Few are tackling stigma in addiction care. Some in Seattle want to change that

Johnny Bousquet should have gone to urgent care earlier. He has insurance and plenty of sick time. But after decades of feeling beat up, ignored, and shamed by the medical system as a recovering addict, Bousquet says he avoids it all together — often choosing instead to engage in a game of chicken with whatever ailment he's battling.

This time, he was losing. His flu-like symptoms worsened and stretched on for weeks. Finally, one morning – in a delirium of nausea and unrelenting thirst — he called his co-worker to tell her he wasn't coming in and drove himself to a hospital in west Seattle. Staff took some labs and told him to settle in for a long wait.

Ten minutes later, two urgent care nurses came out looking alarmed.

"I could just tell something was really wrong, the way they were looking at me," Bousquet says. "I was like 'What – is the flu this bad?' "

Diabetes. It came on suddenly for Bousquet. He had no idea. "They were like, 'We're taking you across the street,' "he says. " 'Your A1C is higher than we've ever seen it before.' " A1C is a measure of blood sugar.

The diagnosis would change his life forever, but it was in some ways the easier of the two difficult problems he was grappling with that day. For diabetes there are tests, medication, protocols and empathy. None of these tools were available to Bousquet to help him mitigate the stigma he faced from the medical system because he has struggled with substance abuse.

Substance use disorder has long been classified as a disease, but Bousquet and others like him who are in recovery say stigma around this condition is pervasive in the field of medicine. Their stories illustrate the steep social and financial costs of stigma not only for the people who are in recovery but for communities across the country who are grappling with high rates of addiction.

Policies have allowed medical stigma to prosper for decades

It's not unusual to find patients in the Emergency Room at Seattle's Harborview Hospital with everything they own stowed under a chair. The facility is downtown. Harborview sees people grappling with homelessness and substance abuse every day.

"We try to do the best we can for the patients that we see," says emergency room physician Dr. Herbert Duber. But he admits that patients struggling with substance abuse are mistreated by medical professionals, even at his own institution. "There's no question that happens. Does it happen universally? No? But does it happen? Absolutely."

Part of the struggle, says Duper, is the way this disease presents– and the lack of resources to address the resulting behaviors. "It can be hard to distinguish," he says of the drug seeking behavior that patients sometimes engage in. Detecting it is both art and science. Patients are also frequently hostile. "Not a shift goes by where I don't get yelled at." Doctors are human too, he points out.

"Stigma is not just a consequence of providers," says Rahul Gupta, director of the Office of National Drug Control Policy for the White House. "It's also policies that have allowed that stigma to prosper over the decades."

Gupta traces stigma back to the medical training providers receive. The problem is perpetuated, he says, by red tape and poor pay in the field of addiction medicine; providers often shy away from entering it altogether. The pharmaceutical industry and medical research does not invest enough in developing solutions,

"Where we are today with addiction care is no different than where we were with cancer a hundred years ago," Gupta says. He imagines a world in which addiction is treated like any other disease – with comprehensive screening protocols, best practices and robust treatment options.

But programs to realize this vision are nascent, and the opioid crisis continues to hold its grip on cities like Seattle. Thousands of people overdosed in the region last year; across the country more than 100,000 people died of opiod overdose. In Seattle, the problem has swallowed up entire city blocks where people smoke and buy fentanyl openly as outreach workers comb the streets handing out Narcan, which can help people who are overdosing on an opioid.

As in the case with many cities, it's impossible to disentangle substance abuse from the homeless crisis in Seattle. At the Co-LEAD program that helps people transition out of homelessness, 99 percent of participants struggle with substance abuse or mental health diagnoses — or both. Tens of thousands of people live unsheltered across the county.

With the fraction of this population the Co-LEAD program is able to help, they've seen unprecedented success bringing people in off the streets and keeping them housed. Helping their clients access medical care is a cornerstone of this intervention.

Prejudice compromises treatment

Johnny Bousquet's been in recovery from opioid addiction for more than five years without a relapse. He started dabbling in crack and powder cocaine as a teenager. He was still a kid when his mother died of an overdose. He's been in rehab, ERs, ambulances, seen people overdose, knows how to recognize the abscesses that come with intravenous drug use.

But when he landed in the ICU a few months ago it was a first; it induced in him a new level of fear. "I was terrified about what was going on with my body," he says.

Alone in his hospital room, the hours stretched on. Night came. He gradually started to make sense of his symptoms, including his compromised vision. For weeks, he'd been watching the world narrow and fade through an obstructed view.

At 4 a.m. the night he was admitted, another alarming thought entered his mind: his methadone. That's a medication that helps people who are struggling with opioid dependence.

Many patients wait in line daily for their dose. Bousquet only visits the methadone clinic every few weeks. He worked hard – over years – earning the ability to take the medication home. If he called and asked for a new prescription over the phone, the clinic could revoke this hard-won privilege.

Relapse is not something Bousquet worries about much at work. He's an outreach worker at a program called Co-LEAD, where he helps people struggling with homelessness and addiction come in off the streets. Even when he encounters drugs — which is often – he's able to maintain a professional boundary. Plus, he says, watching people struggle offers regular reminders. "I see the worst part of this life every day."

But the methadone clinic – his old nemesis - is different. That line for the daily dose is where he spent years selling drugs, socializing, hooking up with women, scoring drugs. It's too easy. It's dangerous. To be sentenced to stand in that line every day again - relapse comes into view. He could see it.

He needed the doctor to call the clinic.

But then, another thought, also terrifying: He would have to first tell the doctor he was on methadone. He worried about what would happen once the doctors labeled him an addict. Maybe if he took it head on, he thought. "I'm just gonna tell them politely, I'm not here for drugs."

It didn't work.

"I'm not doing that," the doctor snapped at his request to call the clinic. "You're all messed up. Why would I do that?" She told him to call himself.

It was embarrassing. He started crying. Sometimes, Bousquet hears himself mouth the kinds of words his stepdad taught him — the language of abuse, desperation, the cornered pit bull. He yelled at the doctor, called her names. She threatened to call security.

He didn't see her again during his four days in the hospital.

Sobriety, a good job and fluency in the language of trauma helped Bousquet endure this kind of treatment at the hands of the medical system in order to get the care he needed. That's not the case with his residents, who are often in life-threatening crises. So extreme is their fear of the medical system, says Bousquet, "They'd rather die than go see a doctor."

People such as 35-year old Nick Barrera. At an earlier point in his life, Barrera was a homeowner with a job in retail. Life took a bad turn and Barrera ended up living in a tent for years. Now housed with the Co-LEAD program, he is trying to pick up the pieces.

Barrera is HIV positive.

A few years ago, things were going well with a doctor he'd been seeing for months. His disease was under control. But – just as in Bousquet's case – when the doctor found out Barrera was struggling with substance abuse, everything changed. "A nurse came in and they took out all the syringes in the room," he says. "Just right in front of me. And I was talked down to like a child almost. It almost became embarrassing to show up."

He quit going.

An infection in his gallbladder, the ER and emergency surgery quickly followed. The doctors told him the disease had progressed from HIV to AIDS. He grew weary of hearing them counsel him to make better choices. "They look at you and they're like, 'Well, you know, if you were to just quit using, then everything would be fine.'"

Things are better for Barrera lately. The Co-LEAD program helped him find a new doctor and short-term housing. He's working again, making food deliveries. He and his fiancé have a plan to move into long-term housing.

But one medical crisis could cost him these fragile gains – and strain the system of taxpayer-funded supports on which he and thousands of others in this city rely.

Nick Barrera says he'd like to tackle a big medical problem – his dependence on fentanyl. "It is very much a dangerous substance and it's dumb as hell that I'm taking it," he says. "But right now it's my only coping mechanism."

At the short-term housing facility where he lives, Barrera stands by a tent out front. Residents aren't required to quit using in order to move in here; often this tent is where they gather to smoke or use together.

It's also become, for Barrera, a place of community. Only now, he says, after months of stability and access to care, is he able to imagine a world without fentanyl. He's started dreaming about maintaining a steady job and a marriage. He recognizes that his addiction is standing in his way.

He's hoping to start Suboxone soon, a drug that helps people ease off opioids. For that he'll need a prescription – and a doctor he trusts.

This story is part of a reporting fellowship sponsored by the Association of Health Care Journalists and supported by The Commonwealth Fund.