"I go to a free clinic that I feel really comfortable in. It's really family-oriented. The people are really caring, and they all know me. When I was 19, I took the HIV test on a whim. I really didn't expect a positive result. But that's what it was. Everybody working at the clinic cried."
-- Ayisa, 20, New York
Advances in science and medical care have enabled individuals living with HIV to live longer, healthier lives. Drugs and treatments now available to arrest or event prevent opportunistic infections that previously led to death. New classes of drugs now in development may hold promise for dramatic improvements in life expectancy and quality of life. However, in order to access such care, individuals must know their HIV status and be connected to a continuum of care.
Millions of young people who have engaged in high-risk behaviors do not know their HIV status. Adolescents should be strongly encouraged to learn their HIV status. A negative test provides the best opportunity to reinforce the importance and efficacy of risk-reduction behaviors. A positive test provides an immediate opportunity to link those who are HIV-positive to treatment, often at an early stage of disease progression. Such early intervention has been shown to be highly effective at prolonging an improving quality of life.
In 1994, the Centers for Disease Control and Prevention (CDC) supported HIV counseling and testing services in approximately 9,600 sites throughout the U.S. Those sites accommodated approximately 400,000 visits by persons 19 years of age or younger. Many of those services are provided at little or no cost to youth with parental permission. In addition, the CDC supports the National AIDS Hotline an the National AIDS Clearinghouse, which provide referral and information services through toll free telephone services. Both are private, free, and confidential and are well publicized.
HIV testing should always include appropriate pre- and post-test counseling to ensure that both HIV-negative and HIV-positive youth understand their status and the responsibilities they have to themselves and others as a result of that status. Pre- and post-test counseling is particularly important for adolescents. Counseling should be appropriate for the adolescents= social and emotional development, language, culture, and sexual orientation. Effective counselors are sensitive to the great anxiety adolescents feel about HIV testing because of fear of the disease as well as the stigma attached to the disease. As with prevention efforts, the use of peer educators in pre- and post-test counseling has been shown to be effective in communicating critical information to adolescents at what is often a highly emotional point.
The process of testing for HIV allows adolescents to evaluate their own behavior and think of the consequences of that behavior. As a result, there are numerous emotional needs that mush be dealt with by both adolescent and counselor if the effort is to be a success. The involvement of parents and other family members is critical to an HIV-positive youth=s ability to cope with this diagnosis and enter into a continuum of care.
Whether the results are positive or negative, post-test counseling is equally important. For adolescents who test negative, post-test counseling provides an opportunity for further risk reduction. For some, this may be the only opportunity for meaningful prevention education. Positive results require immediate intervention. It is essential that adolescents have an opportunity to talk to knowledgeable persons who can help them understand what their HIV status means and help them deal with issues that may seem overwhelming. HIV-negative youth should have that behavior reinforced.
Adolescents' access to HIV counseling and voluntary testing is often severely limited by a variety of factors. First, many adolescents don't know how to arrange for HIV testing and where to go for such services. Second, adolescents do not have the money or means of transportation necessary to access some forms of counseling and testing. Third, school hours often coincide with the hours of counseling and testing facilities. Finally, parental consent requirements for counseling and voluntary testing also may pose a barrier for many young people -- especially those who know or feel they cannot communicate openly with their parents about this subject.
Taken singly, these barriers can make it difficult for an adolescent to get counseled and tested. Combined, they present a formidable barrier that only a truly determined adolescent can surmount.
To address some of these concerns, HIV counseling and voluntary testing sites should be tailed to be accessible to adolescents. Business hours should complement rather than compete with school schedules and facilities should offer their services at low or no cost to adolescents. This would accommodate adolescents who don't own a car and must use public transportation, are in school, and involved in extra-curricular activities, and have little money or independent health insurance.
A particularly challenging impediment to counseling and testing is the legal requirement in many states for parental consent. Consent is usually necessary for medical care of adolescents under the age of 18. The conditions under which minors may consent to HIV testing vary across states. Ideally, parents, young people and health care providers should all possess the skills and knowledge necessary to maximize a youth=s access to services and support. However, consideration should be given to creating alternative access to counseling and testing where obtaining parental consent is not possible.
Linking HIV-positive adolescents to a system of HIV primary care immediately after a positive diagnosis is vital in order to prevent or delay the onset of HIV-related opportunistic infections, such as Pneumocystis carinii pneumonia (PCP), and to prolong the healthy lives of HIV-positive individuals. An integrated care system, in which medical services are connected to mental health, substance abuse, education, juvenile justice, and social support is necessary to meet the needs to these adolescents. For runaway or homeless youth, housing and nutrition services are also critical. Currently, there are few programs that meet the full range of health care needs for HIV-positive youth. Efforts are plagued by insufficient numbers of primary care physicians and other health care providers trained to work with adolescents, lack of insurance and other financial assistance, a fragmented health care system, and geographically remote facilities. NIH is supporting programs to identify better ways of facilitating access, utilization, and adherence to medical; mental health, and substance abuse treatment by adolescents.
Large numbers of young people are uninsured or underinsured, and the sources for funds to pay for necessary services are limited. If an adolescent is HIV-positive access to insurance often is blocked by insurance policies that exclude individuals with pre-existing medical conditions.
Federal grants for program development such as the Health Resources and Services Administration's Ryan White CARE Act, including Special Programs of National Significance (SPNS), have encouraged care models that consider the special needs of the adolescent population and provide communities with the tools they need to conduct effective outreach programs. Title IV of the Ryan White CARE Act provides support for the development of innovative models that link systems of comprehensive primary/community-based research, medical, and social services for children, adolescents, and families.
"I was infected with HIV by my first partner when I was 16 years old. Now at 20 I have this virus that's taking my life because everything I heard when I was younger was sugar coated. We need more complete information that what we are being given. Even the pamphlets concerning HIV/AIDS prevention are too basic and bland. We need to know real stuff."
-- Ryan, age 20
Besides responding to an HIV-positive adolescent=s physical and mental health needs, linkage with important social services is also an important element to care. Social service providers should be trained to offer referrals for legal assistance, other treatment programs, information about housing, job-training assistance, and help in obtaining health insurance. They also are more able to offer outreach services for adolescents who are homeless, pregnant, or trading sex for food and shelter.
Medicaid provides coverage for a comprehensive set of benefits that includes counseling and testing, prescription drugs, physician visits, inpatient hospital care, substance abuse treatment, home care, and hospice care. Medicaid coverage of children and adolescents has been improved in recent years but many low-income families may not be aware of their eligibility for such benefits. The Federal government and states should examine opportunities to ensure that all Medicaid-eligible HIV positive youth have access to appropriate treatment and care. Medicaid is the largest single payer of direct medical services for people living with AIDS, serving nearly 50 percent of all persons living with AIDS and more than 90 percent of children with AIDS.