Feature Articles: HIV Infection in Women,
Adolescents, and Children

Mobeen H. Rathore, M.D. Guest Editor
Associate Professor and Assistant Chairman in the Department of Pediatrics,
University of Florida Health Science Center / Jacksonville and
Director, Rainbow Center For Women, Adolescents, Children and Families

As the HIV epidemic enters its third decade at the turn of the millennium, we have come a long way. The changes are evident in the definition of AIDS, the identification of HIV and the discovery of the first antiretroviral, to the development of highly active antiretroviral therapy (HAART). Strategies help prevent perinatal transmission of HIV, actually decreasing perinatal transmission by more than 80%, and we have gone from an untreatable disease to a chronic manageable disease, much like hypertension and diabetes. Although we have witnessed many successes, there are some less fulfilling facts. HIV continues to infect more and more individuals and disproportionately affects minorities, women and the young. These are the same populations who are often disenfranchised, and even under the best of circumstances have many barriers to receiving services. This disease is frequently affecting families that are poor, single parent, with the head of the household a minority female, who is usually an adolescent.

Although now a manageable chronic disease, HIV does not fit into any of the available paradigms of chronic diseases. The disease often affects the entire family. At the Rainbow Center, we care for HIV affected families. We have families where mother, father and sometimes more than one child is infected, and other families affecting three generations: child, mother, and grandmother. Infected individuals usually have little or no support since they frequently prefer not to disclose their illness due to the stigma attached and fear of withdrawal by family and friends. These problems further complicate issues related to contacts by healthcare providers and successful adherence to therapy.

All of these difficulties require a comprehensive, multidisciplinary, psychosocial / medical approach to the disease by a caring and committed group of providers who are willing to go the extra mile, to be available as support for the affected individuals and the resource for families. In addition, the providers must remain updated to the latest developments in HIV and programs must be able to provide cutting edge medicine both approved and investigational. The Rainbow Center for Women, Adolescents, Children and Families aims to provide such a program.

The Rainbow Center is a unique program that provides family centered care for HIV. It is the only program in Florida and a handful across the nation that provide care for the whole familly at the same time and same place. The program's vision states: "Let no individual or families' potential be limited by disease."

The program's mission is:

1. To enhance the quality of life by providing compassionate, comprehensive care for children, adults, adolescents and families affected by HIV;
2. To increase the awareness and understanding of HIV; and
3. To decrease the transmission of HIV.

The dedicated group of individuals providing services includes: Ana Alvarez, M.D., Debra Barber, Sherry Buchman, Erin Buckley, Sharon Cusic, Barbara Doyle, Bonita Drayton, Michelle Eagle, Margarita Gomez, M.D., Pam Juba, M.D., Nancie Kaczorowski, Kathy Letro, Amy Luebke, Saniyyah Mahmoudi, Nizar Maraqa, M.D., Jeannie Marini, Cheryl Martin, Mandy Matti, Marilyn Mayse, Samir Midani, M.D., Kelly Minor, Sue Osborne, Pam Patrick, Shella Popp, Mobeen H. Rathore, M.D., Pat Robinson, Debra Rozensky, Melissa Scites, Laura Singleton, Deborah Standley, Felicia Wash, and Olivia Williams.

We hope to continue to provide services to our patients and families with the same passion and concern for as long as needed.

In this issue of Jacksonville Medicine several of the providers at the Rainbow Center address the various aspects of family centered care.