Increasing Access to Services
While the literature on access to HIV services by adolescents is limited, the literature on access to sexual and reproductive health services more broadly demonstrates that youth-friendly approaches can increase use of reproductive health care services by female adolescents (Neukom and Ashford, 2003). Young people's service needs are frequently overlooked in HIV programming that is not specifically for young people. Numerous studies in developing countries show that adolescents under the age of 15 are sexually active. A nationally representative sample of youth in South Africa found that 18% of young men and 8% of young women said they had had sex for the first time at age 14 or younger (Pettifor et al., 2009). As a result of a 2002 study of Zambian secondary school students, Warenius et al. noted that although "government policy in Zambia states that all sexually active men and women should have access to reproductive healthcare and information... in practice, young people have limited access to such services" (Warenius et al., 2007: 534). Increasing services for adolescents need not reinvent the wheel, however; "strengthening the health care system to better serve adolescents requires taking a strategic look at ways to build capacity within the existing system, rather than creating a parallel structure focused only on adolescents" (Boonstra, 2007). For example, local government efforts in Tanzania to scale up youth-friendly services were successful in training 429 health workers in 177 health units to improve confidentiality and young people's rights to services (Renju et al., 2010). [See also Structuring Health Services to Meet Women’s Needs]
Adolescents Fall Through the Cracks in Health Services
Some girls can experience menarche as early as age 8, long before they might be considered an adolescent. The UN defines a child as someone under 18; yet youth, who are aged 15 to 24 exist "in an ambiguous state that as both child and adult" (Chandler, 2011: S346). "Adolescents and young adults, both in clinical practice and in research, tend to fall between the cracks of adult and pediatric medicine" (Kapogiannis et al., 2010: S1). Demographic and Health Surveys (DHS) does not track children after age 5 and until age 15. Interventions during these ages could address healthy transitions to young adulthood in the post-pubescent ages (Sommer, 2011). Given the variability of experiences during these years, it is critical to differentiate between the needs of adolescents ages 11 to 14, those who are 15 to 17, and those who are over age 18 (Wilson et al., 2010a).
Increased Attention is Needed for Adolescent Girls Living with HIV
"Adolescents growing into adults might not be willing to obtain SRH services from the adult care centers, yet they no longer fit within the pediatric clinic setting" (Obare et al., 2011: 161)
In many developing countries, the roll out of treatment for the prevention of vertical transmission should lead to a reduction in vertical transmission and a reduction in numbers of orphans, but "it will also be accompanied by a large number of children entering adolescence and adulthood with a chronic infectious disease" (Petersen et al., 2010: 970). The number of girls aged 10 to 14 living with HIV has grown from about 50,000 in 1999 to more than 300,000 in 2010 (UNAIDS, 2011a). "In recent years, late presentation of vertically acquired HIV infection has become an increasingly important cause of adolescent mortality and serious morbidity in southern Africa" (Ferrand et al., 2011: 2325). In Botswana, HIV prevalence among adolescents aged 15 to 19 is 6.6% (no sex disaggregated data provided) (Ministry of Health, Botswana, 2008 cited in Thupayagale-Tshweneagae, 2010). In Zimbabwe in 2008, over 100,000 adolescents aged 10 to 19 were registered in HIV care services (Ferrand et al., 2010). Yet to date, there is no specific indicator for the percentage of HIV-related treatment services for young people (UNAIDS, 2011e). For the new generation of adolescents who acquired HIV perinatally or through sexual activity or otherwise, the "sexual and reproductive health needs and rights of young people living with HIV cannot be adequately addressed because young positives are neither children nor adults... [yet] most programs in developing countries... are designed around pediatric or adult care" (Baryamutuma and Baingana, 2011: 211).
For adolescents who are living with HIV, clear guidelines are needed in some countries to address sexual and reproductive health issues (Obare et al., 2011). "Vertically infected HIV-positive adolescents face formidable barriers to accessing diagnosis, including... vulnerability following parental illness and death, the need to be accompanied by a guardian able to provide consent, and a lack of appropriate health information..." (Ferrand et al., 2011: 2331). HIV-positive adolescents face discrimination from schools, health services and families (Thupayagale-Tshweneagae, 2010). "While life expectancy for perinatally-infected children on treatment has yet to be established, experience from the developed world indicates that survival into adulthood is now possible" (Battles and Wiener, 2002 cited in Li et al., 2010c: 756). "Despite the growing number of older children and adolescents who develop symptoms, there has been little focus on providing this group with specialized HIV care" (Ferrand et al., 2010: 428). Providers need training to provide nonjudgmental care. Instead, one study found that providers would say to HIV-positive adolescents: "You are HIV-positive. You are not expected to have sex. You are not expected to have a baby" (Obare et al., 2011: 158).
In addition to greater numbers of adolescents living with HIV, there will be a large and growing population of children who are HIV-negative but who were exposed to antiretroviral drugs when their HIV-positive mothers were pregnant or as infants, and these children will need to be followed to determine the long-term safety of these exposures (Hazra et al., 2010).
Increasing Access to Treatment and Support Services Helps Young People Live Positively
Access to treatment and support can reduce exposure to stigma for young people living with HIV and help them live positively. A qualitative study with 25 HIV-positive adolescents and 15 caregivers of HIV-positive children in South Africa found that "adolescents uniformly cited the availability of life prolonging medication as assisting them to cope with their HIV-positive serostatus" (Petersen et al., 2010: 975).
Focus group discussions held in Botswana with 18 HIV-positive adolescents, 12 of whom were female, found that adolescents living with HIV reported that they adhere to antiretroviral treatment in order to protect themselves from stigma and discrimination. Keeping healthy through antiretroviral therapy keeps their HIV status secret: "This is my third year taking ARVs and nobody knows except my support group" (Thupayagale-Tshweneagae, 2010: 262). Focus group discussions held in Kenya with 26 HIV-positive adolescents, 10 of whom were female, found that clinic and clinic support groups helped them have optimism for the future. The adolescents stated that the clinic treated them well and was a source of support, as well as providing life saving treatment. The adolescents were "aware of what the virus could have cost them and grateful for what they still had" (Li et al., 2010c: 753). Some girls feared how to finish school, work and have a boyfriend "as a person with HIV" (Li et al., 2010c: 755).
HPV Vaccinations May Protect Girls from Acquiring HIV
A 2007 meta-analysis found that HPV infection is much more prevalent in women with HIV (De Vuyst and Franceschi, 2007). A study in Rwanda with 366 HIV-negative women found an increased risk of HIV acquisition in HIV-negative women with prior high-risk HPV infection (Veldhuijzen et al., 2010). Clinical trials are underway to assess HPV vaccination in perinatally infected HIV-positive adolescents. Vaccination against HPV strains 16 and 18 is effective and these strains cause approximately 70% of cervical cancers worldwide (Future II Study Group, 2007). However, HPV vaccines do not protect against all types of HPV strains that cause cancer and therefore, all women, even those who have received the HPV vaccine, should still get regular pap smears or screening for cervical cancer. It is critical to assess if the HPV vaccine will lead to long-term protection for women living with HIV (Jeronimo, 2012). HPV vaccination for adolescent girls has been rolled out in Peru, Uganda, India and Vietnam, with high coverage rates achieved in demonstration areas (LaMontagne et al., 2011). Vaccinating young girls against HPV may provide additional protection against cervical cancer, particularly if the young women acquire HIV as they get older. Studies have shown a higher rate of cervical cancer among women living with HIV. However, studies of women living with HIV from places as diverse as Zambia, Brazil and the U.S. have found that HIV-positive women tend to have HPV strains other than 16 and 18 (McKenzie et al., 2010; Pantanowitz and Michelow, 2010). Increasing access to HPV vaccinations is an important service for young women, but effectiveness for those who become HIV-positive should be the subject of further research (Pantanowitz and Michelow, 2010; Clark and Hagensee, 2009; Desruisseau et al., 2009). [See also Meeting the Sexual and Reproductive Health Needs of Women Living With HIV]
Policy and Legal Barriers to Access Must be Overcome
Policy and legal barriers often prevent young people from accessing services. Many health services will not provide sexual and reproductive health services to unmarried women. In most countries, young people under the age of 18 need parental consent to obtain medical care, including HIV testing and counseling, despite the fact that counseling and testing can lead young people to change their behavior and many youth are sexually active before age 18. In some countries, health care providers are not allowed to maintain patient confidentially in youth under age 16 (UNAIDS, 2011e). Laws that require providers to seek parental consent before testing minors or to provide test results to parents may make adolescents reluctant to seek services. Adolescents must feel comfortable accessing necessary services in order to protect themselves from HIV. Surveys of nearly 20,000 adolescents in Burkina Faso, Ghana, Malawi and Uganda found that adolescents prefer services from clinics and hospitals rather than traditional healers and pharmacies but are often embarrassed or too shy to seek them out (Biddlecom et al., 2007).
Disaggregated Data Is Needed
Effective programs for young people need to understand how young people use services and what other barriers (e.g., community and provider attitudes) must be overcome. "Effectiveness is hindered by the lack of systematic attention to gender in designing programmes for most-at-risk young people. Most countries do not have accurate data on the population of young men and women, nor do they maintain records by sex of young people's use of services" (UNFPA Inter-Agency Task Team on HIV and Young People, 2008: 4). To ensure an accurate picture of the sexual and reproductive health needs of young people, basic data on adolescents should be disaggregated by gender with more precise age groups, such as ages 1011; 1214; 1517; and 1819 (Dixon-Mueller, 2007). In addition, data should be disaggregated by marital status, as access to services and sexual behaviors differ in many countries based on marital status.