“The minute I walked in this one doctor looked at me and said, ‘Have you ever had an AIDS test?’”
She answered that she had been tested, or was told she had been the year before, when she had shingles. That viral infection is very rare in young people unless they have a damaged immune system. Shingles is a red flag for HIV/AIDS. That test was almost certainly positive. Why she was never told of the results is a mystery, but not a rare one. It’s one of the stumbling blocks in the cascade of care.
She was tested again. It was positive. The day was Feb. 29, 2008— Leap Day, “the day that changed my life,” she said.
She was admitted to the hospital for three weeks. Her CD4 cell count — a gauge of her immune system health — was far below 100, in a zone where risk of death is high. (Normal is more than 600). She had Pneumocystis jirovecii pneumonia, the most common serious “opportunistic infection” of AIDS patients.
When she was discharged, she says, she was given no referrals for where to go for help. She was told to look on the Internet, which she did. She was not put on antiretroviral drugs. She was given medicines for pain and for thrush, a painful yeast infection of the throat that is also a signature illness for AIDS.
Jones didn’t have medical insurance; it hadn’t kicked in yet on her job. However, she had already applied for Medi-Cal, California’s Medicaid program, and was accepted while she was in the hospital.
She found a clinic in nearby Pittsburg, Calif., that took care of HIV patients. She was put on antiretrovirals, but after five months her doctor left and move to Oakland. A nurse practitioner who had never taken care of HIV patients was assigned.
“My medicine was changed so many times. It was basically — he knows what he’s doing. I just kept taking his word for it.”
She made her way to San Diego because an HIV-positive friend told her support and care were available there. But when she got there she was deeply depressed, taking her pills only once in a while, and with a CD4 cell count only around 100. She also found herself silently rejected by someone close to her, in this case a friend who’d agreed to put her up. Stigma, many studies have shown, is one of the big obstacles that trip people up in the cascade of care.
“I could tell by some of the things she was doing around the house that she had problems with me being there. When I would leave the bathroom she would go in and wipe the seat down. I would cook something and she would stand there and watch me.”
So one night she headed to Balboa Park.
Today, Jones has a completely suppressed viral load. Her CD4 cell count isn’t normal, but it is out of the danger zone. She is doing volunteer work at the clinic where she gets her care. Her income comes from Supplemental Security Income, a federal program for the disabled. Her son is in community college, and she will be a college freshman herself in the fall, with plans to study social work.
“I’m just glad to be here now,” she said last week. “I’m in a very good place spiritually and personally. I’m happy.”