Youth and HIV/AIDS 2000:
Spreading the Word about HIV
The National AIDS Hotline (1-800-CDC-INFO) is a free source of answers to basic health questions. It also offers referrals for service and for more in-depth information. Between July 1999 and June 2000, the AIDS Hotline received approximately 143,580 calls from people ages 18-24, and 39,484 calls from people under age 18. A National STD Hotline received thousands more. In addition, the AIDS Hotline's "Classroom Calls" program reached more than 4,000 young people.
The National Prevention Information Network (NPIN) provides in-depth information about HIV/AIDS, STDs, and tuberculosis. Through a toll-free telephone line (1-800-458-5231) and a web site (www.cdcnpin.org), NPIN serves thousands of researchers, educators, health care professionals, parents, and young people each year. NPIN also links the public to other Federal information sources such as the Office of Minority Health Resource Center (www.omhrc.gov, 1-800-444-6472), the AIDS Treatments Information Service (ATIS) (1-800-HIV-0440), and the AIDS Clinical Trial Information Service (ACTIS) (1-800-TRIALS-A) maintained by the National Institutes of Health (NIH).
Between FY1996 and FY2000, CDC funding for domestic HIV prevention increased from $584 million to $695 million. A large portion of this funding supports HIV and AIDS surveillance (see Monitoring the Epidemic), efforts to ensure a safe blood supply, and laboratory research (e.g., on microbicides). This funding is also the major source of Federal financial support for community-based HIV prevention programs. Through cooperative agreements with health departments, CDC supports all 50 states, seven territories, the District of Columbia, Puerto Rico, and six high-incidence cities in conducting a variety of HIV prevention activities. They include voluntary HIV counseling and testing, health education and risk reduction, public information, and community planning.
Monitoring the HIV/AIDS Epidemic
CDC monitors various aspects of the HIV/AIDS epidemic by age group on a continuous basis. A number of surveillance tools are used to track youth and adult risk behavior, HIV tests given at publicly funded sites, reported cases of HIV and AIDS, and AIDS-related deaths. These statistics are stripped of any information that could identify individuals and reported by states and local areas to CDC. CDC compiles the statistics, analyzes them, and makes them available to the public on the worldwide web (www.cdc.gov) and in libraries across the country.
In addition to ongoing surveillance, special studies are conducted by NIH and CDC when there is a need for additional information on particular risk groups. For example, the Young Men's Study gave HIV tests and interviews about risk behavior to thousands of young men who have sex with men in seven large U.S. cities, and then repeated these procedures several years later. This allowed scientists to gage trends in HIV-relevant knowledge, attitudes, and behavior and in HIV infection rates among members of this high-risk group.
Community planning is a process that allows community volunteers and health department staff to set priorities for local HIV prevention activities funded through the cooperative agreements with CDC. During FY 1999, $268 million went to local areas through the cooperative agreements, and Community Planning Groups (CPGs) allocated about $56 million to local organizations that provide community-based prevention programs to youth.
The 1996 ONAP report recommended greater youth involvement in the CPGs. The National Association of State and Territorial AIDS Directors was funded by CDC to compile a case study of CPG experiences with youth involvement. Several other national organizations also have been funded to increase youth involvement.
CDC also awards funding directly to some local organizations -- mainly those that provide prevention services to hard-hit racial and ethnic minorities. Eighty-four of these grantees serve youth, and many of them serve other age groups too.
In addition, CDC receives and distributes about $45 million per year for HIV prevention activities in secondary schools, post-secondary institutions, and settings that serve youth in high-risk situations. The funding goes to education agencies in states and large cities and to national non-governmental organizations. CDC strongly recommends that HIV prevention be undertaken in the context of coordinated school health programs; more than 180,000 teachers each year are trained in the administration of such programs. This funding also helps grantees implement sound school HIV prevention policies, develop and disseminate HIV prevention curricula, and evaluate these prevention activities. Grantees are directed to work with the most at-risk populations.
The CDC's "Research to Classroom" project identifies curricula that have good evidence of reducing sexual risk behaviors in either classroom or community settings. In the last four years, new curricula have met the stringent scientific criteria CDC uses to assess prevention program effectiveness.
At this point, most students are learning at least something about HIV in school:
None of the curricula on the current list of programs that work uses an "abstinence-only" approach, but the 1996 welfare legislation made available a total of $250 million over five years to support programs that have " . . . as [their] exclusive purpose, teaching the social, psychological, and health gains to be realized by abstaining from sexual activity." As previously noted, the effective programs identified to date provide information about safer sex, condoms, and contraceptives, in addition to encouraging abstinence.
Programs that put an even greater emphasis on abstinence or delay of sexual debut deserve further scientific study, and such studies are being supported by NIH, ASPE, CDC, and many states. However, it is a matter of grave concern that there is such a large incentive to adopt unproven abstinence-only approaches.
As important as effective school-based HIV prevention education is, it must be part of a mix that includes community-based programs. They enable youth who have dropped out of school or who attend infrequently to receive life-saving information through trusted channels, in convenient places, and in formats that have been tailored to their diverse needs.
We do not know enough about the extent and range of community-based services for high-risk youth. Many of these services are sponsored by private sector entities or funded by block grants that do not require reports back to the government about how funds were used. However, there is widespread agreement among those who work with and study young people that many high-risk youth are not being served.
Community-based programs often respond to the reality that HIV risk behavior does not occur in a vacuum. Young people have other pressing concerns (e.g., poverty, lack of adult mentoring, sexual abuse, sexual identity issues and drug and alcohol dependency) that must be addressed if they are to avoid unsafe sex.
For a number of reasons, drug and alcohol prevention and treatment are essential elements in the array of services needed to prevent HIV infection. Sharing equipment used to inject drugs is one of the leading sources of exposure to the HIV virus. Addiction can result in exchanging sex for drugs, a practice that carries major HIV risks. Again and again, youth who drink heavily or use illegal drugs have been shown to engage in more risky sexual behavior than other young people. Even occasional substance abuse can impair judgment, making a young person more susceptible to pressure to engage in unwanted or unprotected sex. Fortunately, communication and refusal skills acquired in a substance abuse prevention program can help a young person resist sexual pressure as well as pressure to take drugs.
In FY2000, the Substance Abuse and Mental Health Services Administration (SAMHSA) awarded $1.6 billion to states through a Federal block grant program. This Federal funding represents about half of all public funding for substance abuse treatment and prevention programs. Funding for the block grant program has increased from just over $1.2 billion since the 1996 ONAP report.
States with 10 or more cases of AIDS per 100,000 residents are required to "set aside" 5% of the funds from their Substance Abuse Prevention and Treatment (SAPT) block grants for early intervention services related to HIV. These services must encourage voluntary HIV counseling and testing among substance abusers and their sex partners, and provide clinical services to those who are HIV-infected.
In addition, the states that use part of their SAPT block grants for treatment for injection drug users (IDUs) are required to provide outreach services to IDUs. Designed to encourage entry into treatment, the outreach services are often based on indigenous leader and health education models. Fifty-seven percent of the states that provide IDU treatment recently reported that their outreach services target high-risk youth as well as adult populations.
Finally, SAMSHA funds a High Risk Youth Program which is administered from the agency's national headquarters. This nationwide program develops and documents approaches to preventing drug and alcohol use among young people in high-risk environments, and disseminates the successful approaches. Examples include:
In 1999, the Minority AIDS Initiative significantly increased SAMHSA's funding for substance abuse prevention and treatment services for youth of color. But despite these and other initiatives by government and the private sector, the shortfall of youth-targeted, community-based services remains acute. As the last ONAP report emphasized, we need more widespread sharing of information about programs that work, more financial support for HIV prevention and related prevention education, more support for substance abuse and STD treatment programs, widespread replication of existing models with evidence of effectiveness, and more good new HIV prevention ideas.
Over the last few years, there has been some Federal support for new types of HIV prevention programs. Promising new approaches include enhancing parent-teen communication, youth development and service learning programs, "safer schools" initiatives, multi-level interventions (e.g., programs that target students, their parents, and their teachers), and social marketing campaigns.
Social marketing -- the use of media campaigns and other marketing strategies to influence behaviors and attitudes -- has received a lot of attention because it has the potential to reach so many young people. For example:
In some of the newest social marketing work, campaigns are being designed to encourage high-risk individuals to get voluntary HIV counseling and testing, the first step on the road to adequate care.
Since 1996, Federal agencies have taken several other important steps to expand HIV counseling and testing for high-risk youth. For example, CDC is developing guidelines to help HIV test counselors respond to the unique needs of adolescents and young adults. The Food and Drug Administration (FDA) and CDC are working together to speed the approval of reliable HIV tests that provide immediate results, eliminating the time delay that has resulted in a failure to return for results. CDC also offers a course on youth-centered, client-focused prevention counseling.
Such activities should help young people learn their HIV status so that they can enter care, but the Federal resources devoted to this effort are still meager compared to the number of youth at risk of HIV infection. As the following section on care and treatment makes clear, much more remains to be done to provide developmentally appropriate, culturally competent HIV counseling and testing to all the young people who have engaged in HIV risk behaviors.
Early medical care and other supportive services are making it possible for some HIV-positive young people to live longer and to enjoy greater quality of life. Treating problems before they become serious may also reduce overall medical costs.
The Federal government provides care and support for young people living with HIV and AIDS through HIV-specific programs and health insurance coverage. Between 1996-1999, discretionary Federal spending on HIV-specific care and support programs increased from about $1.4 billion to $2.2 billion. In addition, each year almost one million 15-20 year olds receive Early Periodic Screening, Diagnosis and Treatment (EPSDT) exams through Medicaid. Finally, a new Federal initiative, the Children's Health Insurance Program, has made more adolescents eligible for health insurance coverage.
Despite this considerable investment, there are relatively few HIV-positive youth in care. In part, this is because many HIV-positive youth do not know that they are infected. Other barriers to health care access include remaining gaps in health insurance coverage, a shortage of health care providers with expertise in both HIV and adolescent medicine, and confidentiality concerns.
The Ryan White CARE Act (RWCA) is the largest discretionary Federal program dedicated to HIV care and treatment. RWCA is administered by HRSA. Across the country, this program supports a wide range of community-based services including primary and home health care, access to medications, case management, mental health services, dental care, nutritional services, and linkage to substance abuse treatment and housing assistance. As the number of people requiring care has increased, RWCA has grown from a $220.5 million program when it began in 1991 to a $1.6 billion program today. Youth are eligible for all RWCA programs, which are targeted to specific populations on the basis of local needs assessments. Approximately 7% of the 500,000 clients served in Titles I, II, and III of RWCA (provisions authorizing grants to high-incidence cities, to states and territories, and to primary healthcare systems and community-based organizations) are young people between 13 and 24 years of age.
In addition, Title IV of RWCA funds sites to reach out to children, youth, women, and families and to provide them with comprehensive care. There are Title IV grantees in 27 states, Puerto Rico and the District of Columbia. From 1995 to 1997 alone, the number of young people ages 13-24 served by Title IV increased by 225%. Title IV projects have been most successful at reaching young women, one of the fastest-growing groups of HIV-infected individuals in the country.
The research and development arm of RCWA is its Special Projects of National Significance [SPNS]. Young people were the sole focus of ten SPNS awards made in 1994. HRSA awarded $2.7 million in three-year grants to community-based organizations to develop and pilot-test innovative models of HIV care for adolescents and young adults. The projects explored various methods of outreach to HIV-positive youth and ways to increase early entry into primary care and support. In 1998, the findings of this first generation of adolescent demonstration projects were published. Some of the findings were that:
One lesson from the first-generation SPNS projects was that youth infected through perinatal transmission have very different needs and concerns than those infected through sexual or drug use behaviors. Strategies for tailoring care for each of these two subgroups are among the topics being explored in three new adolescent SPNS projects that are still underway. To put SPNS findings into practice, HRSA established a $2 million Adolescent Initiative within Title IV. In addition, special training is offered to staff of programs funded under the other provisions of RWCA.
Youth projects are still eligible to apply for SPNS grants, but there is no longer a SPNS component dedicated to adolescents and young people. The Adolescent Initiative, which represents a very small fraction of Federal AIDS care dollars, is now the only ongoing RWCA program specifically for youth. It has made small grants to youth programs in just four cities (Boston, Chicago, New Orleans, and San Francisco) and Puerto Rico.
Overall, the number of programs that integrate primary care, specialized HIV medical treatment, mental health services, case management, and other supportive services into 1-stop shops has grown somewhat since the 1996 report, as has the number of youth enrolled. But there is a still a widespread need for replication of the service models that have succeeded in getting young people into life-saving care and keeping them there. Current treatments are extremely expensive and have demanding regimens. They can cause severe and sometimes disfiguring side effects, require intensive medical monitoring, and can stop working over time. All of these factors are of particular concern for youth, and services for young people should take these concerns into account. The demand for tailored care for young people will increase as treatments for HIV extend life and medical treatment becomes more complex.
Medical care costs incurred by some HIV-infected youth are covered by Medicaid and other Federal programs that help low-income people cover general medical expenses. Since the 1996 report, significant progress has been made in extending health insurance to adolescents:
Although Medicaid and SCHIP programs have helped many teens, health insurance for young adults is still sorely lacking. SCHIP and other public health insurance programs typically limit coverage to youth under age 19. This constitutes a major gap in coverage.
Beyond medical care, stable housing is one of the most important parts of the safety net for persons living with HIV and AIDS and their families. Youth who are homeless or who run away from home are at greater behavioral risk of HIV infection. Youth who are infected with HIV are more likely to be able to follow complex treatment regimens if they have a reliable address where they can be reached by care providers, a safe place to keep medications, refrigeration for drugs that require it, and other necessities that many of us take for granted.
HOPWA Special Projects of National Significance are able to provide services beyond housing to infected and at-risk youth. For example, the Center for Children and Families in New York City sponsors aggressive street outreach, specialized youth counseling, life skills training and other services at a drop-in center and a transitional housing program. The Center also provides technical support to over 100 local agencies and nonprofits that serve youth.
The Federal government supports AIDS research in a wide range of scientific areas. They include natural history, epidemiology, behavioral science, basic biomedical sciences, therapeutics and vaccine discovery, development and testing, health services, and social science. This portfolio resides in numerous Federal agencies. Within the Department of Health and Human Services, NIH, CDC, HRSA, and the Agency for Healthcare Research and Quality support most of the research; the Department of Veterans Affairs and the Department of Defense also contribute to the AIDS research effort. These agencies have internal research planning processes and bring in outside experts to help set research planning priorities. The agencies use scientific conferences and journals and other mechanisms to disseminate research findings to a variety of audiences (e.g., scientists, policy makers, local service providers, and the general public).
According to the Office on Management and Budget, Federal spending on AIDS research programs has grown from approximately $1.5 billion in FY 1996 to $2.1 billion in FY 2000. Basic biomedical research (e.g., the studies that led to the identification of the HIV virus and an understanding of how it destroys the immune system) represents about half of this research portfolio. In most cases, basic biomedical research is not specific to young people, but it is critical to the development and evaluation of preventive measures and medical treatments from which young people stand to benefit. Although we acknowledge the central importance of basic biomedical research, it will not be described here. Instead, this report will highlight some prevention and treatment research that focuses on young people directly.
The NIH supports the majority of Federally-sponsored AIDS research and, in FY2000, targeted approximately $60 million specifically to HIV/AIDS research with adolescents. Youth-focused HIV research is describing the extent of the HIV epidemic among young people, identifying effective HIV prevention approaches, revealing the effects of HIV disease in young people, and improving treatment regimens. In addition, NIH supports a large program of AIDS research with other groups (e.g., racial and ethnic minorities and pediatric populations) and on vaccine candidates and new treatments, and there are some young participants in this research. The agency also supports studies of adolescent sexual behavior that have direct implications for HIV research and practice.
Conducting the research necessary to further understanding, prevention, and treatment of HIV and AIDS in adolescents and young adults is an explicit priority for NIH and other Federal agencies. Funding for research on youth and AIDS has increased over the last four years, and we have learned a great deal, but we have not met all of the research challenges identified in the 1996 ONAP report (see Attachment B). Additional funding is needed to take advantage of research opportunities and to fill in knowledge gaps.
Over 20 adolescent-specific studies funded by NIH are currently examining factors that lead to HIV risk behaviors. In addition, more than two dozen NIH-funded studies are developing and evaluating social and behavioral interventions to reduce HIV infections among youth. For example:
Several institutes at NIH co-support the NIAID-sponsored HIV Prevention Trials Network. It conducts domestic and international research on promising biomedical and behavioral strategies for preventing HIV transmission among adult, pediatric and adolescent populations. Among the types of interventions studied in this network are behavioral interventions, vaccines, and physical and chemical barriers (e.g., microbicides). Additional studies of these types of interventions are supported through NIH-sponsored programs elsewhere in the agency. The successful development of these HIV prevention tools will be invaluable to young people.
NIH advisory groups have determined that more research is needed to address HIV prevention-relevant scientific questions such as:
CDC and SAMHSA also conduct HIV/AIDS prevention research. Among their current projects targeting youth are:
NIH funds the majority of the research relevant to treatment for HIV and AIDS. The agency supports several research networks that conduct HIV/AIDS treatment research involving young participants, including the Pediatric AIDS Clinical Trials Group (PACTG), the Adult AIDS Clinical Trials Group (AACTG), the Community Programs for Clinical Research on AIDS (CPCRA), and the Adolescent Medicine HIV/AIDS Research Network (AMHARN). These networks evaluate antiretroviral treatments, medications for HIV-related opportunistic infections and malignancies, and medication regimens.
All the networks have begun to address the issues of simplifying treatment regimens for adolescents and recruiting and retaining youth in clinical trials. Recruiting young people into clinical trials remains difficult, and the concerns that young people have about participation may not be sufficiently understood.
Institutional review boards (IRBs) are standing committees at universities, hospitals, and other institutions that conduct research. IRBs examine research proposals to ensure that issues such as participant safety, confidentiality, and informed consent have been adequately addressed. IRBs must follow Federal regulations (promulgated by NIH) and state and local laws that protect minors as a special population. However, the potential value of information about young people should also be heavily weighted in IRB deliberations.
In 1994, the AMHARN was established by NIH to create an infrastructure for AIDS research specifically targeting adolescents ages 13 to 19. AMHARN's objectives are to: characterize the natural history of HIV in adolescents; study basic science questions about the susceptibility, infectivity, and transmissibility of HIV in adolescents; produce clinical management guidelines for adolescent HIV infection; and provide youth access to clinical trials. Two major Network initiatives are Project REACH and Project TREAT.
HRSA (see the description of SPNS in the section on HIV Medical Care and Supportive Services) and CDC also conduct treatment-relevant research. Two large ongoing studies at CDC focus on children who were infected perinatally and are now adolescents. A new CDC study of HIV-infected adolescents will examine the continuity of care provided by HIV specialists, adherence to medical regimens, and strategies for preventing further HIV transmission.
The HIV/AIDS epidemic among our nation's youth demands increased scientific attention and a more efficient two-way information pipeline between scientists and those on the front lines of the battle against AIDS. Collaborative ground has been broken. Scientists and service providers are research partners in many studies around the country, and some mechanisms for dissemination of scientific information are in place. However, optimal information exchange will require new strategies for collaboration among Federal agencies and between researchers and practitioners.