HIV care controls the virus but fails to keep some patients alive 53%
By Erin Allday0%
7/19/2026, 11:00:00 AM
Keywords: Hiv, Ucsf, Health Care, Trauma, Addiction, Mental Illness, Housing Instability, Survival, Death Certificates, Care Continuum
BS Summary: This article contains 34 faulty reasoning types, including Post Hoc (False Cause), Anecdotal, and Ambiguity (Equivocation), with Confirmation Bias as the most egregious example at 19.3% saturation with 280 hits. Analysis detected 2,846 faulty-reasoning hits from 1,452 analyzed words, generating a BS Score of 52.4% and a BS Rank of 53% (8,642 of 18,369 articles). This article is worse (more manipulative) than 53.00% of the article peer group.
Wanda Demus, 72, has lived with HIV for more than half of her life.
She’s also lived with complex PTSD, a particularly disabling form of chronic post-traumatic stress, and has battled addiction for decades.
She’s been unhoused for long periods and is a victim of domestic violence and sex trafficking.
All of those factors have been life-threatening at times.
And in many ways, HIV has been the least of her concerns.
But the way people with HIV are cared for in the United States often prioritizes the infection and ignores those other issues, say Demus’ care providers at UCSF.
And that oversight, Demus’ health team says, is killing people.
“It’s been sort of understood that now that we have (medication) for people with HIV, they’re living normal life spans.
And that’s just not true,” said Dr.
Edward Machtinger, co-director of the Women’s HIV Program at UCSF.
“It’s not what we were seeing in our clinic.
People are dying all the time, prematurely, and from preventable causes.”
Women with HIV on average die 12 years younger than their uninfected peers, according to national studies, but it’s rarely because of the virus alone.
They often have a host of other issues, including a history of trauma, that can be deadlier than the infection or that can interfere with their ability to control the virus.
There are similar trends among men with HIV, especially men of color, but it’s not as pronounced; Men on average die about nine years younger.
Machtinger and several of his colleagues published a study last month that analyzed the deaths of 40 women with HIV who have died under their care over the past 20 years.
They found that their deaths were almost always multifactorial: sometimes addiction played a role, sometimes mental health, sometimes HIV.
Often all three contributed to the death.
The women’s death certificates, though, rarely told that full story, the study found.
For example, substance use and mental illness were the two most common causes of death, apparent in 23 cases, according to the study analysis, which usually listed more than one cause.
But substance use was only mentioned on five of the death certificates, and mental illness on only two.
HIV, meanwhile, was listed as a cause of death on 27 certificates, but Machtinger’s team determined it was the cause of death in only six cases.
In many cases, Machtinger said, the certificates simply didn’t capture the underlying issues that caused the women to succumb to the virus — like a mental health condition or substance use that makes taking their medication regularly almost impossible.
“The death certificates were telling a story that most people who were dying with HIV were dying of HIV,” Machtinger said.
“They weren’t telling the story in a way that was accurate.”
This oversight is a problem because so much emphasis in the HIV care community is on the virus alone, said Machtinger and his colleagues.
“If we keep focusing on HIV as the sole cause of people’s demise, we’re going to miss the boat,” said Jennifer Cocohoba, clinical pharmacist for the women’s HIV clinic.
In public health, HIV is approached as a “care continuum,” with the first stage being testing, so people who are infected can be identified and get into care, and the last stage being viral control, meaning patients are on their medication and the virus is not detectable in their blood.
The continuum is used to track how well public health agencies are doing at managing HIV care in their communities.
The assumption is that once people are virally controlled, they’re in good shape, so that is the end point of the continuum.
Machtinger recalled Dr.
Anthony Fauci, who before the COVID-19 pandemic was known primarily as the country’s lead HIV expert, being a proponent of getting everyone to that care end point.
But Machtinger wondered, he said, “When was the last time (Fauci) was at an HIV clinic?
Because these people are not doing great.
They’re doing poorly.”
Machtinger and his team are proposing adding another stage to the care continuum: survival.
The UCSF study only looked at women in the Bay Area, but Machtinger and others believe the results would hold up nationally.
Indeed, care for people with HIV is uneven across the country.
In some places, patients are on older drugs that don’t work as well, or they are getting no care for addiction or mental health challenges that may be impacting their health.
“I went to a center in Texas and met people who were on old medication regimens, and a lot of them were really sick because they weren’t taking their meds,” said Evany Turk, co-executive director of the Positive Women’s Network, a nonprofit that supports women with HIV.
Turk is HIV-positive, and she said she struggled with getting appropriate care for years — so she appreciates how complex these patients’ needs are.
Just three months ago, a woman Turk was working with in rural Texas died after developing Kaposi’s sarcoma, a cancer that once was a hallmark of AIDS and is now uncommon.
“Eventually she just got so depressed that she stopped trying anything,” Turk said.
“It took five years from the day she got diagnosed for her to die from it.
And this happens regularly — we just don’t hear about it.”
About a decade ago at UCSF, as care providers at the women’s clinic began to understand how much trauma was affecting their patients’ overall health, staff put in place a trauma-informed care model.
That model is reflected in everything from the calming colors on the waiting room walls to receptionists having patience for patients who regularly show up late for appointments.
Patients who have drug use problems or mental health challenges can receive care at the clinic, if they want and are ready for it.
They can get help with housing, too, and other social needs.
This model, Machtinger and his colleagues believe, is the best way to treat the HIV infection along with the whole person.
Another key factor: the relationships between care providers and patients, he said.
“A lot of what people need is consistent, supportive, safe, stable relationships,” Machtinger said.
That comes into play often with some patients who have been receiving care for years, said Katy Davis, a social worker and trauma therapist who is co-director of the clinic with Machtinger.
“We see people through their ups and downs, and we still love them and we are 100% here for them, no matter if they are making excellent choices or choices that are harming them,” she said.
Demus remembers the first time she met Machtinger, whom she now calls Eddy, in the early 2000s when he was just getting started as an HIV doctor.
Demus, who tested positive for HIV in 1985, had been treated at the city’s main HIV clinic, Ward 86, when she switched to the women’s clinic.
“Eddy told me from the beginning,” Demus said, “I never forgot it, he told me, ‘Wanda, I’m not here to judge you, I’m here to help you.
What can I do to help?
’”
Over the years, she would tell Machtinger and other care providers at the clinic about difficulties that she’d never felt able to talk about before.
She told them about being sex trafficked as a teen and abused by multiple partners.
She was frank with them about her drug use.
“He wasn’t there to judge me,” she said, “so I let him know who I was.”
Demus’ care has been a team effort.
At the women’s clinic there is a pharmacist to stay on top of her medications, which include a pill to fight HIV and others to manage mental health symptoms, such as the nightmares she frequently suffers.
She has a social worker whom she calls her “big sister,” and who Demus knows will come look for her if she slips back into her addiction and ends up on the street.
It’s happened before.
Demus will have years where she’s stable and sober, and then she’ll relapse and disappear.
When they find her again, she’s often gone off her HIV medication.
She’s been hospitalized multiple times, and suffered a nearly fatal aneurysm last year.
But she’s been doing well since November — she has a safe place to live and she sees her large family most weekends.
She checks in at the clinic almost daily for group therapy and sometimes breakfast.
The clinic saved her life, she said.
“There were times when I didn’t even want to live,” Demus said, “and this place gave me a reprieve.
Like it made me believe that maybe I was worth living.”
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