV testing in accordance with the CDC’s guidelines recommending routine HIV screening for all adolescents.

So, why does testing matter so much? We know that adolescents do not always report their risk, and providers do not always ask. Routine testing is meant to decrease the stigma of HIV, normalize testing in pediatric practice and help to detect and connect to care.

Testing not only helps us identify youth who are positive for HIV, but it can also help us prevent future infections among youth who are negative. Adolescents who get tested and learn they are HIV-negative can learn about how to make decisions that can protect them from HIV, such as taking pre-exposure prophylaxis (PrEP)—one pill by mouth daily, that is as effective as any vaccine in preventing HIV infection.

As we celebrated World AIDS Day earlier this month, we continue to advocate for the adoption and implementation of routine HIV testing guidelines by pediatric providers so that young people like Jared have the opportunity to prevent HIV, know their status and get treatment as quickly as possible when needed. We at the Adolescent Initiative at CHOP are dedicated to moving the needle to make adolescent HIV testing more routine by partnering with pediatricians and using strategies like electronic medical record prompts, provider education about HIV testing and PrEP, and reaching both youth and providers with information about HIV testing and PrEP through our iknowushould2 social media campaign. Ending the HIV epidemic is in our grasp so long as we take the necessary steps to achieve it.

*Name has been changed to protect patient privacy.

Nellie Lazar, MSN, MPH, CRNP-BC, AAHIVS, is an adolescent nurse practitioner with the Adolescent Initiative Program in the Craig-Dalsimer Division of Adolescent Medicine and the Gender and Sexuality Development Clinic at Children's Hospital of Philadelphia.