Lack of testing teenage boys most at risk for developing HIV feeds the growing epidemic in the US


The majority of teenage boys most at risk for developing HIV are not being tested for the disease, reports a new Northwestern Medicine study.


  • More than one million people are living with HIV in the United States of America (USA); one in seven are unaware of their status.
  • The HIV epidemic is driven by sexual contact and is concentrated among certain key populations, in particular gay men and other men who have sex with men.
  • African Americans are worse affected by HIV across all key population groups.
  • Despite condoms being widely available, use is falling, even among people who are at heightened risk of acquiring HIV.
  • The USA is experiencing a public health emergency in the form of an opioid epidemic which is threatening the gains made on reducing HIV among people who use drugs.
  • Stigma remains a huge barrier to preventing HIV, and is linked to low testing rates, as well as poor adherence to treatment, particularly among young people.

This lack of testing feeds the growing epidemic of undiagnosed HIV infections in the United States.

An estimated 14.5% of HIV infections in the U.S. are undiagnosed, but among 13- to 24-year-olds, the undiagnosed rate is more than 3.5 times greater (51.4%).

Men who have sex with men (MSM)

Men who have sex with men (sometimes referred to as MSM) are the group most affected by HIV in the USA, accounting for an estimated 2% of the population, but 66% of new annual HIV infections.13 

At the end of 2015, the most recent data available, around 632,300 USA-based men who have sex with men were living with HIV. One in six of these people were unaware they were HIV positive.14

Between 2010 and 2016, new HIV infections among men who have sex with men remained stable at about 26,000 a year.15 

However, trends vary greatly by age and ethnicity. For example, new infections among African American/black men who have sex with men remained stable overall, at about 10,000 new infections (around 38% of all new infections among men who have sex with men, which in itself is greatly disproportionate) but they increased by 65% among those aged 25 to 34 (from 2,600 to 4,300).

Among Latino and Hispanic men who have sex with men, new infections rose by around 30%, from 6,400 to 8,300. Again, the greatest rise was among 25 to 34-year-olds, where new infections increased by 68%.

Among white men who have sex with men, new infections decreased to less than a-fifth overall, from 8,000 to 6,700.16

In 2016, it was estimated that, if current diagnosis rates continued, one in six American men who have sex with men would be diagnosed with HIV in their lifetime. This equates to one in two African American/black men who have sex with men, one in four Hispanic/Latino men who have sex with men and one in 11 white men who have sex with men.17

Every three years, the US Centers for Disease Control and Prevention (CDC) studies sexual risk behaviours among men who have sex with men in selected cities.

The latest data from this survey suggests the number of men who have sex with men having anal sex without a condom is increasing. In 2008, 13.7% reported having condomless sex, rising to 15.7% in 2014.18

In 2017, 24% of HIV-positive and 21% of HIV-negative men who have sex with men whose last sexual partner was male reported having condomless anal sex in the three months before the interview.19

The study found:

This group of boys is disproportionately at risk to acquire HIV but faces many structural barriers that hinder testing, such as simply not knowing they can legally consent to getting an HIV test, where to get tested and fears of being outed.

This is true even for those who want to check their status, the study found. This new study identified factors that increase the likelihood of testing, including parents talking about sex and HIV prevention, knowing basic facts about HIV, and feeling that testing is important and they are empowered to do it.

When all these factors were considered together, the most important factors were having had conversations with their doctors about HIV, same-sex behavior and sexual orientation.

“Doctors – pediatricians in particular – need to be having more frank and open conversations with their male teenage patients, including a detailed sexual history and a discussion about sexual orientation – ideally a private conversation without parents present,” said first and senior author Brian Mustanski, director of the Institute for Sexual and Gender Minority Health and Wellbeing (ISGMH) at Northwestern University Feinberg School of Medicine.

“If parents ask their teen’s provider to talk about sexual health and testing, this may be enough to start that key dialogue in the exam room, leading to an HIV test.”

The findings will be published February 11 in the journal Pediatrics.

This news comes in the wake of President Donald Trump’s announcement of the 2019 federal “Ending the HIV epidemic” initiative.

One of the four pillars of the initiative is diagnosing individuals with HIV early after infection. But in order to diagnose patients, individuals must be tested for HIV, Mustanksi said.

The following simple changes within the pediatric practice can facilitate important discussions that could improve testing among gay, bisexual and questioning teenagers, Mustanski said:

  • Pediatricians can update their intake forms to include a section on sexual orientation
  • By hanging visual cues like Safe Zone or LGBTQ ally posters in exam rooms, they can signal safety and acceptance to adolescents
  • Doctors can articulate to patients that their office is a safe-space to discuss sexuality
  • They can reinforce doctor-patient confidentiality, which can be accomplished by asking patients’ parents to exit the room during part of the patient-history

For pediatricians who do not want to engage in conversations about sexual orientation, defaulting to HIV testing with informed “opt-out” can be effective, too.

Teens also can opt to get testing in many community organizations that offer HIV testing. A map of these clinics can be found at

These programs are equipped to help counsel people on how to reduce their future risk for HIV and how to access health care services if they test positive.

“To promote these options, we need health education programs that teach teens about their legal rights to testing, the importance of testing and how to go about it,” said co-author Kathryn Macapagal, research assistant professor of medical social sciences and psychiatry and behavioral sciences at Feinberg.

“Our team developed a program that addresses these needs for teens, and we expect the results of our nationwide trial to come out soon.”

As part of a larger randomized control trial, the study asked 699 gay, bisexual and questioning male teenagers (ages 13-18) about their lifetime receipt of an HIV test, demographics, sexual behaviors and condom use, experience of HIV education from schools and family, sexual health communication with doctors, HIV knowledge, and prevention/risk attitudes.

The global community has committed to ending AIDS as a public health threat by 2030. This means the number of new HIV infections and AIDS-related deaths must decrease by 90 per cent between 2010 and 2030 [1].

However, this goal will not be achieved unless greater attention is dedicated to preventing HIV infection among adolescents and young people. In 2017, an estimated 3.9 million [2.1–5.7 million] adolescents and young people aged 15–24 were living with HIV.

About 61 per cent of adolescents and young people living with HIV are adolescent girls and young women (AGYW), and about 78 per cent live in sub-Saharan Africa.

While new HIV infections decreased by 20 per cent among adolescents and young people between 2010 and 2017, today they account for 36 per cent of new HIV infections among adults aged 15 and above.

About 1,600 adolescents and young people become infected with HIV every day [2].

To end AIDS by 2030, the United Nations Joint Programme on HIV/AIDS (UNAIDS) developed the Fast-Track agenda.

Under this agenda, the 95 – 95 – 95 goals for 2030 specify that 95 per cent of people living with HIV should know their HIV status, 95 per cent of those who know their status should be on antiretroviral treatment, and 95 per cent of those on treatment should be virally suppressed and sustained.

The strategy also calls for a reduction of the current 1.6 million [1.3–2.1 million] annual number of new HIV infections among adults to 200,000 new HIV infections among adults by 2030 [1,2].

The Super – Fast Track agenda was set for 2020 to accelerate progress towards these 2030 goals for child, adolescent and young populations. Specifically, it calls for a reduction in the annual number of new HIV infections among adolescent girls and young women to 100,000 in 2020 [3].

However, in 2017 alone there were 340,000 [200,000–490,000] new HIV infections among adolescent girls and young women [2].

This means that new HIV infections among this population have been decreasing at an average annual rate of 3 per cent between 2010 and 2017, while a 13 per cent average annual rate of decrease has been required to achieve less than 100,000 new infections by 2020.

It is clear from current estimates that the HIV response is off track for this 2020 goal.

HIV prevention has been particularly challenging in this population due to issues with social norms, social vulnerability, high-risk sexual behaviour, policy barriers, poor care-seeking behaviours and access to services [47].

HIV testing coverage remains low in this age group for these same reasons. In South Africa, the country with the highest burden of HIV in the world, only 38 per cent of adolescent girls and 29 per cent of adolescent boys in the general population report testing for HIV in the last 12 months and receiving the results of the test [8].

Even among those living with HIV in the United States, only an estimated 41 per cent of HIV-positive young people aged 13–29 know their HIV status [9].

Adolescents and young people living with HIV also exhibit low adherence to antiretroviral therapy (ART).

For example, a meta-analysis from 53 countries found that 62 [57–68] per cent of adolescents and young people living with HIV aged 12–24 adhered to therapy [10].

This is of concern because 90 – 90 – 90 goals for 2020 call for 73 per cent prevalence viral load suppression among people living with HIV, which cannot be achieved without adequate adherence to ART.

The Namibia Population-based HIV Impact Assessment (PHIA) found that 82 per cent and 70 per cent of adult women and men living with HIV, respectively, were virally suppressed, but only 65 per cent of adolescent girls and young women and 61 per cent of adolescent boys and young men were virally suppressed [11].

Evidence shows that the HIV response is off-track for global targets among adolescents and young people.

To address this problem, more evidence is needed to monitor progress towards global HIV goals, understand barriers in HIV prevention, care and treatment, and improve interventions for this age group.

Demographic shifts could impact the HIV response and pose an additional complication in preventing HIV infection and improving treatment among adolescents and young people in countries experiencing population growth in this age group.

Age structures have changed over time and are projected to continue changing as countries undergo demographic transition.

The recent 2017 Revision of World Population Prospects shows that while fertility rates are on the decline globally, some parts of the world are still projected to face population growth in adolescent and youth age groups between now and 2050 [12].

This projected growth is largest in the region most affected by HIV: sub – Saharan Africa. Population change may also affect the absolute number of new HIV infections and total number of people living with HIV in parts of the world where HIV incidence has increased or remained the same since 2010, namely Latin America and the Caribbean, East Asia and the Pacific and Eastern Europe and Central Asia.

By 2050, the population aged 15–24 is expected to increase by 10 per cent globally. This is mostly driven by sub-Saharan Africa, where the population aged 15–24 is projected to more than double [12].

Sub – Saharan Africa is also home to 72 per cent of new HIV infections among adolescents and young people, and the number of new HIV infections among adolescents and young people in the region has only decreased by 22 per cent since 2010.

The combination of a growing population of young people, high fertility rates and persistent HIV incidence could impact the rate of reduction of new HIV infections in various geographies.

This paper uses an HIV epidemic model to assess the influence of HIV programme response and demographic factors such as trends in population size of adolescents and youth, fertility rate, and HIV incidence on the future of the HIV epidemic for adolescents and young people from 2010 to 2050.

The ultimate objective of this analysis is to evaluate whether the HIV response is on track for global goals to end AIDS among adolescents and young people by 2030.

Journal information:Pediatrics


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