Transitioning to Adult Care: “No Walk In The Park”

By Janice McCall | March 8, 2013

Foundation Ambassador Janice McCall at EGPAF headquarters in Washington, D.C.

EGPAF

Foundation Ambassador Janice McCall is one of thousands of young adults who have grown up living with HIV. As part of this population of individuals who have lived their entire childhoods fighting a deadly virus, she has and will continue to experience obstacles many others will never have to face. These include dealing with side effects brought on by harsh but necessary medications; navigating difficult social situations with classmates, significant others, and family; and facing challenges that her HIV status brings to already stressful adult responsibilities, like jobs, insurance, and education. Below, Janice shares one of those experiences – her path to adulthood and discovering how just how complicated being an HIV-positive adult can be.

Being a child growing up with HIV was always a challenge. I had to take loads of medications and I didn’t understand why, I wasn’t allowed to talk to any of my friends about it, and I had to miss school a lot because of doctor’s appointments.

When the time came for me to transition from pediatric into adult care, I knew it wasn’t going to be a walk in the park. I also knew I wasn’t the only one who had to deal with this situation before, so I expected that some support programs would be available for me.

The most challenging experience for me in this transitional process has been finding a way to keep myself on medication as a young adult and student.

HIV medications are very expensive. Luckily, programs like the AIDS Drug Assistance Programs (ADAP) exist. ADAPs are a series of state-based programs primarily funded by the U.S. government to provide HIV treatment medicine for low-income patients. As part of the Ryan White Care Act, ADAPs have been a lifeline for thousands of AIDS patients, currently supporting more than 30 percent of those living with HIV in the U.S.

When I applied for ADAP, my mom walked me through the basics, and with the help of an ADAP representative, I filled out all of the necessary paperwork. The application seemed so simple until my representative began to explain all of the rules I had to follow to stay with the program.

If I had income –  like from working a part-time job –  I could lose my benefits, and I couldn’t go to an out-of-state school because my residency status would change. I was told I had to reapply to ADAP every six months to confirm my needs were  legitimate and I had to remember to call 10 days before my monthly medications ran out to ensure that my prescriptions would be sent to Tallahassee, filled there, and mailed back before I needed them. I am incredibly grateful for the ADAP assistance, but I can completely understand how transitioning youth like me could fall through the cracks and stop taking their medications.

I was young and the stress of it was often too much to bear. Luckily my mom offered to help me and continued to guide me through the process.

Recently I moved to Georgia, and decided to  take over management of my disease. I have chosen to do it by myself so that I can learn and understand what my mom has been dealing with all these years. Luckily for me, the ADAP system in Georgia is less complicated, and I was immediately able to access the healthcare services I need to stay healthy. I am working a part-time job, getting the medicines I need, and feeling proud that I could take control of this part of my life.

Looking back at my experience, I hope that the other HIV-positive young adults who grow up after me don't have to worry and go through the same stresses my peers and I have faced. Part of the reason I am a Foundation Ambassador is to help improve services and support for individuals affected by HIV. We have battled HIV/AIDS for more than 30 years; and with each generation, we learn a little from our past mistakes. It’s my turn to make it a bit easier for the next generation of kids.