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15% of people living with HIV in U.S. don’t know their status, new study estimates

, by Emily Land

A recent study published in JAIDS by the Centers for Disease Control and Prevention (CDC) estimates the number and percentage of people living with HIV who are undiagnosed by state and nationally.

HIV doctor patient

Although the number and percentage of undiagnosed people living with HIV declined from 2010 to 2014 in the U.S. overall, some regions have made more progress than others. States with the highest number of people living with HIV who were undiagnosed included California, Florida, New York, Texas and Georgia. By region, people in the south accounted for the highest percentage (50%) of people living with HIV who were undiagnosed.

Researchers use mathematical models that apply data on the first CD4 count values after HIV diagnosis to HIV surveillance data to estimate the number of people living with HIV who are undiagnosed. (CD4 counts are one way to measure progression of HIV disease and therefore the length of time before diagnosis.)

Increased HIV testing efforts, called for by the National HIV/AIDS Strategy in 2010, have led to decreases in the number of people with undiagnosed HIV infection. Widespread testing and linkage to HIV care has been a critical focus of the Strategy, helping more people know their status and connecting the newly diagnosed to early HIV treatment. Importantly, increased testing efforts are focused on priority populations that may be at increased risk for HIV including men who have sex with men.

Brittany Maksimovic

Brittany Maksimovic

“We recommend that men who have sex with men, folks who inject, trans individuals, and people who engage in sex work receive routine HIV/STI testing every three months,” said Brittany Maksimovic, manager of testing services at San Francisco AIDS Foundation.

“Testing regularly is an important part of sexual health care for people and their partners. Testing regularly ensures that new infections are caught and treated early, ensuring better health outcomes—and significantly reduces transmission risk.”

Undiagnosed HIV infections

From 2010 to 2014, the estimated number of people with undiagnosed HIV infection in the U.S. decreased from 174,000 to 166,000. The percentage of people living with HIV who were undiagnosed decreased from 17.1% to 15%.

From 2010 to 2014, there were significant reductions in the percentage of undiagnosed people in Georgia and Texas, while in many states the percentage of people with undiagnosed infection remained stable.

  • In California, the percentage of people living with HIV who were undiagnosed went from 16.5% to 15%, a percent change that was not statistically significant.
  • New York’s rate stayed stable at about 12%.
  • States with the highest rate of undiagnosed HIV infection in 2014 included North Dakota (21%), Texas (19.2%) and Louisiana (19.1%).
  • States with the highest number of people living with HIV who were undiagnosed in 2014 included California (21,000), Florida (18,900), New York (17,900), Texas (18,300) and Georgia (9,300).

Barriers to testing

There are many reasons why people at risk for HIV may be undiagnosed. In a study that included more than 1,000 gay and bisexual men in Australia, nearly all (96%) reported encountering at least one barrier to HIV testing. The most common reasons people reported not testing were: annoyance at having to wait for testing results, not having done anything risky, stress in waiting for results, and being afraid of testing positive.

HIV stigma can be a significant barrier to HIV testing.

“I know that many people may be afraid to test—and may avoid it—out of fear of what the outcome might be,” said Terrance Wilder, DREAAM program coordinator at San Francisco AIDS Foundation. “There may be afraid of being judged for their behaviors, and may not have a good understanding of how they will move forward in their lives if they do test positive. So that is one thing that our programs help people understand, and move past, so they can get tested without fear.”

New HIV infections

From 2010 to 2014, the number of new HIV infections across the U.S. decreased from 41,900 to 37,600.

Five states (California, Georgia, Florida, New York and Texas) account for more than half (52%) of all new HIV infections in the U.S.

Get tested for HIV

Maksimovic recommends that people establish a regular testing routine with a provider or clinic they trust. Typically, she explained, HIV test counselors can advise people about how often to test and can help come up with a testing schedule tailored to individual needs.

San Francisco AIDS Foundation offers free, confidential HIV testing at a number of locations in San Francisco. People outside of San Francisco can use the AIDS.gov search tool to find an HIV testing location.

Read more about HIV testing including how often to get tested, things to consider if your test comes back positive or negative, and more.

Sources

Conway, D., and colleagues. Barriers to HIV testing and characteristics associated with never testing among gay and bisexual men attending sexual health clinics in Sydney. J Int AIDS Soc, 2015.

Johnson, A., Song, R. and Hall, H. I. Estimated HIV incidence, prevalence, and undiagnosed infections in US states and Washington, DC, 2010 – 2014. JAIDS, October, 2017.

 

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