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 (Gay et al., 2015). Young peoples service needs are frequently overlooked in HIV programming that is not specifically for young people.

"Young people living with HIV are almost invisible and our needs are given low priority"(Youth living with HIV interviewed in UNESCO and Global Network of People Living with HIV, 2012: 16).

Adolescents have sex. 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. (2007) noted that although "government policy in Zambia states that all sexually active men and women should have access to reproductive healthcare and informationin practice, young people have limited access to such services" (p. 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..." (Boonstra, 2007).

Where once treatment for children with HIV was to prevent death, now the focus is on optimizing health for adulthood (Bamford and Lyall, 2015). "As young people increase as a proportion of the total population of HIV patients, retaining them in HIV care and on treatment will require that these services become more relevant to the needs of young people" (UNESCO, 2013: 37). Yet in Africa, where the majority of adolescents living with HIV live, "dedicated health services for young people are the exception rather than the rule, and little or no provision has been made..." for adolescents living with HIV (Lowenthal et al., 2014: 635). [See also Structuring Health Services to Meet Women’s Needs]

Adolescents Fall Through the Cracks in Health Services

Adolescents have wide-ranging service needs. All adolescents and young people need access to basic health services, including access to condoms for pregnancy and disease prevention as well as access to HIV testing and counseling services. In addition, adolescents living with HIV -- whether they acquired HIV through sexual transmission or who have grown up HIV-positive due to perinatal infection -- have specific needs for health services as well and often these needs are not being met. 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). Few countries where HIV is most prevalent have health providers who are specially trained on adolescent health (Mburu et al., 2013). [See also Safe Motherhood and Prevention of Vertical Transmission ]

Increased Attention is Needed for Adolescent Girls Living with HIV

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). Adolescents living with HIV have complex needs as "they must simultaneously deal with adult issues, such as disclosure, stigma and practicing safe sex while also addressing issues traditionally associated with adolescence such as body image, first sexual experience, peer pressure and forming personal identity" (Mahvu et al., 2013:para 3). Adolescents living with HIV also face discrimination from schools, health services and families (Thupayagale-Tshweneagae, 2010). "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 adolescents living with HIV: "You are HIV-positive. You are not expected to have sex. You are not expected to have a baby" (cited in Obare et al., 2011: 158).

"We don't have adolescent-friendly services because initially it was assumed that a child born with HIV was going to die in a few months, so even services were not designed for adolescents, meaning that their access to treatment is a challenging issue" (Health provider, Zambia, cited in Mburu et al., 2013: 180).

Worldwide, HIV-related mortality increased by 50% among adolescents living with HIV between 2005 and 2012 (Denison et al., 2015). WHO ART treatment guidelines recognize that adolescents do worse than adults across all aspects of the treatment cascade (testing/knowing ones status; on ART; virally suppressed) and call for greater implementation of adolescent-friendly health services (WHO, 2015f). "Globally it is not known how many adolescents are receiving treatment and care for HIV..." (All In to End Adolescent AIDS, 2015d).

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 adolescents living with HIV and 15 caregivers of children living with HIV 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 adolescents living with HIV, 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 adolescents living with HIV, 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).

Increasing access to HPV vaccinations and Pap smears is an important health service for young women. Adolescents living with HIV are particularly at risk of more dangerous strains of HPV, such as 56, which is associated with increased risks of development of invasive cancer (Moscicki et al., 2004a; Moscicki et al., 2004b; Brogly et al., 2007). The initiatives of HPV vaccinations in schools and communities targeting adolescents prior to sexual activity offer a new platform to reach adolescents with information, counseling and services on reproductive health and HIV (Kasedde et al., 2013). [See also Meeting the Sexual and Reproductive Health Needs of Women Living With HIV]"...Now I drink [ART] so that I can live longer" (Adolescent girl age 17 living with HIV in Zambia cited in Denison et al., 2015: 4).

South Africa has instituted health services provision within schools (UNFPA, 2014) as a way to reach adolescents. In 2012, 3,242 consenting students from five randomly selected public sector high schools in rural South Africa were tested for HIV and found HIV prevalence of 6.8% for girls and 2.7% for boys. HIV prevalence increased from 4.6% in 12 to 15 year old girls and to 23.1% in girls over 20 years. In boys, HIV prevalence increased from 2.7% in those aged 12 to 15 to 11.1% over age 20. This effort demonstrated the feasibility of providing HIV testing and counseling from schools linked to HIV testing and counseling services within primary care clinics (Kharsany et al., 2014). HIV testing in schools may enable adolescent girls to access HIV testing prior to their first pregnancy, whereas the current approach of HIV testing during antenatal care misses that window (Kurth et al., 2015). However, providing services within schools, such as HIV testing and counseling, or provision of condoms, has been controversial, with parents disapproving in some communities (Kumi-Kyereme et al., 2014).

Further Analysis of Pre-Exposure Prophylaxis (PrEP) Is Needed for Use Among Adolescent Girls

PrEP is the use of antiretroviral medication by people who are HIV negative to prevent HIV acquisition, with adherence and regular HIV testing essential. High adherence to PrEP can effectively prevent HIV infection (Baeten et al., 2012; Choopanya et al., 2013; Grant et al., 2010, Thigpen et al., 2012 cited in UNAIDS, 2015e) and some of the the benefits of PrEP is that it is under personal control and not seen at the time of a sexual encounter so adolescent girls may decide on their own to use it (UNAIDS et al., 2015). A study in Kenya and South Africa in 2011 and 2012 with focus groups with adolescent girls aged 14 to 17 and young women 18 to 24 found that adolescent girls found PrEP appealing "because it would eliminate concerns about being seen while obtaining condoms from clinics and because they felt that PrEP could be used privately" (Mack et al., 2014: para17). Concerns were raised about whether a male sexual partner would allow use of PrEP, but many felt that obtaining pills would be easier than obtaining condoms. The need for privacy for adolescent girls is linked to community norms, which disapprove of adolescent girls being sexually active (Mack et al., 2014).

WHO now recommends that all people at substantial risk of HIV should be offered PrEP (WHO, 2015g:1). A global consultation of 58 experts convened by UNICEF in July 2015 endorsed the use of oral PrEP among older adolescents (not defined), to achieve the targets of UNICEFs All in to end adolescent HIV campaign (UNICEF, 2015). But no trials have been published to date for pre-exposure prophylaxis among adolescent girls under age 18 (Dellar et al., 2015).

Further evaluation is needed on the feasibility of PrEP use for adolescents. A recent PReP trial with young women in Zimbabwe, South African and Uganda was halted early due to low adherence rates, with lowest rates among young, single women (Marrazzo et al., 2015 cited in Cluver et al., 2015). Most importantly, implementation of PrEP "should not come at the expense of other essential HIV or other key health programmes" (Beyrer et al., 2015: 1483).

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; UNESCO, 2013). 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 prevention or care services.

"I will never tell my child about my HIV infection even when I am dying. I will never tell him" (mother living with HIV in China cited in Zhou et al., 2012: 820).

Since more and more adolescents will have grown up with perinatally acquired HIV, HIV services should be available to all ages without parental consent in order to ensure access to needed services. Clinics can become safe havens for adolescents living with HIV, where adolescents can confide, as one female adolescent, age 16 from Zambia put it: "I really like going to the centre...because we talk" (cited in Hodgson et al., 2012: 1207). But services need to provide different meeting times for discussions based on different ages, with the needs for age 10 different than those of age 17 (Hodgson et al., 2012).

Adolescents who use drugs also need access to services to minimize their risk behavior and can have difficulty accessing services due to age restriction policies. In some countries, opioid substitution therapy is limited to those above age 18, despite the fact that injecting drug use may be initiated prior to age 18. In Albania, 32.2% of 121 young people who injected drugs stated that they initiated prior to age 15; in Romania, 26.7% of 300 young people who injected drugs stated they initiated before age 18 (Busza et al., 2013).

National level policies and programs focused on adolescent service needs are desperately needed. For example, in Nigeria, none exists (Aboki et al., 2014). Ethical principles for international research on adolescents have been developed (Bekker et al., 2014) but research with adolescents remains challenging not only because adolescents and their guardians may need to consent and understand the consent process depending on national laws, but also because of national laws requiring the mandatory reporting of children experiencing abuse, neglect or living in child-headed households (Bekker et al., 2014).

Dedicated budget lines for adolescents, particularly those at highest risk of HIV acquisition or living with HIV, are also critical (UNICEF, 2013). Additionally, databases to monitor, for example, adolescent use of harm reduction and HIV prevention services with information on age, sex, services received, test results, etc. with codes to protect identity, can assess whether adolescents at risk are being reached (UNICEF, 2013). "...Programmes remain inadequate to the major challenges adolescents face" (Cluver et al., 2015: para 24)."No one wants to start on methadone at age 18 because they will register you at oncethey will give data on you everywhere, at school, local police and to doctors" (young woman in Kyrgyzstan cited in Krug et al., 2015: 73).

Disaggregated Data Is Needed

Data collection, including in the Demographic and Health Surveys (DHS), is often grouped for either children age under 5 or those over age 15, with little or no data collection on ages 10 to 19 i.e. adolescents (Pitorak et al., 2013). Data on who accesses HIV services and who is lost to follow up need to be disaggregated by sex, age and key population not just as adults or children. In addition, data should be disaggregated by marital status, as access to services and sexual behaviors differ in many countries based on marital status. 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). Interventions during these ages could address healthy transitions to young adulthood in the post-pubescent ages (Sommer, 2011). A recent article reported on almost 15,000 patients lost to follow up but by the categories adults and children with no ages given (Rachlis et al., 2015). A review of adolescent and young adult populations, ages 12 to 24 years of age, found that there are limited data on ART adherence amongst this population globally (Kim et al., 2014: 1945). 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 peoples 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). Without this data, a multitude of questions about adolescent HIV service programming remains, including: What are the lifelong consequences of HIV and ART? What suboptimal ART options and formulations have adolescents been exposed to and what are the best ways forward? Every year that goes by without dedicated surveillance of [perinatally HIV-infected adolescents] means that tens of thousands of children could be lost in the crowd (Sohn and Hazra, 2013: para 38).