Linda Jones, Treatment Adherence Counselor at Project ARK

Linda Jones describes herself as a person who wears many hats. She is a 47-year-old mother of three living in Illinois who works full time and is taking classes six hours a week toward a degree in Human Services at Southwestern Illinois College. Linda and her daughter have both been living with HIV for 15 years. They both have undetectable viral loads and are doing well.

Linda learned of her condition when she gave birth to an HIV-positive baby girl at Touchette Regional Hospital in Illinois in 1994, before antiretroviral therapy (ART) was available. She thought she and her daughter were both going to die. “In the beginning, I was just a wreck dealing with this virus,” Linda admits. “I was in denial. I had support from my family, but I felt as though they didn’t understand what I was going through.”

This is my passion. It’s something I’ve always wanted to do—to give them my story and let them know they can live a long, healthy life if they take care of themselves.

When she and her baby were transferred to Children’s Hospital in St. Louis, Linda came in contact with a social worker named Kim Donica. “Kim was the first person who spoke to me after I learned my diagnosis, the first person who gave me a hug and told me everything was going to be alright,” Linda recalls.

Project ARK

The following year, Kim Donica, along with a pediatric physician and nurse, founded Project ARK , an AIDS Service Organization with a goal of supporting HIV-positive babies, children and their families. Kim encouraged Linda to get involved in the work of the project, and through this work, Linda met other people who were coping with the same things she was. “Kim took me by the hand and just led me,” Linda said. “I got involved in support groups, the planning council, doing volunteer work at Project ARK. I started meeting other people. To know that other people are dealing with this, just like me, opened up a whole new door for me.”

Project ARK’s mission and Linda’s role have both expanded since that time. For the past ten years, Linda has been working as a family advisor at Project ARK, making phone calls and sending out clinic reminders to clients, helping with the organization of support groups, a summer camp for children and their families, a school supply drive, Christmas party and other programs designed to support children and youth infected and affected by HIV and their families.

Treatment Adherence Counselor

For the past two years, Linda has assumed the challenging new role of peer counselor in Project ARK’s treatment adherence program. As a treatment adherence counselor, Linda works 20 hours a week in the Washington University Infectious Disease Clinic, one of several clinics which collaborate with Project ARK to provide medical services to people living with HIV. She provides practical and emotional support to clients who are new to care, those who are struggling with adherence, people who have been lost to care, or clients who request to work with a peer. Case managers and other staff refer clients to the peer program and Linda acts on these referrals, calling clients and meeting with them to talk about concerns they may have related to living with HIV. She works with the client to draw up a care plan and helps to identify and remove barriers to adhering to that plan. Depending on the clients’ needs, Linda provides education about the HIV virus, explains lab results, accompanies the client to medical or other appointments or just provides a listening ear. First and foremost, Linda is a role model who can show clients that it is possible to live a long, healthy life with HIV.

Strict treatment adherence, lots of training

One reason she was chosen for this role, Linda believes, is her strict adherence to her treatment regimen. “ I’ve taken on the responsibility of caring for myself,” she explains. “I had to—I am a role model for my daughter. We take our meds together. I have not missed a doctor’s appointment. I go to support groups—now I help facilitate them as well.”

Linda went through extensive training to become a treatment adherence counselor. She participated in a one-day Level 1 training provided by the People to People project in St. Louis, which covers information about the HIV virus, peer roles, and communications skills, followed by a three-day Level II training which delves more in-depth into issues around peer work including how to work in a multidisciplinary team, confidentiality, cultural competence, workplace issues, and where to find resources. Then came the intensive two day clinical training, “the actual hands-on” component where participants went through every aspect of interacting with clients and practiced the skills they had learned through role play. Finally, Linda went through a week-long orientation to the clinic where she would be working.

Challenges

One of the most difficult challenges of Linda’s work is watching clients struggle with issues that prevent them from caring for themselves. “Sometimes clients are dealing with both substance abuse and HIV, and I don’t see them anymore because they are back out on the street. That hurts me, but I don’t give up on them. I keep calling them once a week. I tell them, ‘If I’m bugging you, let me know, but I’m going to keep calling you.’”

Talking to someone who is newly diagnosed with HIV can also be difficult, but Linda is encouraged by her own personal journey and the changes that have taken place since that day in the hospital in 1994. “It always brings me back to the time when I was newly diagnosed. But it’s a little different this time because I’m there to share my story. I tell them how long I’ve been living with this disease, and that it’s going to be OK. I can see the expression on their face—they just lighten up a little.”

Successes

The rewards of the job come in watching clients succeed, according to Linda. She recalls one client, a mother of five, who was referred to the peer program because she had not been to an appointment in five years. “I kept calling her and talking with her as one mother to another. I told her ‘Look, we’re going through the same thing. Your kids need you. You need to take care of yourself, because they need you around for a long time.’ She finally came to a doctor’s appointment, and I could have walked on clouds! Now I call her once a week and she continues to come to her doctors’ appointments.”

“This is a wonderful program,” Linda concludes. “I was alone when I got my diagnosis; I didn’t have anyone. This is my passion. It’s something I’ve always wanted to do—to give them my story and let them know they can live a long, health life if they take care of themselves. It’s made a big difference in my life, knowing that I can help someone else. My whole family is really proud of how far I have come. Knowledge is power, especially with this disease. I think I can do anything I put my mind to.”