World AIDS Day 2020, Ending the HIV/AIDS Epidemic: Resilience and Impact
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Nola* is a young African American mother in rural Louisiana who had stopped getting HIV care for years and was in danger of developing life-threatening illnesses that could have left her child without a mother. She is now on the right path to living a longer, healthier life and is able to guide her child into adulthood. This only happened because the Louisiana Links program reached out to her and helped get her back into HIV medical care. Sometimes it just takes that personal contact and an offer of some basic assistance to get people back on the right track. Now, with the right care and treatment, Nola has a suppressed viral load and can watch her child grow into an accomplished woman.
Nola had not planned to get tested, but found out she has HIV because she was tested for the virus during her pregnancy. At the time, she started HIV medical care and treatment to prevent HIV transmission to her child. Her child was born without HIV because of this treatment. Despite the successful birth, Nola quickly fell out of HIV medical care and stopped taking HIV medication because of the barriers in her life to receiving care. A lack of transportation was a major one. She lives in a rural town 45 miles outside of New Orleans and had no way to get her to her physician in the city. There are no doctors specializing in infectious disease in her small community. Everyone knows everyone (and their business) in her community, and she did not trust the new physician at her community clinic to keep her status confidential.
Nola also faced other challenges that prevented her from focusing on her HIV medical care. The young mother was unemployed and living in subsidized housing with her own mother. It was not an ideal situation. She wanted to return to work so she could get her own place and support herself and her child. These goals were difficult to reach because she did not have child care or transportation. All of it was made even harder because she lived in fear of how people might react if they found out she has HIV. She was hiding her HIV status from her family, her new doctor and others in her small town. The shame and stigma added to the burdens of living with HIV. The secrecy added to her stress because she had nobody in her life who she could confide in. There was nobody who understood. Nobody who could help her figure out how to get beyond the darkness and despair she felt at times so that she could look ahead toward a brighter future and start working toward it.
Nola is the type of person that the Louisiana Links program was designed to help. A key aspect of the program is to find people who have dropped out of HIV medical care. Typically, nobody reaches out to people who miss appointments or haven’t been in recently to see the doctor. All of the responsibility is left to the patient, even if the reason they did not return to the clinic was due to something that happened at the clinic. To address this, Louisiana Links was designed to find those people who have been lost to care and to help overcome the barriers that are preventing them from getting the virus under control so that it does not destroy their immune system or put them at risk for transmitting HIV to others.
Using the Louisiana Department of Health’s HIV surveillance data, a Linkage to Care Coordinator from the Louisiana Links team identified Nola as someone who may have dropped out of HIV medical care. The program wrote to her to remind her how important it was for her to get treatment, offered assistance in doing so, and invited her to join the Louisiana Links program.
Nola contacted the Linkage to Care Coordinator as soon as she opened the letter and the Coordinator drove out to Nola’s home to meet her on the same day. The Linkage to Care Coordinator provided Nola with information about clinics and available services, and also arranged appointments with an infectious disease doctor in New Orleans and to have lab tests performed. The Linkage to Care Coordinator arranged transportation to the appointment in New Orleans, and was available to answer questions, and provide support via text, calls, and for appointments whenever Nola needed. The Louisiana Links program gave her a way to get the HIV care, services, and support she needed outside of her community.
The Linkage to Care Coordinator was there for her over time, and this ongoing support contributed toward major life changes as Nola began to feel empowered about her HIV medical care and her health. She began to schedule her own appointments and transportation. She disclosed her HIV status to her mother and other family members, and she has a plan to complete her G.E.D., and has begun to apply for jobs. Most importantly, Nola is now retained in HIV medical care, regularly takes antiretroviral medication, and has been able to keep her viral load undetectable.
Nola’s experience is just one of many positive stories out of the Louisiana Links program. For more information about the SMAIF-funded Louisiana Links program, read this recent post.
Louisiana Links was one of a number of program and service delivery innovations that the Louisiana Department of Health was able to undertake as part of their participation in the SMAIF-supported Care and Prevention in the U.S. (CAPUS) demonstration project. The three-year demonstration project supported 8 state health departments in designing and implementing innovative approaches to reducing HIV and AIDS-related morbidity and mortality among racial and ethnic minorities living in the United States.
SMAIF improves HIV prevention, care, and treatment for racial and ethnic minorities through innovation, systems change, and strategic partnerships and collaboration. SMAIF supports 33 projects in 40 states, D.C., Puerto Rico, and Guam that are conducted by 200+ health departments, health centers, and community organizations. For more information on SMAIF visit HIV.gov/smaif.
*The client’s name has been changed to protect her privacy.