By Andres F. Camacho-Gonzalez, M.D., and Sophia A. Hussen, M.D.
At a time when HIV rates are stabilizing in most population sub-groups, the prevalence of HIV in youth is steadily increasing in the United States.
This trend is explained in part by increased survival of perinatally infected youth, but it is primarily attributable to increases in incident infections during adolescence. In fact, adolescents and young adults between the ages of 13 and 24 now make up the fastest-growing group of HIV-positive individuals in the country. Georgia is also ranked 4th in the nation for new HIV cases, and, despite extensive local prevention efforts, rates of new HIV cases are essentially unchanged since 2005.
Youth living with HIV (YLHIV) face a host of complex medical and psychosocial challenges that require intense and holistic support in order to optimize care. Understandably, there is concern that the combination of socioeconomic disadvantage and multiple types of stigma, superimposed on the developmental and physical turbulence of normal adolescencent development, may leave YLHIV at high risk for loss to medical follow- up, poor antiretroviral (ARV) adherence and generally suboptimal health outcomes.
Adolescents in general are known to have poor utilization of healthcare and prevention services. Despite national recommendations, it has been estimated that only 38 percent of adolescents receive preventive visits, and of those, only 40 percent spend time alone with their physicians receiving counseling on topics such as sexuality, mental health and substance use. Many adolescents rely on emergency departments for primary care, and they are more likely to be uninsured than any other age group.
In addition to the importance of medical care for the health of individual YLHIV, the ability of YLHIV to cope successfully and adhere to their medicines has additional public health implications for prevention of secondary transmission. As increasing numbers of YLHIV enter the healthcare system, it is imperative that HIV care is situated within relevant developmental and cultural contexts to optimize clinical, personal and public health outcomes.
The Ponce Family and Youth Clinic (PFYC) is the pediatric and adolescent-focused clinic within the larger Grady Infectious Disease Program (IDP). At the PFYC, we deal with these epidemiological realities and public health imperatives on a day-to-day basis. Currently the PFYC serves a total of 588 children and adolescent ages 0-24, 47 percent (279) of whom are between 16-24 years of age. In recent years, we have seen a rapid influx of newly infected adolescents into our clinic—the majority of whom are young men who have acquired HIV through sexual contact.
Meeting these young men and hearing their stories is often heartbreaking, as they frequently relate tales of poverty, victimization and bullying, and other childhood traumas. In spite of these obstacles, however, and notwithstanding the toll that their new diagnosis takes on them, many of these patients also display remarkable resilience and, with the support of our multidisciplinary staff, achieve optimal clinical outcomes as well as their own developmental goals of transitioning to adulthood.
One example of such a story is that of “Andre,†a 22 year old who came from a troubled childhood and an abusive household. At school, he was bullied and socially isolated, mainly for being overweight. Andre’s family rejected him when they found out about his sexuality, forcing him into transient and often unstable housing situations. He was finally able to break the cycle of abuse and housing insecurity when he moved to Atlanta to live with a friend.
Soon after his move, however, he started to feel ill and was ultimately diagnosed with HIV at the age of 20. He was devastated by this news and fell into what he described as a state of deep depression, until he came to the PFYC for his first medical appointment.
When he met with his medical provider for the first time, she taught him about HIV and helped him to understand immediately that HIV was a manageable, chronic condition. In addition to following up with her on a regular basis, he also immersed himself in other parts of the clinic support system—attending the weekly youth support groups on Tuesdays and forming close personal bonds with his psychologist and social worker. Referring to specific members of his medical care team and also to the clinic personnel in general, Andre, like many of our patients, describes the PFYC as a “family,†where he feels comfortable, supported and accepted.
Due in part to the support and self-esteem he gets from these interactions, Andre always comes to his appointments reliably. He takes great pride in his improving health and perfect adherence—stating that he has never once missed a dose of his prescribed HIV medicines. He has disclosed his status to some friends with mostly positive responses. He is also working full-time and hoping to complete his GED within the year.
Andre’s story is representative of many in our clinic and shows that in spite of seemingly tough odds, many of our patients are quite resilient and are able to achieve excellent medical outcomes in the setting of the multidisciplinary support provided at the PFYC.
Our services are diverse and designed to help these vulnerable youth cope with a range of challenges that they might encounter. Our medical staff includes five physicians and two physicians’ assistants, all of whom are highly experienced in, and passionate about, providing quality care for YLHIV. Additionally, the PFYC has three social workers dedicated exclusively to the pediatric/adolescent population, and each new patient is assigned to a social worker when they enroll in the clinic—providing a valuable system for keeping track of patients and getting them back into care if they miss an appointment, as well as helping them to navigate logistical challenges in their lives more generally.
We also have a pediatric psychologist who conducts individual therapy as well as group sessions for our HIV- positive adolescents. Other specialized services include a pediatric nutrition expert, as well as the range of other services available to patients in the IDP clinic more generally. With so many different professionals within the PFYC being involved in each young person’s care, it becomes relatively difficult for a patient to fall through the cracks and become lost to care.
Although many of our patients do well, there is also a lot that remains to be done—YLHIV still face considerable challenges from both a medical and a psychological standpoint, and there is a lot that is unknown about this population, as most HIV research has been conducted exclusively in older adult populations. To address these gaps in our collective knowledge, the medical providers at the PFYC are also involved in a variety of research endeavors designed to improve clinical care, outcomes and basic scientific understanding of pediatric and adolescent HIV.
The range of interests of our physician-researchers is broad and includes basic research focused on natural placental mechanisms of protection for prevention of mother-to-child transmission, immunology research with primates, clinical and translational research on vitamin D levels in HIV infection, neurobehavioral outcomes of HIV- infected children and adolescents and socio-behavioral research focused on engagement in care.
The need to improve engagement in HIV care for youth is one of the most pressing issues in this population. Epidemiologic and anecdotal evidence suggest that although adolescents and young adults are coming to the PFYC in record numbers, there remain many undiagnosed cases in the community who could benefit from our care. As a result, one of our major initiatives right now is to create community and academic partnerships to improve linkage to HIV care at the PFYC for youth who are newly diagnosed with HIV and to create programs within our clinic to keep youth engaged in care once they are enrolled.
The Metropolitan Atlanta Community Adolescent Rapid Testing Initiative (MACARTI) is a multidisciplinary outreach project at the PFYC aiming to decrease the time to first medical visit, improve HIV care parameters and increase the retention rate among those patients who test positive. This project, created with the participation of our current patients, uses a combination of venue testing (at bars and nightclubs, public parks, libraries, malls, community centers, health care centers and sports venues), motivational interviewing techniques and intensive case management support at the time of testing and throughout their HIV care, helping us decrease the average time to first medical visit to two weeks after diagnosis and increase our retention rates to at least 80 percent.
Other retention initiatives specifically tailored to serve our youth include the development of a mobile phone application to remind patients to take their medications and come to medical visits, to provide another platform for learning about HIV and to allow patients to interact with members of the medical care team. We hope that by taking advantage of mobile technologies, we will expand our services beyond the clinic borders—an essential component of providing care in adolescent HIV infection.
Providing care for the unique youth population at the PFYC is both challenging and rewarding. Unfortunately, epidemiologic trends suggest that our clinic population will continue to grow in the years to come. It is our hope that by continuing to provide high quality, multi- disciplinary youth-focused care, and by developing novel ways of approaching and decreasing health disparities among youth, we can continue to improve the lives of YLHIV in Atlanta.
Andres F. Camacho-Gonzalez, M.D. is an Assistant Professor of Pediatrics at Emory University. He completed his medical training at the Universidad del Rosario in Bogota-Colombia and came to the United States in 2005 where he completed a pediatric residency in Albert Einstein Medical Center in Philadelphia. He completed a Fellowship in Infectious Diseases and a Masters in Clinical Science Research at Emory University. He provides care to HIV infected children, adolescent and young adults at the Ponce Family and Youth Clinic.
Sophia A. Hussen, M.D. is an assistant professor at Emory with a dual appointment in the School of Public Health and the School of Medicine. Her clinical and research interests focus on the treatment and prevention of HIV among adolescents and young adults. In her research, she seeks to bridge sociobehavioral and biomedical approaches to improving HIV-related outcomes for racial/ethnic and sexual minority youth. Dr. Hussen also has an interest in studying the HIV epidemic in Ethiopia.
