Above-Normal Death Rate Still Seen in U.S. Youngsters and Young Adults With HIV

February 25, 2016

Despite improved health because of better antiretroviral therapy, HIV-positive teens and young adults in the United States still have a 31 times higher death rate than youngsters the same age in the general population.1 Most deaths resulted from HIV-related conditions, and most deaths involved people with a low CD4 count, a high viral load, or not taking antiretrovirals. Compared with HIV-positive young people studied in 2004-2007, those studied in 2008-2014 had higher rates of broken bones, anxiety, and alcohol or substance abuse.

Wide use of combination antiretroviral therapy starting in the mid-1990s helped everyone with HIV -- including youngsters and young adults -- avoid AIDS diseases and start living longer, healthier lives. But people with HIV still do get AIDS diseases as well as common non-AIDS conditions like high lipids (blood fats), diabetes, kidney disease, and low bone density, which can lead to broken bones.

For many reasons, rates of AIDS and non-AIDS illnesses may differ between young people and older adults. Death rates of HIV-positive people may also differ between youngsters, young adults, and older adults. To get a better understanding of how death rates and rates of AIDS and non-AIDS diseases may be changing in young people in the United States, researchers working with the International Maternal Pediatric Adolescent AIDS Clinical Trials (IMPAACT) network conducted this study.


How the Study Worked

The study group consisted of 1201 U.S. teens and young adults in care for HIV infection. IMPAACT researchers checked medical records of these young people from April 2008 to June 2014 to note important medical events. Those events included illnesses that result in hospital admission, persisting disability, or death -- plus pregnancy, CD4 count, viral load, and antiretroviral therapy.

The researchers compared findings in this study group with findings in a comparison group of HIV-positive young people in care between 2000 and 2007. Two thirds of people in the 2008-2014 study group had been in the 2000-2007 comparison group when they were younger.

The research team focused on new occurrences of AIDS and non-AIDS conditions, pregnancy, and death. They calculated these new-occurrence rates, called incidence rates, for 2008-2014 in the study group and for 2004-2007 in the comparison group. Then they used standard statistical methods to compare incidence rates in the study group and the comparison group. This type of analysis considers the possible impact of age on incidence rates, so age differences between the groups would not affect the comparison.

What the Study Found

The analysis focused on 1201 young people in the 2008-2014 study group and 2358 young people in the 2000-2007 comparison group. The study group averaged 17.4 years in age at their first study visit. Just over half (52%) were female, 58% were black, 28% Hispanic, and 11% white. Most of these young people (87%) got infected with HIV around the time of birth. At the first study visit, these people had a high median (midpoint) CD4 count of 609 and an average viral load below 100 copies. Median CD4 count and viral load stayed around the same levels through 3.7 years of observation. Most study group members (85%) were taking combination antiretroviral therapy. The comparison group averaged 11.9 years in age at their first study visit, and they had a somewhat higher average viral load (about 600 copies) than the study group. Otherwise they were similar to the study group.

The most frequent new medical condition in the study group during the observation period was genital tract infection (almost always a sexually transmitted infection), at a rate of 3.4 per 100 person-years (Figure 1). That rate means about 3 of every 100 young people got a genital tract infection every year. The most frequent genital tract infection was human papillomavirus (HPV), at a rate of 1.9 per 100 person-years (meaning about 2 of every 100 people had a new HPV infection every year). HPV can cause anal cancer, cervical cancer other cancers, and genital warts. Other common new conditions during the study period were pneumonia (1.2 per 100 person-years) and psychiatric disorders (2.8 per 100 person-years), particularly mood disorders (2.2 per 100 person-years).

Rates of New Conditions in HIV+ Young People in 2008-2014

Rates of New Conditions in HIV+ Young People in 2008-2014

Figure 1. In a 2008-2014 study of 1201 HIV-positive young people in the United States, conditions that arose most often were pregnancy, genital tract infections (especially HPV infection), pneumonia, and psychiatric disorders (especially mood disorders). The pregnancy rate of 5.1 per 100 person-years means about 5 of every 100 young women became pregnant every year

Over the 2008-2014 study period, the incidence rate per 100 person-years rose significantly for vitamin D deficiency and bone disorders, a concerning trend in a young population reaching peak bone mass. But incidence of several disorders dropped from 2008 through 2014: asthma, cellulitis (a bacterial skin infection), learning and communication disorders, lipodystrophy (abnormal body fat distribution), and neutropenia (low levels of infection-fighting white cells).

The pregnancy rate also fell significantly from 2008 through 2012. Throughout that period, 97 of 512 young women (19%) in the study group had a first pregnancy, and 24 of those 97 (25%) had one or more additional pregnancies. From 2004 to 2007, 48 of 792 young women in the comparison group (6%) had a first pregnancy. The lower pregnancy rate in the comparison group reflects their younger overall age than the study group .

The study group had higher rates of many illnesses or conditions than the comparison group, even after the researchers accounted for the younger age of the comparison group (Figure 2). Several of the conditions that occurred more often in the study group were mental or behavioral problems, including anxiety disorders, stress-related disorders, impulse-control disorders, mood disorders, learning and communication disorders, and substance abuse or alcohol abuse. Compared with the comparison group in 2004-2007, in 2008-2014 the study group had higher rates of vitamin D deficiency, bone disorders, and fractures (broken bones). Other important illnesses or conditions that arose more often in the study group than in the comparison group were genital or anal herpes, HPV infection, abnormal lipids, high blood pressure, iron-deficiency anemia, latent tuberculosis, atypical mycobacterial infection, appendicitis, gastroesophageal reflux, and eczema. Only one disease -- pneumonia -- occurred less often in the study group than in the comparison group.

Disorders More Common in 2008-2014 Than in 2004-2007 Among Young People With HIV

Disorders More Common in 2008-2014 Than in 2004-2007 Among Young People With HIV

Figure 2. Besides the conditions shown here, other medical problems seen more often in young HIV-positive people studied in 2008-2014 than in young people with HIV seen in 2004-2007 in the United States were herpes, high blood pressure, latent tuberculosis, mycobacterial infection, appendicitis, gastroesophageal reflux, and eczema. Mental and mood disorders included anxiety, stress-related disorders, and impulse-control disorders.

From 2010 through 2014, 28 people in the study group died. The death rate (0.66 per 100 person-years) was similar to the death rate from 2004 through 2006 in the comparison group (0.63 per 100 person-years). Those death rates mean about 6 of every 1000 people died every year. Among the 28 deaths in the study group, an HIV-related disease caused 24 deaths (86%). The death rate of 0.66 per 100 person-years is 31.5 times higher than the death rate in the general U.S. population for this age group.

What the Results Mean for You

This large multiyear comparison of two groups of HIV-positive U.S. teenagers and young adults shows much room for improvement in the health of these young people. The overall death rate in the 2010-2014 study group (0.66 per 100 person-years) hardly differed from the death rate in the 2004-2006 comparison group. And by far most deaths (86%) were related to HIV infection. The death rate in the study group was more than 30 times the death rate of young people in the general U.S. population. Those findings indicate that the health improvements made possible with the latest antiretroviral therapies still leave many young people vulnerable to HIV-related illnesses.

One reason for this failure is that some HIV-positive young people do not take their antiretrovirals regularly -- or do not take them at all. Young people in the study group who died had lower CD4 counts and higher viral loads, and they were less likely to be receiving antiretroviral therapy, than people who did not die. Although this study did not directly measure how faithfully young people took their antiretrovirals, these findings indicate that inconsistent pill taking or treatment interruptions contributed to deaths in the study group. Taking antiretrovirals on time every day is the most important thing anyone with HIV can do to make sure they control their infection. If you have trouble taking your antiretroviral pills every day, talk to your HIV provider about that problem. Your HIV provider can suggest methods to help you remember to take your pills. Sometimes your provider can switch you to another antiretroviral combination that's easier to take.

This study also made important findings about how often medical conditions arise in young people with HIV infection. Sexually transmitted genital tract infections were among the most common new conditions detected in this study group. The most frequent genital tract infection was HPV infection, which can cause anal, penile, or cervical cancer. Other common sexually transmitted infections were chlamydia, herpes, candidiasis, syphilis, gonorrhea, and trichomoniasis. United States health authorities recommend the HPV vaccine starting at age 11 or 12 for all girls and boys.2 These vaccines can prevent infection with the most common and dangerous types of HPV. (See "Few Young Gay/Bisexual Men in U.S. Getting Important Vaccine Against HPV" in this issue of HIV Treatment Alerts.)

Wearing condoms is an efficient way to prevent passing HIV and other sexually transmitted infections to a sex partner. Condoms also protect HIV-positive people from picking up other sexually transmitted infections. Often sexually transmitted infections cause no symptoms. So the only way to know if you have such an infection is to get tested regularly. If you are sexually active, talk to your HIV provider about how often you should get tested for sexually transmitted infections.

Mental problems and mood disorders, as well as drinking too much alcohol and using party drugs, proved particularly frequent in these young people. Mental and mood problems include depression, anxiety, and learning and communication disorders. The 2008-2014 study group had higher rates of many such problems than the 2000-2007 comparison group of young people. Everyone with HIV should understand that problems like depression and anxiety are medical conditions that your HIV provider can diagnose and treat. Just as you would talk to your provider about a medical condition like an ongoing cough, talk about problems like depression and anxiety if they interfere with your day-to-day living.

During the 2008-2014 study period, the rate of low vitamin D and bone problems rose in this group of young people with HIV. Vitamin D is essential for healthy bones. Compared with the 2000-2007 comparison group, the 2008-2014 study group had higher rates of low vitamin D, bone disorders, and broken bones. People the age of those in the study group are reaching their peak bone mass, the point at which bones reach their greatest density and strength. Achieving high peak bone mass is critical for people with HIV, who tend to have higher rates of bone thinning and fractures than HIV-negative people as they age.

Getting enough vitamin D in the diet and by healthy sun exposure, and getting enough calcium in the diet are important ways to achieve and maintain good bone health. Getting enough exercise, not smoking, and not drinking too much alcohol are also essential to good bone health. A few antiretroviral drugs may contribute to bone thinning. Newer drugs that can replace these older antiretrovirals are becoming available.

In this study group, pregnancy rates were lower than the U.S. population in women older than 20, similar to the U.S. population in those 15 to 19, and higher in those under 15 years old. HIV-positive women face an added responsibility when they become pregnant: To avoid passing HIV to the fetus or the newborn, they must take antiretroviral therapy and reach an undetectable viral load. If you do not want to become pregnant, talk to your HIV provider or a family planning professional to pick the type of contraception that suits you best. Condoms used correctly and consistently also prevent pregnancy.


  1. Gayatri M, Williams PL, Chernoff M, et al. Changing trends in complications and mortality rates among U.S. youth and young adults with HIV infection in the era of combination antiretroviral therapy. Clin Infect Dis. 2015;61:1850-1861.
  2. Centers for Disease Control and Prevention. Human papillomavirus (HPV). Questions and answers. 2015.

This article was provided by The Center for AIDS Information & Advocacy. It is a part of the publication HIV Treatment ALERTS!. Visit CFA's website to find out more about their activities and publications.

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