Youth and HIV/AIDS 2000:
A New American Agenda

Attachment A: Acknowledgements
Attachment B: Recommendations from Youth & HIV/AIDS: An American Agenda March, 1996
Attachment C: Glossary

Attachment A
Acknowledgements

In considering a course of action, ONAP sought advice from adult AIDS experts inside and outside of government, and from young people themselves. An advisory group was invited to provide guidance; we appreciate their contributions and have listed their names and affiliations at the time of initial group meetings below.

In addition, early in the process of writing this report, a focus group was conducted with HIV-positive young people to insure inclusion of their critically important point of view. For reasons of confidentiality, the young people who participated in the focus group are not listed here, but we are deeply grateful for their time and frankness.

Finally, we would like to acknowledge the helpful comments on a draft of this report that were provided by all the Federal agencies and offices the report mentions and from a number of others. ONAP particularly appreciates the support provided for development of the report from HRSA and the AIDS Alliance for Children, Youth & Families.

Rusty Bennett HUD/ONAP Washington, DC	Miguel Bustos Office of Mrs. Gore Washington, DC	Margaret Campbell Wayne Wright Resource Center JRI Health Boston MA	Patricia Flynn, MD Memphis HIV Family Partnership Memphis, TN
Donna C. Futterman, MD Montefiore Medical Center Bronx, NY	Melvin Harrison Navajo AIDS Network Chinle, AZ	Khurram Hassan Grady Pediatric-Adolescent HIV/AIDS Program Atlanta, GA	Joan Holloway HRSA Rockville, MD
Joyce Hunter HIV Center for Clinical and Behavior Studies New York, NY	Loretta S. Jemmott, Ph.D. University of Pennsylvania Philadelphia, PA	Michele D. Kipke, Ph.D. University of Southern Calif. School of Medicine/National Research Council Washington, DC	Maria Lago HRSA Rockville, MD
Chad Martin CDC Atlanta, GA	Jaime Martinez, MD Cook County Hospital Chicago, IL	Cassandra McFerson Metro Teen AIDS Washington, DC	Hugh McGowan Consultant to HRSA Rockville, MD
M. Valerie Mills, Ph.D. SAMHSA Rockville, MD	Daniel C. Montoya PACHA Washington, DC	Matthew Murguia OMH, DHHS Rockville, MD	Angela Powell HRSA Rockville, MD
Ivonne Reyes Teen Outreach Worker, University of Miami Miami, FL	Audrey Smith Rogers, PhD, MPH NIH/NICHD Bethesda, MD	Bret Rudy, MD Children's Hospital of Philadelphia Philadelphia, PA	Jane Sanville Office of National Drug Control Policy Washington, DC
Sean Sasser PACHA/Health Initiatives for Youth San Francisco, CA	Margaret Scarlett, DDS CDC/DHHS Washington, DC	Richard Schulman HRSA Rockville, MD	Denise Stokes PACHA Stockbridge, GA
Todd Summers ONAP Washington, DC	Steven Tierney, EdD Dimock Community Health Center Roxbury, MA	Alex T. Torrez Bienestar Human Services Los Angeles, CA	Ofelia Virtucio Asian and Pacific Islander Wellness Center San Francisco, CA

Attachment B
Recommendations from Youth & HIV/AIDS: An American Agenda March, 1996

Action Requiring Cooperation From All Levels of Society

• Young people, parents, schools, and communities must be integral partners in developing, delivering, and evaluating HIV prevention approaches for adolescents.

• Innovative, creative prevention efforts aimed at young people must be encouraged, adequately funded, and evaluated, and -- when found to be effective -- broadly disseminated.

• Comprehensive HIV/AIDS education -- as part of comprehensive health education -- should be available to all young people in all fifty states and U.S. territories.

• Routine counseling and voluntary HIV testing should be made more accessible, developmentally appropriate, and affordable to young people.

• HIV-positive adolescents should be linked to a continuum of health care and support services that will extend their life span and provide them with the information and skills they need to reduce the likelihood of further transmission.

• Adolescent-specific biomedical and behavioral research should be increased to enhance our knowledge of the progression of HIV disease in adolescents and of the effectiveness of HIV prevention approaches and of HIV/AIDS treatments.

The Federal Role

• DHHS should create a forum of young people who are infected or affected by HIV as well as their parents, advocates, and providers to work with Federal officials to help identify and articulate the needs of adolescents in fashioning Federal responses to HIV and AIDS.

• HRSA should encourage the inclusion of young people and their advocates on AIDS care planning councils to help identify local needs and ways to target Federal funds to help meet the distinct developmental and comprehensive care needs of youth.

• CDC should encourage the inclusion of young people and their advocates in AIDS prevention planning councils to provide their unique perspective of the needs of youth in prevention efforts.

• The Federal government should continue to help the nation's schools and other youth serving agencies implement comprehensive programs to prevent the spread of HIV among young people.

• NIH and the Food and Drug Administration should continue to encourage the enrollment of adolescents in government and industry sponsored HIV/AIDS clinical trials.

• The Public Health Service should work with the researchers, clinicians, medical community, and patients to develop appropriate clinical practice guidelines for adolescents with HIV/AIDS.

• In releasing data from clinical trials, NIH and FDA should include specific data related to adolescents. In those cases where the number of adolescents participating in a trial is too small, anecdotal data should be released on a limited basis to allow clinicians an opportunity to begin building a base of information for their use in treatment.

• The Federal government should support expanded access to testing and counseling for young people. The CDC guidelines for testing and counseling should address the special needs of adolescents, such as developmental issues, processes for consent, confidentiality, and payment for services. As part of a grant application for counseling and testing funding, states should demonstrate the availability of testing and counseling services for young people.

• SAMHSA, CDC, and HRSA should collaborate on substance abuse treatment and prevention strategies affecting adolescents to ensure a coordinated effort.

Attachment C
Glossary

ACTG	Adult AIDS Clinical Trial Group, sponsored by NIH
AIDS	Acquired Immunodeficiency Syndrome
AMHARN	Adolescent Medicine HIV/AIDS Research Network, sponsored by NIH
ASPE	Assistant Secretary for Planning and Evaluation, DHHS
CDC	Centers for Disease Control and Prevention
CPCRA	Community Programs for Clinical Research on AIDS, sponsored by NIH
CPG	HIV/AIDS Prevention Community Planning Group
Determinants	Factors that have been shown to predict a certain outcome, for example, a disease or risk behavior
DHHS	Department of Health and Human Services
EPDSDT	Early and Periodic Developmental Screening, Diagnosis, and Treatment
FDA	Food and Drug Administration
HIV	Human Immunodeficiency Virus -- the virus that causes AIDS
HOPWA	Housing Opportunities for Persons with AIDS
HRSA	Health Resources and Services Administration
HUD	Housing and Urban Development
IDU	Injection drug user
IRB	Institutional review board
Job Corps	Federal job training program for economically disadvantaged youth
Microbicide	A topical agent that kills virus, but not necessarily sperm
NIH	National Institutes of Health
OMH	Office of Minority Health, DHHS
ONAP	White House Office on National AIDS Policy
PACTG	Pediatric and Adolescent Clinical Trials Group, sponsored by NIH
Regimen	A recommended schedule and dosage of a drug or therapeutic agent or activity
RWCA	Ryan White CARE (Comprehensive AIDS Resources Emergency) Act
SAMHSA	Substance Abuse and Mental Health Services Administration
SCHIP	State Children's Health Insurance Program
SPNS	Special Projects of National Significance
STD	Sexually transmitted disease
Surveillance	The regular monitoring of cases of a specific disease or health event
YRBS	Youth Risk Behavior Surveillance