For Young People of Color HIV Remains a Significant Concern for Self and Community

Survey Finds Few Know about Advances in HIV Prevention and Treatment;
Stigma and Misperceptions Persist

MENLO PARK, CA – A comprehensive new national survey of young adults, ages 18-30, from the Kaiser Family Foundation finds more than three and half decades into the epidemic, HIV remains an issue of deep concern for young people of color, both for themselves as well as for those they know. Few of those surveyed know about advances in prevention and treatment that experts say could end HIV if more widely adopted.

A majority (53%) of young Black adults say they are personally concerned about HIV, including 44 percent who are “very concerned.” Many Latinos also express worry (35% “very concerned,” 12% “somewhat concerned”). By contrast, 61 percent of their white peers say HIV is “not a concern” for them personally today, and another 20 percent say they are “not too concerned.”

About three times as many Blacks (46%) and Latinos (41%), as whites (15%), say HIV today is a “very serious” concern for people they know. Almost twice as many Black young adults (30%) say they know someone who is living with, or has died of, HIV/AIDS, as compared to whites and Latinos (16% each). One in five (20%) Black young people have a family member or close friend affected by HIV.

A third of Black (34%) and Latino (35%) young people say they worry about getting HIV; 16 percent of whites say they worry about their risk.

“An entire generation has been born and grown up without ever knowing a time when HIV did not exist, and they may be the first to see it end. Whether this future is realized rests with those most affected being educated about – and having access to – the latest advances in prevention and treatment,” said Tina Hoff, Senior Vice President, Health Communications and Media Partnerships, Kaiser Family Foundation.

Many Don’t Know about Advances in Prevention and Treatment

PrEP, the pill to protect against HIV, has been called a potential “game changer” in the fight against HIV; yet, in the five years since it was approved by the Food & Drug Administration (FDA), only 13 percent of young adults know about the prevention option.

Among the relatively few young people who have heard anything about PrEP (27%), only 18 percent believe it to be “very effective.” Many also doubt that all who might want PrEP could get it: 64 percent say “no.” When taken as prescribed, this once daily pill reduces the risk of getting HIV up to 99 percent.

There are also gaps in understanding of how antiretrovirals (ARVs), the medications used to treat HIV, work. While most are generally aware of the health benefits, many understate the effectiveness of modern day treatments. Half of young people do not know being on consistent treatment also prevents the spread of HIV to sexual partners (29 percent say “not too effective,” and 23 percent say “not at all effective”). Just one in ten (11%) say ARVs are “very effective” at preventing the spread of HIV. Studies show that when the viral load is less than 200 copies of virus per milliliter of blood, long-term health is greatly improved and sexual transmission of the virus is extremely unlikely, if not impossible.

Stigma and Misperceptions Persist

Even this many years later, unfounded fears about the risks presented by those with HIV persist. Most young people today say they would be comfortable having people with HIV as friends (65%) or work colleagues (66%) but when it comes to other situations, stigma – and misperceptions – are evident.

Majorities say they would be uncomfortable having a roommate with HIV (51%), or having their food prepared by someone with HIV (58%). Three quarters (73%) respond that are “very uncomfortable” having a sexual partner with HIV, another 18 percent say they would be “somewhat uncomfortable.”

Providing insight into what may be behind the stigma, the survey also revealed a lack of understanding among a significant share about how HIV is transmitted. More than a third incorrectly believe there is a chance HIV could be spread through everyday items, such as plates and glasses (38%) or toilets (38%). Majorities are misinformed in thinking HIV can be transmitted by spitting (54%), or kissing (58%).

HIV Testing

The Centers for Disease Control and Prevention (CDC) recommends HIV testing as part of routine health care, yet more than half (54%) of young adults say they have never been tested. Most who have not say it is because they don’t believe [they are] at risk (67% of those never tested), followed by a doctor never suggested it (41%, multiple responses were possible).

Black young adults are more likely – and more recently – to report having gotten an HIV test. One in three (34%) Black young adults replied they had been tested for HIV within the last 12 months; comparatively, 16 percent of whites and 25 percent of Latinos report having been tested as recently. Overall, 61 percent of Black young adults report ever having been tested for HIV, as compared with 42 percent of whites and 49 percent of Latinos.

Black young adults are also more likely to say a health care provider has suggested HIV testing. One in four (25%) Black respondents report having a health care provider suggest HIV testing within the previous 12 months; only about one in ten whites and Latinos say the topic came up (8% and 14%, respectively). Analysis shows that those who have discussed HIV with a health care provider – and/or have had a health care provider suggest testing – are more likely to report having been tested for HIV.

THE U.S. EPIDEMIC. More than three and a half decades have passed since the first case was diagnosed of what is now known as AIDS. An estimated 1.1 million people in the United States are living with HIV, more than at any time in the history of the epidemic. Due to a combination of social inequities, and where the disease took hold, a disproportionate share of those affected are Black and Latino and/or gay men. In 2015, Black Americans accounted for almost half (45%) of new HIV diagnoses in the U.S., while comprising just 12 percent of the population. Latinos are also heavily affected, accounting for 24 percent persons newly diagnosed with HIV in 2015 and representing 17 percent of the population.

Methodology

The survey was designed and analyzed by researchers at the Kaiser Family Foundation. It was conducted between January 25 – February 16, 2017 among a nationally-representative sample of 1,794 people ages 18-30 years of age. Interviews were administered online and by telephone in English using an instrument developed by staff at the Kaiser Family Foundation. NORC at the University of Chicago conducted sampling, interviewing, and tabulation for the survey using the GenForward panel, a representative panel of adults ages 18-30 living in the United States. Panel members who do not have internet access complete surveys via telephone, and internet users complete surveys via the web (for the current survey, 1,647 participated via the web and 147 via telephone). The margin of sampling error including the design effect for the full sample is plus or minus 3 percentage points; for Black and Latino young adults it is plus or minus 7 percentage points and for whites it is plus or minus 5 percentage points. For sub-groups the sampling error may be higher.

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Filling the need for trusted information on national health issues, the Kaiser Family Foundation is a nonprofit organization based in Menlo Park, California.