This is the second part of a two-part series about the rise in HIV among homeless people. The first part examines how the public and private health systems must adapt after being caught unprepared to deal with the challenges of this outbreak.
James Macht sat in emergency rooms five or six times over the summer, wasting away. Lanky on his best day, the 6-feet-2 man continued to drop weight until he hit 115 pounds, suffering from poor nutrition and uncontrollable diarrhea caused by his HIV.
Then on Aug. 14, OHSU Hospital finally admitted him with a fungal infection on his arm, bronchitis and norovirus, which he suspects he picked up sleeping in Portland’s crowded homeless shelters.
Macht’s T-cell count, an indicator of how strong the immune system is, was in the single digits. A healthy count is 400 or higher.
Macht is among the thousands of homeless people nationwide who make up a recent spike of HIV cases. The Portland area is one of the hardest hit by this new front of HIV transmissions, surging among intravenous drug users and their sexual partners. In Multnomah County, 71 people were diagnosed with HIV this year, nearly doubling the number reported in that population in 2016 and 2017 combined.
The outbreak is increasingly difficult to contain because of people like Macht, who languish while trying to find the stable housing they need to help them effectively treat their HIV.
In the Portland area, social workers and health care providers are rushing to adapt to the challenges of finding homeless people and helping them get on medication. It’s a race against time to prevent the virus from spreading — and to keep those infected alive.
But they find, for homeless patients like Macht, it can be impossible to take a daily pill when each day is a trial to survive.
That’s what haunted Macht during his three months at OHSU, as he slowly gained weight until he reached 150 pounds. He knew decades of untreated HIV had ravaged his immune system to the point that a lack of good food and proper hygiene, and exposure to the Pacific Northwest’s wet winter would likely lead back to the ER or worse.
But his options looked grim: he could enter a nursing home at the age of 41, hold out hope for a permanent home to come through, or be discharged back to the street.
“I know I can’t stay here forever,” he said as he tried to balance his fifth cup of coffee for the day with shaky hands. “I don’t know what to do when I walk out of the hospital, man. I’m not going to make it through another winter out there.”
HIV led to the street
Macht contracted HIV from an ex-girlfriend who used intravenous drugs.
At the time, he didn’t know she had HIV – he’s not even sure she did. By the time he’d tracked her down after his diagnosis, she was already dead.
Macht, who says he has never done intravenous drugs, was confused when he started to feel tired all the time. He’d sleep 10 hours straight only to wake up exhausted again. He constantly came down with respiratory and other infections. Thinking it was something minor, he kept his job as a traveling salesman and was in Texas by the time of his fourth hospital visit for mysterious symptoms, which he later learned was a rare type of pneumonia.
His virus had torn into his body for so long that the white blood cells the virus targets — T-cells — had dropped hundreds of points below a healthy average. Macht asked his doctor what this pneumonia meant for him, but he said the doctor clapped him on the shoulder and said, “Don’t worry about it. You have AIDS.” Then walked out.
At first, he just lay in bed for hours paralyzed with despair. He was told he had seven years left. At most. Still, he resumed his job, hoping he could at least keep busy. He was knocking on doors in Portland selling cleaning solutions when he again became too sick to work.
Macht checked into the hospital and by the time he was released a month later, he’d lost his job because he couldn’t keep up with the schedule. He returned to a motel until his money ran out and then ended up on Portland’s streets.
There, Macht became one of a growing number of homeless people on the West Coast who then find that HIV becomes yet another barrier to access stable housing – and in turn, whose lack of stable housing tends to make them sicker.
Portland, like most places, doesn’t provide a special path to homeless services for people with HIV. Federal studies have found that the number of homeless people with HIV rose from more than 7% to 9% between 2015 and 2017, the first three years of a five-year plan for health agencies across the country sought to reduce it to 5%. The percentage continues to grow. That’s alarming because data also shows that people who don’t have homes are less likely to see a doctor regularly and even less likely to achieve good health if they are in treatment.
But no matter how sick and immobile Macht and people in his position become, they have to produce the same paperwork, show up to the same offices and stand in the same lines as everyone else who needs a place to live.
Hard to stay healthy
AIDS used to be a death sentence. But as the decades have passed, medication has become so effective that the line between HIV and AIDS is largely a measure of temporary severity. Someone with a T-cell count below 200 is considered to have AIDS.
People who are on regular medication, though, don’t stay that low for long. And if they do, they can still be healthier with a low T-cell count than someone with a higher T-cell count who is untreated.
HIV medication today is also simpler than ever. The standard is similar to birth control — one pill a day at a similar time. And it can deliver such a high efficacy rate that someone can render their virus undetectable because there is so little virus in their bloodstream.
That’s a huge improvement in quality of life for people who feel that their HIV status isolates them from friendships or romantic relationships.
Like many people living on the street, however, Macht will never be able to manage his HIV like that.
Hopelessness or defiance has led him to resist treatment at times, which gave the virus an opportunity to take hold. Even when he has tried to take his medication consistently, it was been stolen while he stayed in shelters by people who thought the bottles held opiates or other pills that could produce a high.
Before landing in the hospital most recently, Macht said his medication had been stolen four times in a few months. That can make it impossible to stay on track, as most insurance plans will only pay to replace stolen medications about three times.
Treatment hard without housing
Macht is treated at the publicly funded Multnomah County HIV Clinic in Northwest Portland. The clinic is one of several that receives federal dollars to be innovative and meet more than just patients’ medical needs.
About 20% of the clinic’s 1,400 patients are homeless or, like Macht, are in and out of housing, said clinic director Emily Borke.
When an insurance company threatens to cut off Macht for losing his medications too many times, the county pharmacy will still refill the prescription – perhaps in one or two-week doses instead of a full month so that if it is stolen again, there is less to lose. They can also put medications in bubble packs, which help some people better keep track of their pills, rather than rummaging through a backpack with their life’s belongings searching for the amber pill bottle.
But those solutions haven’t worked for Macht.
Those breaks in his prescription routine are dangerous, giving his virus an opening to beef up its defenses to the medication. Once the one-pill-a-day regimen stops working, treatment becomes more complicated. Multiple pills must be taken simultaneously, which means more pill bottles to be lost or stolen. Or, in the frantic cycle of packing and unpacking your stuff to shuttle between lines for the clinic, shelter and meals, two of the same pill could be taken at once instead of the required two different pills.
The more complicated the medication regimen, the more side effects. One of the most dire for people living on the street or in shelters is nausea and diarrhea. Without access to close and clean toilets and showers, the side effects can be embarrassing and inconvenient.
That’s where Macht has found himself. Lingering gastrointestinal problems make it almost impossible to put on enough weight to deal with his other impediments that make navigating a social service system even harder than the paperwork: Legs impaired by neuropathy, five teeth left to eat with, eyesight so poor it’s hard for him to read.
The county’s HIV Clinic provides some relief. He has a case manager who picks him up in a taxi and rides with him to buy new pants or other errands. The clinic also hired a full-time housing specialist two years ago to help patients find shelter and then, permanent housing as soon as possible. She also tries to relieve the burden of a housing system that requires Macht to leave the hospital once a week to visit an office so he doesn’t lose his spot on housing waitlists.
The clinic’s medical staff also spend a lot of time talking about patients’ priorities, which sometimes are not medical. They trouble shoot mental health issues, which also can get in the way of taking medication.
Still, for Macht, the lifestyle is so brutal on his immune system that when his health inevitably takes a turn for the worst, the clinic refers him to the emergency room.
Macht said he often feels stereotyped by ER staff who find out he doesn’t have an address or know that a Bud Clark Commons address means he is homeless. He said he was turned away after brief exams several times in the last few months even as he dropped weight and infections took hold.
His primary care provider, Mary Tegger at the HIV Clinic, said he’s probably right. It’s endlessly frustrating for her to send her clients to hospitals to be admitted only to have them come back to her office the next week no better.
Some of Tegger’s patients are capable of keeping their HIV under control. But for those who are too scattered or sick, or too deep into addiction or depression to take medication, she said, they end up in a private health care system that stigmatizes homelessness and drug use or lacks resources to admit HIV patients.
Tegger said that Macht is a textbook case of why the HIV Clinic prioritizes housing and other social services for its clients. His T-cell count was in the double digits when he entered OHSU Hospital and would likely plummet back once he was discharged if he returned to a mat on the floor of a shelter.
“His nutritional status is so poor, his immune system is so poor, so something like that could be the end for him because his body has so little to fight with,” Tegger said.
‘Get housed or die’
Macht left the hospital in mid-October. He spent four nights in a men’s shelter and then moved into The Biltmore Hotel, a building managed by the homeless services nonprofit Central City Concern.
Normally a little grumpy, Macht was buoyant the day he moved in. A permanent home made him optimistic about the future. First, he’d get glasses. Then new dentures. And then maybe, he said, he’d sign up for college classes. He was looking forward to the future for once.
But just a week later, he began losing weight again. He left the hospital at nearly 150 pounds, but the constant shuffle to find three healthy meals a day had worn him down. He was back to 127 and dropping.
He told his doctor he was taking his multiple medications each day, but she knows that he has not always done so in the past.
Mostly, Macht is lonely. He tells people he meets that his HIV status makes him feel like a red jelly bean in a bag of blue ones. And as long as he is still able to infect other people, he feels too much guilt and shame to form new romantic relationships.
That stress didn’t go away just because he found housing. He turned 42 last week, and knows going back to the street would make staying healthy impossible.
“I don’t care how good your diet is, how much you work out,” Macht said, sitting on his bed in an otherwise empty apartment after the first night he slept there. “It’s going to get you. You got to take your medicine. It’s like turning that hourglass with the sand. How big do you want yours to be? Small one, you run out of time fast.
“You either get housed and take your medications, or you die.”
— Molly Harbarger
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