The Rewards of Working with Adolescents with HIV
August 1, 2012
In 2011, 25% of people newly diagnosed with HIV in Louisiana were 25 years of age or younger. This is reflective of the epidemiology of the disease nationally with the CDC estimating in 2009 that 39% of new cases occurred in patients 29 years of age or less. The period of adolescence is a time when behaviors adolescents are exploring as they try to “find themselves” really increase their risk for HIV acquisition, such as sexuality and drug experimentation.
In early 2006, a few months after Hurricane Katrina had devastated New Orleans, I started a clinic at Children’s Hospital seeing patients exposed to or infected with HIV up to 25 years of age. As an adult and pediatric HIV specialist, I have been able to offer a family oriented clinic to women with their exposed or infected children, seeing the two clients together to increase the access to care for the women. Also in the clinic we started seeing many newly diagnosed adolescents and young adults. Over the past six years, we have had approximately 125-150 new patients with about 100 currently following with us in clinic. The behaviorally infected adolescents have ranged from 12 years of age and up with the average age at diagnosis around 17-18. Over 90% of our young adults are African-American and many come to us from broken homes or are living under the federal poverty level.
We offer an environment that is very welcoming to the young adults. Located in the ambulatory center of the Children’s Hospital of New Orleans, our clinics occur at the same time as many other specialty clinics. I also see non-HIV-infected patients at this clinic so the clients do not worry about going to a designated HIV clinic since many adolescents fear the stigma associated with the disease. An LPN who works as a Medical Case Manager with our local Part D funded agency (the FACES Program) is central to our initial linkage into the clinic and the retention in care. Both the case manager and I give our email addresses and cell phone numbers to our patients and stress that they can contact us at any time when they need us; many of the patients text us both throughout the day with questions. We stress the need for the adolescents and young adults to make and keep their scheduled appointments as a responsibility they will need as they transition to a more adult oriented clinic setting. We decided not to allow walk-ins to the clinic but they can call us the day before and whenever possible we try to fit them into the schedule.
Both Shelia Johnson, the medical case manager mentioned above, and I find the work we do with the young adults very rewarding. We have watched them mature into clients that can make their appointments, arrange their transportation, disclose their status to others, and make sure that they obtain their medications to strive for 100% adherence to their treatment regimens. We try to treat the young adults as exactly that, young adults, and not just as older pediatric patients, and we work with them to develop life skills as they reach their mid-20’s. We feel this respectful approach has worked to keep the vast majority of our clients engaged in their care and wellbeing. Although this population can be frustrating and contrary at times, watching them develop maturity and develop life skills is a very rewarding experience.