One Third of U.S. Youth Are Slow to Start Antiretrovirals, and Many Quit or Switch
Nearly one third of HIV-positive 12- to 24-year-olds
in a large US study did not start antiretroviral therapy
even though treatment guidelines said they should.1
More than half of those who started antiretrovirals
stopped or had to switch drugs, usually within a year of
starting. Factors that affected late starting or early stopping
included poor appointment keeping, a CD4 count
under 200, and treatment at an adult clinic.
The rate of new infections in adolescents and young
adults is rising in the United States. Young people from
15 to 24 make up the fastest-growing HIV-positive
group in the United States2,3 and many other countries.
Youngsters have low HIV testing rates.4 And when they
test positive, they are often slow to enter care, start antiretroviral
therapy, and stay on antiretroviral therapy.4
Many obstacles prevent young people from getting tested
and treated, including fear of others knowing they
have HIV and fear of discrimination and harassment
because they have HIV. But rates of delayed treatment
and early dropout remain poorly understood, as do
the precise reasons for these problems. To learn more
about these issues, HIV Research Network investigators
planned this study of young people infected because
of risky behavior, mainly unsafe sex.
- How the study worked. The study involved 12- to
24-year-olds infected with HIV through risky behavior
and seen in a pediatric or adult clinic in the HIV
Research Network. (Pediatric clincis focus on care of
children and adolescents with HIV.) Everyone became
infected in or after 2002. Researchers tracked important
aspects of HIV care in these adolescents and young
adults through 2008. Everyone had at least two CD4
counts below 350, which meant they should start antiretroviral
therapy according to treatment guideliens
of that period. (US guidelines now say adolescents
and adults should start antiretrovirals when their CD4
count falls under 500.)
The researchers considered only years in which individuals
were in care, which meant having at least one
HIV clinic visit and one CD4 count. The HIV Research
Network team determined how many people started
antiretroviral therapy, how much time passed between
having a second CD4 count under 350 and starting
antiretrovirals, how many people stopped or changed
their antiretroviral therapy, and how much time passed
between starting and stopping or changing.
Finally, the researchers used standard statistical methods
to identify factors that raised the risk of not starting
therapy or the risk of stopping or switching therapy.
- What the study found. The study included 287 young
people, with a median age of 21 years. Almost three
quarters of the study group (72%) were male, 68% were
black, 17% Hispanic, and 12.5% white. More than half
(58%) became infected during gay sex, while 39% became
infected heterosexually. Fewer than 2% became
infected while injecting illegal drugs.
About three quarters of the study group (73%) had a
CD4 count between 200 and 350 when they entered
the study, while the other 27% had an initial CD4 count
below 200. Most study participants (62%) made more
than four visits to their HIV doctor during the study period. While 78% went to an adult clinic, 22% went to
a pediatric clinic. None of these people had taken antiretrovirals
before the study began.
During the study period, 198 of these young people
(69%) started antiretroviral therapy, even though US
guidelines said all of them should have begun treatment,
because everyone had a CD4 count under 350.
Median time to starting antiretrovirals was 198 days,
or about 6 and a half months. Median time to starting
was faster in youngsters with a CD4 count under 200
(56 days, or about 2 months) than in those with a CD4
count of 200 to 350 (336 days, or almost a year). Young
people who had more than 4 HIV clinic visits in the
year after having a CD4 count under 350 started antiretrovirals
in a median of 156 days (about 5 months),
while those who had fewer than 4 visits to their HIV
doctor started in a median of 712 days (almost 2 years).
Study participants who started treatment took their
first antiretroviral combination for a median of 356
days, or about a year. Median treatment time was longer
in young people cared for in pediatric HIV clinics (594 days, or about 20 months) than in those cared for
in adult HIV clinics (297 days, or about 10 months).
During the study period, 117 people (59% of those who
started) stopped or switched their antiretrovirals. A
higher proportion stopped than switched: 57% versus
43%. Among the 64 people in care the year after stopping
or switching antiretrovirals, 15 of 15 in pediatric
clinics and 38 or 49 (77.5%) in adult clinics were taking
Figure 1. In a study of 287 young people in the United States with a
CD4 count under 350, two factors raised chances of starting antiretrovirals
independently of all other factors assessed -- having a CD4 count
under 200 rather than between 200 and 350, and keeping four HIV
clinic visits within a year of having a CD4 count under 350 versus keeping
fewer appointments. Young people who went to an adult HIV clinic
(rather than a clinic specializing in care for children and young people)
had a doubled risk of quitting or switching antiretrovirals.
Statistical analysis weighing the impact of numerous
factors on starting antiretroviral therapy found only
two that -- by themselves -- improved chances of starting
(Figure 1): Having a CD4 count under 200 rather
than a count between 200 and 350 doubled chances of
starting therapy. And going to the HIV
clinic four or more times in the year after
having two CD4 counts under 350 more
than doubled chances of starting treatment.
Factors that did not affect chances
of starting antiretrovirals included race,
gender, type of health insurance, year of
becoming eligible for treatment, and going
to a pediatric clinic versus an adult
One factor independently raised the
risk of quitting antiretroviral therapy
or changing antiretrovirals (Figure 1):
Young people going to an adult HIV
clinic had a doubled risk of quitting or
changing antiretrovirals when compared
with those who went to a pediatric HIV
clinic. Race, gender, CD4 count above
or below 200, and number of clinic visits
did not affect chances of quitting or
- What the results mean for you. This
study found that only about two thirds
of adolescents and young adults who met
US guidelines for starting antiretroviral
therapy actually did start during the
study period. People with CD4 counts
under 200 were more likely to start therapy
than those with counts between 200 and 350. But
guidelines issued at the time of the study said adolescents
or adults with a CD4 count under 350 should begin
antiretrovirals, and now guidelines say anyone with
a CD4 count under 500 should start.
The results shed some light on why some young pepole
did not start treatment even though they had a CD4 count under 350: Keeping four or more HIV clinic appointments
after having a CD4 count under 350 more
than doubled the chance of starting therapy. Physicians
are reluctant to start therapy when a person does not
keep appointments. Once antiretroviral therapy begins,
it must be taken regularly, exactly as the physician
instructs. Taking breaks from treatment without a doctor's
advice can make the virus resistant to the drugs
being taken; then those drugs and related drugs lose
their ability to control HIV. People who cannot keep
appointments are probably less likely to take their antiretrovirals
on time every day.
The bottom line is that keeping doctors' appointments
is the essential first step to starting antiretroviral therapy
and continuing therapy successfully. If you have a hard time keeping appointments, you should talk to
your doctor, nurse, or social worker at your clinic to
explain the problem and get help solving it. If there
is a health worker you trust outside your doctor's
office -- perhaps in a community HIV/AIDS organization --
you could discuss problems like this with
them. They can probably help with appointment-keeping
The study also found that young people cared for in
pediatric HIV clinics -- which specialize in caring for
children and adolescents -- were less likely to stop antiretrovirals
or to switch to other antiretrovirals than
people cared for in adult clinics. That finding may
mean the pediatric clinics in this study understand
problems facing young people better than the adult
clinics in this study. If you don't feel your problems
are understood by health workers in the clinic where
you get HIV care, you could raise this issue with the
person you trust most in your clinic. Or you can talk
to an HIV community advocate or someone you trust
outside the clinic. This person may be able to help you
address problems with someone in your HIV clinic.
Antiretroviral combinations prescribed today generally
have fewer side effects and are easier to take
than combinations used often only a few years ago.
But steady pill taking can be difficult no matter what
drugs you take. You should try to work with your
doctor or other health professionals in your doctor's
office to find the right approach to steady pill taking
for you. If you think your antiretrovirals are causing
side effects, you should talk to your doctor immediately.
You should never just stop taking your antiretrovirals
or skip doses.
- Agwu A, Rutstein R, Gaur A, et al. Starting late and stopping early: disparities in HAART utilization for behaviorally
HIV-infected youth. 18th Conference on Retroviruses and Opportunistic Infections. February 27-March 2, 2011.
Boston. Abstract 692.
- Centers for Disease Control and Prevention. Diagnoses of HIV infection and AIDS in the United States and dependent areas,
2008. HIV Surveillance Report, Volume 20. www.cdc.gov/hiv/surveillance/resources/reports/2008report/index.htm.
Accessed March 5, 2011.
- Centers for Disease Control and Prevention. HIV/AIDS surveillance report: cases of HIV Infection and AIDS in the United
States and dependent areas, 2007. February 18, 2009. www.cdc.gov/hiv/surveillance/resources/reports/2007report/.
Accessed March 5, 2011.
- Mascolini M. Finding solutions for HIV's lost generation: adolescents and young adults. RITA! 2010;15(2).
www.centerforaids.org/pdfs/dec2010rita.pdf. Accessed March 5, 2011.
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