Testing for HIV is fast, confidential and freely available in many areas across the U.S. Yet an estimated 15% of people living with HIV—about 162,500 people—are living with HIV but have not received an HIV diagnosis. The CDC estimates that more than half of American adults have never been tested for HIV. What keeps people from finding out they are living with HIV, and what can we do to improve HIV testing rates everywhere?
Research by Ananda Ganguly and Joshua Tasoff from Claremont McKenna College sheds light on one reason why people living with HIV may not get tested: some people may not want to know if they’re living with HIV, and may go out of their way to avoid getting tested. Their research points to the importance of reducing fear and anxiety around HIV as a way to improve HIV testing rates.
Although there are many reasons why people may not want or may not be able to get tested for HIV, Ganguly and Tasoff’s research explores “the ostrich effect,” a behavior where people knowingly avoid potentially negative information named for the false tale that ostriches bury their heads in the ground to avoid danger. People may resist receiving unpleasant information about their health—even when knowing the health information would be useful. Ganguly and Tasoff found that college student volunteers were willing to pay money not to receive results from an HSV (herpes) infection test.
“It’s like an ignorance-is-bliss result,” said Tasoff in a Hidden Brain podcast about the study.
In the study, student participants sat through an informational webinar about HSV-1 (which is typically associated with cold sores) and HSV-2 (which is typically associated with genital herpes), that included clinical pictures of herpes sores and rates of infection among college students.
The participants had their blood drawn, and were told that they could have their blood tested for free for both kinds of herpes. Study participants were assured confidentiality, and procedures were put in place so that even clinical staff for the study would not know the test results associated with individual participants.
To test for “information avoidance,” the researchers told study participants that they could pay $10 to not have their blood tested. A share of participants (5.2%) chose to pay to avoid an HSV-1 test. Moreover, a greater share of participants (15.6%) paid to avoid receiving an HSV-2 test. HSV-2 was judged to be “worse” or more stigmatizing than HSV-1 by participants.
“The avoidance is particularly conspicuous when we consider that the fee for an HSV test at the university’s student health center is $40,” the researchers said. “[Participants] are offered a test of potential high usefulness that would otherwise cost them $40… and yet still refuse to accept the test.”
Among people who chose not to have their blood tested, most (64.7%) said that they declined testing because the result might cause stress or anxiety.
There are certainly many reasons why some people living with HIV may not be aware of their infection. In some areas, easy and convenient HIV testing services may not be readily available. In surveys, people say that annoyance at having to wait for test results and the belief that they’re not at risk for HIV keep them from accessing regular testing. Fear and misconceptions also play a role.
“I have delayed getting tested out of fear,” said David, a San Francisco Bay Area resident. “The fear of getting a positive result still creeps into my head every time I test. Even with PrEP, and safer sex practices.”
Jimmy Gale, manager of HIV-positive services at San Francisco AIDS Foundation recalls the anxiety of testing for HIV, in addition to the fear of being judged by medical providers. “It’s even more terrifying if you don’t feel comfortable talking to your doctor about your risk factors or sexual behavior,” he said. “While many healthcare agencies have gone out of their way to be more open and inclusive to LGBTQ patients, some providers still feel uncomfortable if a patient shares intimate details of their sex lives.”
Brittany Maksimovic, manager of testing services at San Francisco AIDS Foundation recommends that people establish a regular HIV testing routine with a provider or clinic they trust as a way to reduce fear and anxiety about HIV testing.
“Testing doesn’t have to be scary, and any good sexual health screening program will endeavor to make you feel heard and supported,” said Maksimovic. “If you experience anxiety around HIV testing, you aren’t alone—many of our clients report feeling similarly. Because we know it can be nerve-wracking (having been there ourselves!) my team goes out of our way to make sure that your sexual health screening feels comfortable and safe. And, if you do test positive for HIV, we will connect you to care so that you can live healthy and well. Knowledge is power, especially when it comes to your sexual health.”
“It’s important to test often. It will reduce your own anxiety and the more frequently you test, the easier it is to notify partners if you test positive for an STI. There are services available to help with partner notification, many of them can be done anonymously,” said Gale.