Almost three quarters of adults living in the US report having never tested for HIV according to a newly published study from the Centers for Disease Control and Prevention (CDC). The reasons are complex and could jeopardize goals ending the AIDS epidemic by 2030.
Patients and doctors alike face system challenges, including stigma, confidentiality concerns, racism, and inequitable access. Yet, doctors, public health authorities, and even some patients agree that testing does work: in 2022, 81% of people diagnosed with HIV were linked to care within 30 days. Moreover, many patients are aware of where and how they wish to be tested. So, what would it take to achieve what ostensibly should be the lowest hanging fruit in the HIV care continuum?
“We didn’t look at the reasons for not testing,” Marc Pitasi, MPH, CDC epidemiologist and co-author of the CDC study told Medscape Medical News. But “we found that the majority of people prefer the test in a clinical setting, so that’s a huge important piece of the puzzle,” he said.
The “never tested” populations (4334 of 6072) in Pitasi’s study were predominantly ages 18 to 29 years (79.7%) and 50 years plus (78.1%). A total of 48% of never-tested adults also indicated that they had engaged in past-year risky behaviors (ie, injection drug use, treated for a sexually transmitted disease, exchanged sex/drugs for money, engaged in condomless anal sex, or had > 4 sex partners). However, the difference between never-tested adults who live in Ending the HIV Epidemic in the US (EHE)-designated jurisdictions (comprising 50 areas and 7 US states responsible for > 50% of new HIV infections) and those residing in non-EHE areas was only about 5 percentage points (69.1% vs 74.5%, respectively), underscoring the need for broader engagement.
Dr Lina Rosengren-Hovee
“There’s definitely a lack of testing across the board,” explained Lina Rosengren-Hovee, MD, MPH, MS, an infectious disease epidemiologist at the University of North Carolina School of Medicine in Chapel Hill. “There are all sorts of biases on how we make decisions and how we stratify…and these heuristics that we have in our minds to identify who is at risk and who needs testing,” she said.
“If we just look at the need for HIV testing based on who is at risk, I think that we are always going to fall short.”
Seventeen years have passed since the CDC recommended that HIV testing and screening be offered at least once to all people aged 13 to 64 years in a routine clinical setting, with an opt-out option and without a separate written consent. People at higher risk (sexually active gay, bisexual, and other men who have sex with men) should be rescreened at least annually.
These recommendations were subsequently reinforced by numerous organizations, including the US Preventive Services Task Force (USPSTF) in 2013 and again in 2019, and the American Academy of Pediatrics (AAP) in 2021.
But Rosengren-Hovee said that some clinicians remain unaware of the guidelines; for others, they’re usually not top-of-mind due to conflicting priorities.
This is especially true of pediatricians, who, despite data demonstrating that adolescents account for roughly 21% of new HIV diagnoses, rarely recognize or take advantage of HIV testing opportunities during routine clinical visits.
“Pediatricians want to do the right thing for their patients but at the same time, they want to do the right thing on so many different fronts,” said Sarah Wood, MD, assistant professor at the University of Pennsylvania School of Medicine and attending physician of adolescent medicine at Children’s Hospital of Philadelphia.
Dr Sarah Wood
Wood is co-author of a study published this past February in Implementation Science Communications examining pediatrician perspectives on implementing HIV testing and prevention. Participants identified confidentiality and time constraints as the most important challenges across every step of their workflow, which in turn, influenced perceptions about patients’ perceived risks for acquiring HIV — perceptions that Wood believes can be overcome.
“We need to really push pediatricians (through guideline-making societies like AAP and USPSTF) that screening should be universal and not linked to sexual activity or pinned to behavior, so the offer of testing is a universal opt-out,” she said. Additionally, “we need to make it easier for pediatricians to order the test,” for example, “through an office rapid test…and a re-designed workflow that moves the conversation away from physicians and nurse practitioners to medical assistants.”
Wood also pointed out that any effort would require pediatricians and other types of providers to overcome discomfort around sexual health conversations, noting that while pediatricians are ideally positioned to work with parents to do education around sexual health, training and impetus are needed.
A Fractured System
A fractured, often ill-funded US healthcare system might also be at play according to Scott Harris, MD, MPH, state health officer of the Alabama Department of Public Health and Association of State and Territorial Health Officials’ Infectious Disease Policy Committee chair.
“There’s a general consensus among everyone in public health that [HIV testing] is an important issue that we’re not addressing as well as we’d like to,” he said.
Harris acknowledged that while COVID diverted attention away from HIV, some states have prioritized HIV more than others.
“We don’t have a national public health program; we have a nationwide public health program,” he said. “Everyone’s different and has different responsibilities and authorities…depending on where their funding streams come from.”
Last week, the White House announced that it proposed a measure in its Fiscal Year 2023 budget to increase funding for HIV a further $313 million to accelerate efforts to end HIV by 2030, also adding a mandatory program to increase pre-exposure prophylaxis (PrEP) access. Without congressional approval, the measures are doomed to fail, leaving many states without the proper tools to enhance existing programs, and further painting overworked clinicians into a corner.
For patients, the ramifications are even greater.
“The majority of folks [in the CDC study] that were not tested said that if they were to get tested, they’d prefer to do that within the context of their primary care setting,” said Justin C. Smith, MS, MPH, director of the Campaign to End AIDS, Positive Impact Health Centers, a behavioral scientist at Emory University’s Rollins School of Public Health in Atlanta, and a member of the Presidential Advisory Council on HIV/AIDS.
Justin C. Smith
“When you create a more responsive system that really speaks to the needs that people are expressing, that can provide better outcomes,” Smith said.
“It’s vital that we create healthcare and public health interventions that change the dynamics…and make sure that we’re designing systems with the people that we’re trying to serve at the center.”
Pitasi, Rosengren-Hovee, Wood, Harris, and Smith have disclosed no relevant financial relationships.
Liz Scherer is an independent journalist specializing in infectious and emerging diseases, cannabinoid therapeutics, neurology, oncology, and women’s health.
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