In many ways, HIV testing should be the cornerstone of all efforts to help end the epidemic in the United States. It is the first step in getting people diagnosed and then linked to care, and it provides an important opportunity to discuss prevention options with people at risk for HIV.1 Unfortunately, we know that from 2016 to 2017, less than 40% of people in the US had ever been tested for HIV and, in 2019, an estimated 1 in 8 people living with HIV in the US was unaware of their status.2,3
Everyone knowing their status is an important part of helping end the HIV epidemic. It allows people to move forward and talk to a healthcare provider about next steps.
The Centers for Disease Control and Prevention (CDC) recommends that everyone ages 13 to 64 get tested for HIV at least once in their lifetime, and that people at increased risk for HIV get tested more often—each year or even more frequently (every 3 to 6 months, for example)—depending on their relationships and behavior.1 Among other criteria, regular HIV testing is recommended for:
It is also important that pregnant women talk to their healthcare provider about getting tested for HIV. Testing as soon as possible in pregnancy can help expectant mothers who are HIV positive receive the care they need to prevent mother-to-child transmission of HIV.1
Data suggest, however, that many people are not following these HIV testing guidelines.
In 2018, only 30% of young people aged 18 to 24 in the US reported having ever been tested for HIV compared to 55% of those aged 25 to 34, 59% of those aged 35 to 44, 49% of those aged 45 to 54, 35% of those aged 55 to 64, and 17% of those aged 65 and older.7 The CDC analyzed data from the General Social Survey between 2006 and 2016 and found that 38% of men and 41% of women in the US had ever been tested for HIV.6 The analysis revealed more information about who gets tested and how often:
In the early days of HIV, there were few treatment options, and a positive test result was seen as a death sentence. Things have changed dramatically since then, and with the proper care, people can live with HIV for many years.9,10 In order to receive such care, however, people must first get tested for HIV.1 Research has shown that fear and stigma as well as perceived cost and perceived lack of risk prevent many people from seeking the HIV testing they need.11
One study published in 2019 asked men and women aged 19 to 64 living in the Southern US why they hadn’t been tested for HIV and had them rank possible reasons. Concerns about cost and insurance reimbursements were ranked highest followed by not knowing where to receive HIV care and not feeling at risk for HIV. Fear of the testing procedure and the results were also on the list. Some of the other barriers identified in the study highlight the stigma that still surrounds both HIV and HIV testing. Participants feared that HIV testing reflected poorly on them as a person, that they’d be judged by their healthcare provider, and that other people would find out about the test.11
A 2017 survey of young people aged 18 to 30 in the US found similar results. Of those surveyed, more than half (54%) had never been tested for HIV. When asked why, 67% of those not tested said they didn’t think they were at risk for HIV, and 41% said a doctor had never suggested HIV testing. Other reasons for not getting tested included feeling embarrassed, not knowing where to go, cost or privacy concerns, and fear of the test results.12
A separate US survey from 2014 to 2015 of people over the age of 18 found that many (65%) would like their physician to recommend HIV testing, and 85% said they would be “likely or very likely” to accept an HIV test if their physician offered it.13
Only 30% of young people IN THE US aged 18 to 24 in 2018 reported having ever been TESTED FOR HIV.
Though the perceived cost of HIV tests is often cited as a barrier, most people should be able to get tested for little or no cost.11 The Affordable Care Act requires insurance companies to cover HIV testing with no co-pay, and both Medicaid and Medicare cover some HIV testing. In addition, many community-based organizations and health departments will offer HIV testing for free or at very low cost to people who do not have insurance.1,14,15 The CDC also covers the cost of an at-home HIV testing kit.16
Since 2006, the CDC has recommended that providers in all types of healthcare settings, including primary care settings, obstetric offices, public health and community-based clinics, hospitals, urgent care clinics, and emergency departments, offer HIV testing to all patients as part of standard care.17 Under this kind of a policy, patients are told—verbally or through the forms or brochures they receive—that they will be given an HIV test unless they tell their healthcare provider they do not want to be tested. They do not need to give specific consent for the HIV test as it is considered part of the routine preventive care they are consenting to during the visit.18 This is referred to as an “opt-out” policy.17
In contrast, an “opt-in” policy asks patients deemed to be at risk if they’d like to be tested for HIV. The CDC believes that opt-in policies miss many people whose risk factors for HIV may be less obvious, such as heterosexual men and women who are unaware of their HIV risk, and those who live in non-urban, low-prevalence settings.18 Research has also found that people may underestimate their own risk for HIV, and that fear of stigma and discrimination prevents many people from getting tested when given the option.19
By testing everyone, opt-out policies can also remove some of the stigma associated with HIV testing and can help lead to earlier diagnoses and treatment.18 Data from 2011 to 2013 from one study showed that opt-out policies lead to higher rates of HIV testing than other policies.20
Today, people can find HIV testing across different settings. Many healthcare providers offer testing in their offices. Clinics, health departments, community-based health centers, and hospitals also offer HIV testing. HIV self-tests are also available at pharmacies and online, and some health departments and other organizations will send rapid self-tests to people’s homes at low or no cost.15
Information about where to get tested can be found here:
HIV testing can be done with a saliva sample, a finger prick of blood, or a blood draw from a vein. Some HIV testing can also be done with a urine sample. Different types of HIV tests rely on different samples, and results take anywhere from 20 minutes to several days. In addition, some tests can detect HIV infection sooner after exposure than others; the time between exposure and being able to detect infection through a test is often called the “window period.”21
The type of HIV test a person gets is largely dependent on where they get tested, but understanding the differences may be helpful.