For AIDS patients, learning to traverse the ‘cascade of care’ leads to long-term health
By David Brown,
Johneisha Jones’s biggest stumble in the “cascade of care” came the night she almost jumped off a bridge in Balboa Park.
She had arrived in San Diego a month before, in September 2010. She was infected with the AIDS virus, sick, lonely, depressed and full of self-loathing. On the other side of the railing was a fall onto a freeway. It looked like a good way out.
“It was night. There were people walking by. I was arguing with myself.”
What kept her from going over the edge that night were thoughts of her son. He was 16, living with her mother in Northern California after Jones had moved to San Diego in search of better medical care. The boy’s father, an important person in his life, had been murdered years before. He’d be without a parent.
She headed off the overpass, toward a hospital at the University of California at San Diego. It was a long short walk.
“I kept turning around and saying, ‘I’m going to jump.’ It was back and forth all the way to the hospital.”
At the emergency room she told people what she was thinking of doing. She was admitted to the hospital for a week.
Jones’s story is all her own. But it’s also emblematic of problems endured by hundreds of thousands of HIV-positive Americans like her. That is why she is willing to tell it.
“I’ve been waiting for this opportunity,” she said.
There’s a new term in the world of AIDS care and research: the cascade of care. It refers to the sequence of steps a person must take between becoming infected and getting on the path to long-term health.
A person must first get diagnosed with a test, and then be referred to a doctor. She has to go to the first appointment, and the doctor has to provide the correct treatment. She has to go to follow-up appointments. She has to take the medicines prescribed, every day. They need to work or be switched out for ones that do. If all goes well, the virus will disappear from the bloodstream. The patient will have an undetectable “viral load”— the goal of treatment.
Only 28 percent of the United States’ 1.1 million people infected with HIV are there today. Jones is one of them. It took a long time.
Keeping people on their feet along the cascade care is now a major source of effort and research in the American AIDS community.
The organization that helped Jones back on her feet is Christie’s Place, which has a project to improve use of HIV medical care for people of color in San Diego, and especially for Hispanic women.
Christie’s Place is one of 10 organizations that has gotten money from AIDS United, a non-profit specializing in public-private partnerships. AIDS United received $3.6 million from the Social Innovation Fund, which requires that federal seed money be heavily matched by private donations. In AIDS United’s “Access to Care” (A2C) initiative, matching will bring the total amount to assist the 10 grass-roots outreach programs to $14 million.
When Jones was discharged she was referred to Christie’s Place, an AIDS resource center. People there helped her get food, a bus pass, psychotherapy, a ride to her clinic appointment — little things and big things that are keeping her from stumbling again.
Jones doesn’t know where her story begins, if by that one means when— and by whom— she became infected with HIV. All she knows is that by early 2008 she was very ill.
She was living in Antioch, Calif., outside Oakland, working as a department manager in a clothing store. In February she went to a local hospital, was diagnosed with pneumonia, given antibiotics and sent home. A week later she was much worse and could hardly move. She went back to the hospital.
“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.”