Early in 2020, shortly before pandemic entered the everyday lexicon and face masks became de rigueur, I went to my scheduled Suboxone appointment to find the doctor’s office more sterile than usual.
The waiting room walls, once cluttered with rock festival posters, pharmaceutical displays and photocopied warnings—the doctor does not prescribe opioid medications, the doctor does not make up missed Suboxone appointments, the doctor does not replace lost Suboxone prescriptions—were now bare. Packed boxes stood piled in the front of the suite, where the familiar cadre of nurses and office managers had been replaced by a skeleton crew of one.
On my way to the car, I saw him tossing boxes in the dumpster.
My first thoughts leaned toward office renovations. Maybe they’re painting the walls, I naively said to myself. But the sullen look on the face of the remaining office manager—a kind woman with whom I’d shared small talk about my kids and the weather over the years—told me I was wrong. The doctor was immediately retiring, she told me, and this would be my last appointment. There would be no questions about the progress of my recovery, no checking my blood pressure, and no urine samples.
Within minutes, the doctor had handed me a list of SAMHSA-approved providers in the Philadelphia region, a copy of my patient file, and a 30-day Suboxone script. On my way to the car, I saw him tossing boxes in the dumpster.
I took the news to my therapist at the Department of Behavioral Health Services (DBHIDS) satellite office in Northeast Philadelphia. She then spoke to the department’s Suboxone nurse on my behalf, before informing me that I would be required to participate in an intensive outpatient program in order to continue my care.
“Our Suboxone program requires group therapy,” she told me, informing me of one of the many barriers I’d face on my way to continuing treatment—the apparent need to sit in a room filled with strangers three hours a day, three days a week, and talk about my feelings. I slumped into her office sofa—it was one of my last in-person appointments before the pandemic hit—offering fruitless protestations.
After three years in recovery—spent continuously adhering to a strict schedule of Suboxone (the brand name for a buprenorphine/naloxone formulation), Zoloft, individual therapy and clean urines—all I needed was a new doctor to write me a script for buprenorphine.
What I would find instead were barriers to treatment, including a list of SAMHSA-approved Suboxone providers not offering the medication in practice and X-Waivered doctors not accepting new patients. I also experienced burdensome requirements to join group therapy programs through Philly’s DBHIDS—part of an ironic, near-Kafkaesque nightmare, seeing as I had left the department’s intensive outpatient program three years earlier, determined to take control of my own recovery after they refused to give me Suboxone.
The Depressing Norm of Stigma
Though born of sudden bad luck, my situation reflected a perfectly ordinary reality: that access to medications for opioid use disorder (MOUD) in the US is plagued by stigma against people who use drugs. Several studies mirror my personal experience and show that it was far from unique.
Among those studies is a recent one led by Harvard School of Public Health Assistant Professor Michael Barnett, which sought to assess real-world access to buprenorphine treatment. The investigation, colloquially referred to as a “secret shopper study,” found that many providers neither offered new appointments nor provided first-appointment induction to people who were currently using unprescribed opioids. For Medicaid patients like myself, the outcomes were worse.
“If someone with opioid use disorder is coming into the clinic and ready to start buprenorphine, that’s when they should receive it,” said Dr. Barnett, adding that, on a positive note, the study found patient wait times were short once they could make an appointment. “Every single week, every single day that you wait and you don’t actually take advantage of that opportunity is basically just saying we’re ok with overdoses and people dying.”
“Doctors can’t just leave and say, ‘Here’s a list of numbers.’ It has to be more than that.”
Although my doctor gave me 30 pills on his way out the door, it took me six weeks to find a new provider—a frustrating, discouraging process made manageable only because I, like many of my peers, have learned to stash away extra medication over the years. Every doctor’s warning, every pharmacist’s glare, and every paperwork kerfuffle with my health insurance made me realize that the system might at any moment take away my medication when I need it most.
My search began with the names of local providers cross-listed with those of Medicaid doctors. I’d spent my first year in treatment paying out-of-pocket, something I neither wanted nor could afford to do again. One local recovery center that touted its statistics and “one day at a time” memes on social media chose not to return my calls. Several Medicaid-approved physicians were no longer accepting Medicaid.
Only one doctor would see new patients. “The doctor can see you in two months,” a woman told me, matter-of-factly, on the phone. Neither my script nor my stash would last me that long.
I don’t know how many providers I called, how many tuned me down, how many weren’t X-Waivered, or how many weren’t taking new patients. I don’t know how many barriers I encountered, but it was enough—enough that I’m glad I stashed away pills. Without them, what would my options have been, and how much risk would they have entailed? Even with them, I was working on borrowed time.
“[Doctors] can’t just leave and say, ‘Here’s a list of numbers.’ It has to be more than that,” said Dr. Barnett, who, as luck would have it, also studied the general problem of continuation of care. “Patients need a transition plan.”
According to his research, which focused on primary care physicians, the loss of a doctor without a proper transition plan resulted in an increase in the use of specialty, emergency room, and urgent care services, all of which resulted in adverse health outcomes for the populations studied.
As Dr. Barnett noted earlier, barriers such as discontinuation of care and difficulty finding treatment have exaggerated consequences for MOUD patients, too often resulting in overdose and death. The problem continues to play out in real-time and record numbers during the COVID-19 pandemic as quarantines and stay-at-home orders prevent people from accessing the lifesaving treatment they need.
Neither are such risks evenly distributed among different demographics of MOUD patients. As a lower-middle class, white Medicaid patient in a large urban area, finding access was already extremely hard. But our racist and classist medical structure means that many other people, including people of color and those living in rural areas and/or experiencing poverty, can have it much worse.
“Countless people do avoid getting help.”
According to Daniel Garrett, who lives in a small town in Tennessee, lack of access to buprenorphine and other MOUD options is a feature of the system. “Countless people do avoid getting help because they can’t find Suboxone providers,” Garrett, who runs the website Tennessee Harm Reduction, told Filter. “I’ve heard many fellow opioid users say they don’t know where to find Suboxone doctors at.”
Stigma against MOUD can be especially acute in his part of rural Tennessee, said Garrett. He related how last summer, his own search for Suboxone saw him facing unnecessary stints in detox, roundabout trips to various pharmacies, and weekly visits to cash-hungry doctors—a major financial burden for someone without health insurance.
Although, in the end, Garrett found treatment through a grant-funded program with the help of his connections to Tennessee’s harm reduction community, the state’s issues remain. It’s tellingly rare for MOUD providers to advertise their services in rural areas; Garrett can only recall two in Northwest Tennessee in recent years: a short-lived digital billboard, and some blue-and-white ads slapped on telephone poles. And despite spending a good deal of his time handing out syringes, naloxone and other items in the drug-user community, “I heard nothing about these ads,” from anyone in that community, he said.
Nixing the X-Waiver Would Be Just a Start
In recent weeks, the structural problems at the base of many of these barriers, most notably the X-Waiver, are back in the public sphere. The Trump administration, somewhere between burning down the Capitol and being impeached for a record-breaking second time, moved to nix the now-infamous policy, giving doctors more flexibility to treat patients with and prescribe Buprenorphine. But after his first week in office, President Biden blocked that decision. (Pennsylvania legislators, meanwhile, will consider a bill that would make it harder to obtain X-Waivers in the state.)
Whether or not the Biden administration holds to that course, Dr. Barnett pointed out that many barriers to treatment are provider-erected—above and beyond the X-Waiver regulation, and because of stigma against people who use drugs.
“The X-Waiver is gone right now,” said Dr. Barnett, speaking before the Biden administration’s position had emerged. “But the culture and patterns of prescribing and comfort level of prescribing that the X-Waiver put into place did not disappear.”
“It’s much better to have no X-Waiver than to have an X-Waiver,” he continued. “But a lot of the damage has been done and without additional effort, I don’t know that it’s going to necessarily evaporate all barriers.”
I stash away a couple of extra pills, just in case.
My new Suboxone doctor’s office is about 15 minutes away from my house, just a short distance from a methadone clinic that once sent the neighborhood into a fury. He calls my script into the pharmacy every month—something my old doctor told me wasn’t possible as he handed me a paper prescription with each visit. When COVID hit, he switched to a telehealth model, protecting the safety of patients in his care.
And every month, he asks me about the progress of my recovery, whether I have any cravings, and if I want to keep the same dose. With that last question, I always say “yes,” so I can stash away a couple of extra pills, just in case he decides to retire.