Youth make up a growing share of those with HIV and are less likely to medicate properly. New approaches are needed to protect youth.
A youth is tested for HIV, Kathmandu, Nepal, 1 December 2015. (EPA/NARENDRA SHRESTHA)
Young people, who represent a growing share of those with the AIDS virus, are struggling to follow the prescribed course of medication to control HIV, and new approaches are needed to help them suppress the infection.
A person with the human immunodeficiency virus (HIV) used to be doomed to die, but that is no longer the case. By taking a daily pill, someone with HIV can lead a long and healthy life, and not contract acquired immunodeficiency syndrome (AIDS).
But that means taking antiretroviral medication. A recent study of HIV care for young adults that tracked newly-diagnosed U.S. youth found only 12% of participants achieved viral suppression after five months.
Viral suppression is crucial for both “the health of the self and the health of others,” said one of the study’s authors, Kenneth Mayer, professor of medicine at Harvard Medical School. Viral suppression reduces HIV to undetectable levels and prevents transmission of the virus to others.
Of the 1,411 newly diagnosed HIV-positive youth who participated in the study published in the Journal of Acquired Immune Deficiency Syndrome (JAIDS), one quarter failed to access care at all and only 166, or 12%, achieved viral suppression. That compares to an overall viral suppression rate of 60% in the U.S. population.
Addressing the treatment gap is crucial. Globally, more than 30% of all new HIV infections occur in young people aged 15 to 25, according to the World Health Organization (WHO). And a growing number of children are infected with HIV at birth. Today, more than five million young people live with HIV, according to the WHO.
“Treating HIV can be really daunting for young people because antiretroviral medication is a lifelong commitment,”said Alexis Palmer-Fluevog, Health Science professor at Langara College in Vancouver, Canada. Daily medication is currently the only way to maintain viral suppression, and the virus can rebound very quickly.
Youth face a host of barriers that make it harder for them to obtain treatment and to remain on antiretrovirals.
“For some individuals, there are simply economic barriers,” Mayer said. In Canada, antiretrovirals cost around US$10,600, a year according to the Ontario Ministry of Health. In the United States, the cost is US$39,000, according to Medicaid data.
Apathy can be a problem.
Prices elsewhere vary considerably. Medication in Switzerland and Germany costs more than €20,000 a year, according to the European Centre for Disease Prevention and Control (ECDC). But 91% and 84% of these costs, respectively, are covered by health insurance.
Meanwhile, in some counties with much lower antiretroviral prices, like Latvia and Lithuania, less than 30% of the costs are covered, according to the ECDC.
Awareness can be an issue. “Almost half of youth who are HIV-infected in the U.S. are unaware of their status,” Mayer said. By comparison, 85% of those infected with HIV in the United States know their status, a study on the HIV continuum of care has found.
Apathy can pose problems. Many people are less concerned about dying from HIV than they once were.
“This is what we call ‘therapeutic optimism,’” Mayer said. “HIV is not the lethal disease it once was in the ‘80s.” Treatment is better than ever before, and there is pre-exposure prophylaxis, or PreP, which offers people at risk daily medicine to lower their chances of getting the HIV virus, according to the U.S. Centers for Disease Control and Prevention (CDC).
Youth who have the hardest time suppressing the virus include the homeless, those with significant behavioral or mental health issues, those with substance-abuse problems and survivors of trauma.
For these HIV-positive youth, treatment may compete with other priorities, such as finding housing or treating addiction.
There is also mistrust in the healthcare system, which can limit engagement and care for some individuals, especially those from communities of colour, which have long suffered racism in the HIV/AIDS epidemic that continues today.
“People of colour report being disrespected, experiencing microaggressions and other kinds of anticipatory problems in seeking care,” Mayer said, referring to individuals who will not seek care if they anticipate discrimination or racism.
What is more, HIV can be associated with homophobia, dissuading some people from seeking care. “The population where HIV is least controlled in the United States is among young men of colour who have sex with other men,” Mayer said.
“There are high levels of perceived and experienced stigma around HIV, particularly for youth growing up in non-affirming environments,” Mayer said. These youth may not be comfortable seeking care because they do not want others to know their status and are concerned about their privacy.
Better health interventions are needed to combat the spread of HIV among young people. “Currently, there is a real lack of youth-friendly messaging and services,” said Palmer-Fluevog.
Education is a starting point. Condom use has declined, people tend to have more sexual partners than in the past and many HIV-positive youth do not know they are infected, according to the CDC. These issues could be addressed with safe sex education, better public health information about the risks of HIV transmission and incentives to complete sexual health checkups.
Rapid testing and treatment are crucial. “The shorter the time between a positive HIV test result and being brought to a clinic for treatment, the more likely they will have longer term viral suppression,” said Bill Kapogiannis, the lead author of the JAIDS study and a physician at Eunice Kennedy Shriver National Institute of Child Health and Human Development.
The ‘gamification’ of HIV treatment
It is essential to develop strategies to ensure HIV-positive youth remain in care. Of the youth tracked in the JAIDS study, barely one third remained in care after five months.
“Gamification” of HIV treatment could help youth take their medication, research from the Desmond Tutu HIV Foundation in Cape Town, South Africa has shown. For example, pill-taking could be turned into a game played on a smartphone. A number of such apps have been developed, but they remain in clinical trials.
South Africa offers adherence clubs, where people with HIV can pick up pills and discuss treatment issues with other HIV patients. The clubs ensure adherence to treatment at much higher rates than traditional clinics.
Natasha Comeau is a fellow in global journalism at the Dalla Lana School of Public Health at the University of Toronto. She holds a Masters of Global Affairs from the Munk School at the University of Toronto, where she focused her studies on development and global health. Comeau has also written for News Decoder on at-home testing for STDs and youth inactivity levels.