Children and adolescents living with human immunodeficiency virus (HIV) represent a population that requires a unique approach to HIV care. Prevention, testing, initiation of antiretroviral therapy (ART), and retention and engagement in care are critical steps. Each step requires providers to address age-specific barriers, so that successful and prolonged viral suppression can occur. Adherence to ART, disclosure of HIV-positive status, and stigma are examples of struggles faced by youth, their families, and health care providers. A multifaceted approach and thoughtful transitions of care are needed, but with sustained ART, youth living with HIV can survive and thrive with the expectation of a normal lifespan.
Key points
- •
HIV remains a major public health crisis in children and adolescents across the world.
- •
There are 2 key populations of youth living with HIV, those who acquire HIV perinatally and those who acquire HIV through risk behaviors later in childhood or adolescence.
- •
Beyond technical and scientific advances, effective prevention of new HIV infections requires addressing a complex combination of social, economic, behavioral, structural, and logistic obstacles.
- •
For youth living with HIV to achieve viral suppression and optimal health outcomes, providers should be aware of and address age-specific barriers to HIV testing, linkage to care, ART adherence, and retention in care.
Introduction
Since the discovery of human immunodeficiency virus (HIV) in 1983, momentous advances in the recognition, treatment, and prevention of HIV infection have averted an estimated 9 million deaths so far in the new millennium. HIV/AIDS remains, however, one of the largest international public health crises. Children and adolescents are especially vulnerable populations, and the identification and care of youth living with HIV present unique challenges.
There are 2 distinct populations of youth living with HIV. There are those who acquired HIV through perinatal transmission and require HIV care from the time of their birth and those who acquired HIV through risk behaviors in adolescence, such as unprotected sexual encounters or injection drug use. Both populations of HIV-seropositive youth require tailored approaches for their care to be successful. The cascade of care for individuals living with HIV begins with diagnosis, counseling, linkage to care, and initiation of antiretroviral therapy (ART), at which point the work of patients and providers has only just begun. Strict adherence to ART, persistence in ART, and retention in care are necessary for viral suppression and require collaboration of patients, health care staff, social workers, and physicians.
As of 2016, 1.8 million children under the age of 15 are living with HIV and 87% of these children live in sub-Saharan Africa. At the end of 2013, 1999 children under the age of 13 lived with HIV in the United States, and 73% of these children acquired the infection through perinatal transmission. Approximately three-quarters of adolescents living with HIV worldwide represent those that were infected at birth, which is evidence of the positive impact of ART on life expectancy of perinatally infected children. The rates of perinatal HIV infection in the United States are very low and the majority of adolescents living with HIV in this country acquired the virus through risk behaviors. Of the approximately 2 million adolescents living with HIV across the world, only 1% is from the United States. This adolescent 1% accounts for 22% of all new HIV infections nationally. Young male, transgender African American adolescents are the highest risk group. Globally, however, girls and young women are at highest risk due to culture-specific gender norms, sexual abuse, intergenerational sexual relationships, and enhanced biologic suceptibility.
Refugees and immigrants represent another special population because up to 14% are leaving countries of high HIV prevalence. High rates of pregnancy were noted in 1 cohort of HIV-infected refugees in Rhode Island, highlighting the need for preventative HIV perinatal care. Among approximately 7000 children adopted internationally over a 15-year period (1990–2005), 12 children were found infected with HIV.
In 2016, only 50% of perinatally exposed children globally were tested within the recommended 2 months. Of the children who tested positive for HIV, only 50% are receiving treatment, although this varies by country and region. Compared with Europe and Central Asia, where more than 95% of children younger than 15 years old living with HIV are receiving ART, sub-Saharan Africa has 1.83 million or 73% of their children living with HIV who are untreated. In the rest of Africa and the Middle East, 86% of children living with HIV are untreated. For infants born with HIV, treatment is crucial to prevent rapid progression to AIDS in the early years of life. Without ART, half of these children will die by age 2 years old.
Statistics are similarly bleak for youth who acquire HIV later in life. In the United States 44% of young people living with HIV are unaware of their diagnosis. Adolescents in sub-Saharan Africa are even less informed of their HIV infection status, with only 13% of adolescent girls and 9% of adolescent boys receiving testing in the most recent 12 months. HIV is the number 2 cause of death of adolescents globally, and it is the number 1 cause of death of adolescents in Africa. Disturbingly, since the year 2000, deaths have tripled among adolescents with AIDS, which is in stark contrast to other affected groups that have seen improved mortality rates. Disparities in resources, health care, and infrastructure; stigmatizing cultural influences; and a poor understanding of HIV infection all play a role in the current state of HIV care.
Introduction
Since the discovery of human immunodeficiency virus (HIV) in 1983, momentous advances in the recognition, treatment, and prevention of HIV infection have averted an estimated 9 million deaths so far in the new millennium. HIV/AIDS remains, however, one of the largest international public health crises. Children and adolescents are especially vulnerable populations, and the identification and care of youth living with HIV present unique challenges.
There are 2 distinct populations of youth living with HIV. There are those who acquired HIV through perinatal transmission and require HIV care from the time of their birth and those who acquired HIV through risk behaviors in adolescence, such as unprotected sexual encounters or injection drug use. Both populations of HIV-seropositive youth require tailored approaches for their care to be successful. The cascade of care for individuals living with HIV begins with diagnosis, counseling, linkage to care, and initiation of antiretroviral therapy (ART), at which point the work of patients and providers has only just begun. Strict adherence to ART, persistence in ART, and retention in care are necessary for viral suppression and require collaboration of patients, health care staff, social workers, and physicians.
As of 2016, 1.8 million children under the age of 15 are living with HIV and 87% of these children live in sub-Saharan Africa. At the end of 2013, 1999 children under the age of 13 lived with HIV in the United States, and 73% of these children acquired the infection through perinatal transmission. Approximately three-quarters of adolescents living with HIV worldwide represent those that were infected at birth, which is evidence of the positive impact of ART on life expectancy of perinatally infected children. The rates of perinatal HIV infection in the United States are very low and the majority of adolescents living with HIV in this country acquired the virus through risk behaviors. Of the approximately 2 million adolescents living with HIV across the world, only 1% is from the United States. This adolescent 1% accounts for 22% of all new HIV infections nationally. Young male, transgender African American adolescents are the highest risk group. Globally, however, girls and young women are at highest risk due to culture-specific gender norms, sexual abuse, intergenerational sexual relationships, and enhanced biologic suceptibility.
Refugees and immigrants represent another special population because up to 14% are leaving countries of high HIV prevalence. High rates of pregnancy were noted in 1 cohort of HIV-infected refugees in Rhode Island, highlighting the need for preventative HIV perinatal care. Among approximately 7000 children adopted internationally over a 15-year period (1990–2005), 12 children were found infected with HIV.
In 2016, only 50% of perinatally exposed children globally were tested within the recommended 2 months. Of the children who tested positive for HIV, only 50% are receiving treatment, although this varies by country and region. Compared with Europe and Central Asia, where more than 95% of children younger than 15 years old living with HIV are receiving ART, sub-Saharan Africa has 1.83 million or 73% of their children living with HIV who are untreated. In the rest of Africa and the Middle East, 86% of children living with HIV are untreated. For infants born with HIV, treatment is crucial to prevent rapid progression to AIDS in the early years of life. Without ART, half of these children will die by age 2 years old.
Statistics are similarly bleak for youth who acquire HIV later in life. In the United States 44% of young people living with HIV are unaware of their diagnosis. Adolescents in sub-Saharan Africa are even less informed of their HIV infection status, with only 13% of adolescent girls and 9% of adolescent boys receiving testing in the most recent 12 months. HIV is the number 2 cause of death of adolescents globally, and it is the number 1 cause of death of adolescents in Africa. Disturbingly, since the year 2000, deaths have tripled among adolescents with AIDS, which is in stark contrast to other affected groups that have seen improved mortality rates. Disparities in resources, health care, and infrastructure; stigmatizing cultural influences; and a poor understanding of HIV infection all play a role in the current state of HIV care.
Preventing human immunodeficiency virus/AIDS in children and adolescents
The Joint United Nations Programme on AIDS (UNAIDS) and the World Health Organization (WHO) are leading a global program with a goal to end AIDS by 2030, a goal that requires both a greater focus on ART for people already living with HIV infection and a renewed emphasis on preventing new HIV infections.
Overall funding for global HIV/AIDS programs has increased over the past several years, with the US President’s Emergency Plan for AIDS Relief (PEPFAR) the largest global funding source for effective prevention programs. The proportion of HIV/AIDS resources available for prevention of new HIV infections, however, has fallen slightly over that period, in part because the number of people living with HIV who are receiving lifelong treatment with relatively expensive ART has been increasing rapidly. As a consequence, global progress toward the prevention goal of fewer than 500,000 new HIV infections per year is considered off-track. Although progress toward the ultimate prevention goal of a successful HIV vaccine has not yet met expectations, the prevention of mother-to-child transmission of HIV (MTCT) has been both a US and a global success story.
Preventing Mother-to-Child Transmission of Human Immunodeficiency Virus in Pregnancy and in the Perinatal Period
Globally, MTCT accounts for more than 90% of new HIV infections among children. The WHO has put forward a comprehensive approach to prevention of MTCT ( Box 1 ). Although overall global progress has been sporadic, significant progress has been made in certain countries. For example, in 21 priority African countries, the proportion of known HIV-infected pregnant women who received ART in pregnancy increased from 36% in 2009 to 80% in 2015. The numbers of HIV-infected children fell correspondingly by 48% between the years 2009 and 2014. Six of these priority countries reduced MTCT by at least 90% over that period. Finally, by 2016, Cuba, Belarus, Armenia, and Thailand each reduced MTCT to the point that it is no longer considered a significant public health problem in those countries.
- 1.
Prevent HIV infections among adolescents and other women of childbearing age.
- 2.
Help HIV-infected adolescents and other women avoid unintended pregnancy.
- 3.
Prevent HIV transmission from HIV-infected adolescents and other women to their infants.
- 4.
Provide appropriate treatment care and support to mothers living with HIV and their children.
Without any intervention for HIV-infected pregnant women, the risk of MTCT ranges from 15% to 45%. Effective interventions, however, can reduce this transmission risk to less than 5%. Within the United States, although approximately 8500 HIV-infected women give birth annually, the number of children who are HIV-infected in utero or in the perinatal period is now fewer than 100 per year. The lower rate of perinatal transmission is in part a result of high rates of antenatal HIV testing and counseling. In addition, HIV-infected pregnant women in the United States have good access to antiretroviral medicines during pregnancy and delivery. It is recommended that pregnant women who do not have maximally suppressed HIV viral loads at the time of labor should have a cesarean section delivery to further reduce the HIV transmission risk to their newborns.
Prevention of Mother-to-Child Transmission of Human Immunodeficiency Virus Through Breast Milk
MTCT may still occur beyond the perinatal period due to HIV transmitted via breast milk. Although the HIV transmission risk is lower if breastfeeding mothers are on ART, more than half of all MTCT HIV infections in 2013 were attributed to breast milk transmission. Infant formula feeding is the optimal way to eliminate that risk. Infant formula use, however, may not be possible in all circumstances due to the cost of formula and poor access to clean water. In such cases, exclusive breastfeeding rather than mixed feeding (the latter is associated with greater HIV transmission risk) should continue until weaning. Mothers should continue ART to keep their breast milk viral load suppressed and infants should receive their own ART until they reach 6 weeks old.
Preventing Human Immunodeficiency Virus Infections Among Adolescents
In contrast to perinatal infections and infections in older adults, where HIV infection and mortality rates have been falling, the adolescent age group has seen increasing rates of both HIV infection and HIV-related mortality. Approximately two-thirds of these new HIV infections and deaths are occurring in female adolescents. Effective prevention of new HIV infections among adolescents is a complex issue because the causes of HIV transmission vary in different cultural, social, economic, and geographic settings. Appropriately, there is a broad range of prevention strategies, which include
- 1.
Raising awareness of HIV/AIDS, its transmission mechanisms, and its behavioral components
- 2.
Encouraging community-based and school-based sex education
- 3.
Increasing use of male and female condoms
- 4.
Increasing uptake of VMMCs
- 5.
Increasing use of harm reduction interventions, such as clean injection equipment
- 6.
Increasing uptake of pre-exposure (drug) prophylaxis (PrEP) and other ART use to lower viral load
- 7.
Use of vaginal microbicides
- 8.
Approaches to reduce child marriage
- 9.
Other structural approaches to address gender inequality and gender-based violence
Although each of these individual interventions has been demonstrated as efficacious in one setting or another, the optimal combination in any one location necessarily is dictated by local circumstances.
Recently, a group of United Nations agencies along with the US PEPFAR program launched the “ALL IN! to End Adolescent AIDS” agenda. This agenda will help address and implement interventions similar to those recently begun by the DREAMS Innovation Challenge supported by the US PEPFAR program in collaboration with the Bill & Melinda Gate Foundation, several drug companies, and other nongovernmental organizations. The DREAMS Innovation Challenge is focused on (1) keeping girls in school, (2) strengthening the service delivery capacity of community-based organizations, (3) linking men to services; (4) supporting the use of PrEP, (5) linking adolescents to employment opportunities, and (6) increasing the use of data to inform policy.
Voluntary Medical Male Circumcision
Medical male circumcision may be of particular interest to pediatricians as a prevention strategy. After a compellingly high (>55%) efficacy of voluntary male medical circumcision (VMMC) was demonstrated to reduce men’s risk of acquiring HIV infection in several randomized controlled trials, use of that intervention was recommended by the WHO and UNAIDS. By late 2015, approximately 12 million adolescent men and boys had been circumcised in 14 priority African countries. Current program efforts are focused on further integrating VMMC services within routine health systems, investigating safe alternatives to surgical circumcisions, and providing sufficient counseling to ensure that circumcision recipients understand that protection from HIV is not absolute and still requires condom use and avoiding other high-risk behaviors. Expanded use of infant male circumcision as an HIV prevention intervention is also being investigated in several African countries.
Antiretroviral therapy adherence
Unlike other chronic diseases where even partial adherence to medications may be adequate treatment, poor adherence to ART risks creating resistant HIV strains that are difficult or impossible to treat and may then be transmitted. Adherence rates more than 90% have been considered necessary to achieve viral suppression. Adherence rates among adolescents, however, range from 65% to 90%, with 1 study in the United States reporting adherence rates of 65%. Where ART is available and accessible there are still approximately a quarter of children and adolescents who are not taking their pills regularly. Evidence-based strategies to improve adherence in adolescents are critical for individual health and to prevent transmission. Development of these strategies requires understanding of age-specific barriers to adherence.
Barriers in Antiretroviral Therapy Adherence Specific to Infants and Children
For infants and very young children, many logistical factors impede adherence despite the best intentions of caregivers. Liquid ART formulations are often bitter and poorly tolerated ; their cost is up to 4 times higher than tablets; and the bulk and weight of multiple months of liquid ART makes them conspicuous and difficult to transport and store. Dosing of liquid formulations requires medication dispensers with markings, which may present a challenge for caregivers with poor vision or lack of education. For children over the age of 2, tablets are preferred to liquid formulations. To avoid liquid formulations, some caregivers report crushing tablets or opening capsules to sprinkle them over food, which may result in inadequate dosing of ART. Gastrostomy tubes have been used to provide a more reliable route of administration. Studies showed that gastrostomy tubes were associated with improved adherence in young children and decreased the time required to administer ART. They may also be used for nutritional supplementation, which has been shown to increase weight and was associated with decreased hospital visits and mortality. The routine use of gastrostomy tubes, however, is not recommended given the cost, practical limitations, and related risks.
For children old enough to swallow nonliquid formulations, other barriers remain. Taking ART on an empty stomach can be uncomfortable and lack of food is a reality for many children and adolescents. In a study in Uganda, 25% of children refused to take their medication if food was not available. Children reported that lack of assistance from adult caregivers and forgetfulness were reasons for nonadherence. Children with caregivers reporting substance abuse, lower levels of education, or poor understanding of ART also had lower adherence. Although adolescents may have more weighty social and emotional challenges associated with their HIV-positive status, younger children are not unaffected. Young children also reported hopelessness, depression, and fear of taking medications in front of other children, which is of special concern in the orphan population or among children at boarding schools. Living in a rural setting is a risk for decreased ART adherence, with 1 study showing that children and adolescents who live more than 10 km from medical care are more than twice as likely to be nonadherent to ART.
Disclosure of Human Immunodeficiency Virus Status to Seropositive Youth
Children may be too young to understand their HIV-positive status and knowing the appropriate time and setting for disclosure is understandably often a challenge for caregivers. The WHO recommends that children of school age should be informed of their HIV-positive status and that younger children should be told in an incremental manner in relation to their cognitive capabilities. In the context of a supportive caregiver relationship, disclosure has been shown to improve medication adherence, although full disclosure is only performed 17% to 31% of the time. Complicated family and social factors can also play a major role. Orphans are more likely to be given full disclosure and studies have shown that biological parents have fear of disclosing to their children due to feelings of culpability. Caregivers’ fear of stigmatization, negative emotional impacts on the affected child, or uncertainty of how to disclose HIV positive status are some of the major motivations for partial disclosure or nondisclosure. Physicians should be aware of the challenges of disclosure and address this as part of a social history assessment to provide guidance and refer caregivers to available resources.
Adolescent-Specific Barriers to Adherence
Adolescence presents myriad challenges for children transitioning into adulthood, including discovery of sexuality, independence, and self-identity. HIV infection in adolescents adds an enormous burden and without adequate social support by family or caregivers adherence to ART is jeopardized. Disclosure to other family members, health care providers, and sexual partners is anxiety provoking and has been reported as a reason for nonadherence. In the United States, adolescents who acquire HIV through risk behaviors reported higher rates of nonadherence than those who acquired HIV perinatally. Many perinatally infected adolescents have been linked to care since an early age and are more likely to have an involved caregiver and access to health care services, such as medication delivery. Regardless of the means of transmission, caregivers reported that depression, poor self-image, and peer pressure all affected adolescents’ likelihood of taking their ART regimen. Anticipated or experienced stigma was reported as the main barrier to adherence in adolescents living with HIV. Stigmatizing attitudes regarding HIV are prominent throughout the world and youth living with HIV often face discrimination. Several misconceptions about HIV exist that discourage voluntary testing, taking medications in public, or going to regular health care appointments. These misapprehensions include the belief that HIV is a result of divine punishment or a result of licentious sexual practices.
Facilitators of Adherence
Several themes reappear in discussions of adherence for children and adolescents. Awareness of HIV-positive status and understanding the implications and importance of ART are fundamental to fostering good habits and finding a supportive community. Social support is one of the most important facilitators of adherence, which can come from caregivers, other family members, health care workers, or other peers living with HIV. Newer resources include online support groups, where those living with HIV can communicate anonymously with others and offer encouragement or ask questions. Strategic planning of location, timing, and method of ART consumption is helpful for many children and adolescents. Examples given by families included using alarms and log books as reminders as well as keeping ART in a consistent location that is convenient and safe. Extra support from health care facilities is also helpful for many, including transportation services, telephone calls and text message reminders for appointments, and food services.
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
