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.
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.
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 antiretrovirals.
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 clinic.
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 switching antiretrovirals.
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 issues.
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.