Barbara Roberts was 44 years old and thought she had a bad case of the flu that would not go away. After returning to the emergency room a second time, she spent three days in the hospital while doctors ran tests. On December 21, 1996, she learned she had HIV.
"It surprised me because it never occurred to me that that's what was going wrong with me," Roberts told Healthline. "I was in total shock, disarray, scared to death because back then, it was like a death sentence."
She left the hospital with a medication regimen and began visiting an HIV clinic. The staff there, she said, helped calm her fears. "Everyone was so nice to me there. They were so kind and calmed all my fears; they tried to at least," she said.
Her early treatment did not go without complications. About a year after her diagnosis, Roberts developed extreme fatigue, shortness of breath, nosebleeds, and noticed that the skin on her hands and the bottoms of her feet had darkened. An intense nosebleed sent her back to the emergency room, where doctors found she had significantly low blood platelet counts. She spent 25 consecutive days in the hospital receiving blood and platelet transfusions. Doctors determined one of her medications had caused the symptoms and adjusted her treatment.
"After that, I have never gone back to the hospital or had any problems with my medications, and I've had different ones over the years," Roberts said.
In 2021, her rheumatologist, Debbie Hagins, MD, medical director of the Coastal CARE Centers in southeast Georgia, approached Roberts about joining a clinical trial for Idvynso, a daily two-drug single-tablet treatment developed for people with HIV who are virally suppressed. Roberts agreed.
"She explained the medication to me and asked if I would like to be in a study," Roberts said. "I felt it was a privilege for her to ask me to be in this study."
The transition to the new medication was largely smooth. "The only thing I remember from initially taking the medication was I had really vivid dreams for about two weeks, and it's been smooth sailing [since]," she said.
On April 21, 2026, the FDA approved Idvynso. Roberts continues to participate in the trial through an open-label extension, a phase in which researchers collect additional data to better understand the drug's long-term safety profile. Idvynso is now the only prescription medication she takes. She also takes Vitamin D and folic acid supplements.
Now 74, Roberts lives with age-related back pain and arthritis, but said she is grateful she does not live with other chronic conditions. Her 30-year journey with HIV, which began with a misdiagnosis and a hospital stay that nearly cost her far more, has brought her to a point where managing the virus requires a single tablet each day.
