Barbara Roberts was 44 when a persistent fever landed her in the emergency room in December 1996 and she learned she had HIV. At the time, the diagnosis felt like a death sentence; life expectancy for people with HIV in the mid-1990s was far shorter than it is today. Barbara left the hospital with a medication plan and the guidance of an HIV clinic that calmed some of her fear.
The first year on treatment brought setbacks. She became unusually tired, had shortness of breath, nosebleeds and darkening of the skin on her hands and feet. A severe nosebleed sent her back to the ER, where doctors found critically low platelet counts. For 25 days she received blood and platelet transfusions while clinicians discovered that one of her medications caused the problem and switched her to a different regimen. After that change, she didn’t return to the hospital and continued on various treatments over the years.
In 2021 Barbara’s rheumatologist, Debbie Hagins, MD, invited her to join a clinical trial for Idvynso, a once-daily two-drug single-tablet option for people with HIV who are virally suppressed. Barbara accepted, partly because she welcomed taking just one pill a day and partly because she felt it was an opportunity to help others. Her main side effect early on was vivid dreams for about two weeks; otherwise the transition was smooth.
Idvynso received FDA approval on April 21, 2026, and Barbara remains in the trial’s open-label extension to contribute long-term safety data. Today it’s the only prescription she takes for HIV; besides that she takes vitamin D and folic acid supplements. At 74 she manages age-related back pain and arthritis but has no other chronic conditions requiring medication.
Barbara’s experience reflects how HIV care has transformed. Her doctor, who has treated people with HIV since the late 1980s, describes the shift from treatments that often made patients feel worse than their illness to modern regimens that allow people to pursue family, travel and careers without the same limitations. Still, Dr. Hagins notes that HIV remains a chronic condition associated with higher risks of bone, cardiovascular and kidney disease and with accelerated aging. That means clinicians aim to prescribe the fewest medications at the lowest effective doses and regularly review regimens as patients age, adjusting doses or switching drugs to avoid late-emerging side effects.
For Barbara, the choice to join a trial was both practical and altruistic. She says hearing about people whose HIV led to organ damage or other complications convinced her that a simpler regimen might reduce future risks. She also wanted to help advance options for others who will need lifelong treatment.
When she was diagnosed, Barbara kept her status private except with close family, partly because of the stigma that still surrounded HIV in the 1990s. In 1997 she met Johnny L. Roberts, the love of her life. Telling him about her diagnosis was one of the hardest moments she’d faced, but he embraced her and offered steady support. Barbara credits increased public knowledge and understanding of HIV with reducing stigma over time and hopes more openness will encourage others to seek care and speak honestly about their experiences.
Now three decades into living with HIV, Barbara describes a life of resilience and gratitude. Advances in treatment have extended life expectancy and improved quality of life for many, but ongoing research and new options remain important because people living with HIV will need safe, tolerable therapies throughout their lives. Barbara continues to participate in research and to share her story as an example of how someone diagnosed in the 1990s can live well into older adulthood, balancing medical care, relationships and the everyday challenges of aging.