Five days a week, a van parks outside the Baltimore City Detention Center and offers on-demand access to buprenorphine, a gold-standard medication for opioid use disorder that’s been shown to reduce the risk of death and health complications from injecting.
For 17 years, the Behavioral Health Leadership Institute, or BHLI, the nonprofit operating the service, has innovated a “low-threshold” (meaning low-barrier) treatment model in which people can leave their first visit with a prescription. That means no required group attendance or abstention from drugs. It also means that the organization covers pharmacy co-pays and attaches Polaroid pictures to the prescription in lieu of photo identification. “Nobody needs an appointment. People just show up,” said Deborah Agus, executive director of BHLI. “We’re about as no-barrier as you can be.”
To ensure that the program, called Project Connections at Re-Entry, could continue providing on-demand access to buprenorphine, BHLI has been forced to turn down federal funding — twice.
The grant money rejected by BHLI was part of growing federal effort in recent years to pour much-needed funds into substance use disorder treatment. As tens of thousands of Americans have died annually from preventable overdoses for years now, the Substance Abuse and Mental Health Services Administration, or SAMHSA, a federal agency, is beginning to make historic investments in substance use disorder treatment to match the unprecedented death toll.
Yet the grants — a total of $5.5 billion for fiscal year 2021, the highest value ever granted for substance use disorder treatment, which comes as a result of the agency’s enacted budget and the American Rescue Plan Act — may not reach some substance use disorder patients and low-threshold treatment providers. At fault is the grants’ prohibitive requirements, which burden programs and re-traumatize a highly vulnerable population, multiple health department officials and service providers warned The Intercept.
Six health department officials from five states, most of whom spoke with The Intercept on the condition of anonymity, denounced the Government and Performance Results Act tool, required of SAMHSA-funded programs per the GPRA but designed at the discretion of the agency. The controversial questionnaire, which is administered by a health worker to a patient before medication can be prescribed, aims to assess program performance. In reality, according to the officials, it undermines the program’s ability to deliver accessible lifesaving treatment.
One of the officials from a state receiving some of the most funding said the sentiment goes far beyond just those interviewed: “I have not talked to a single state official in [my state] or in the country that believes the reporting requirements are fine. Everyone is [to] some degree wishing we didn’t have to do it or blood-boiling pissed off about it.”
The “odious” GPRA tool, as that official called it, has real consequences. Four service providers (including Agus, the BHLI executive director), a former New York state official who managed the SAMHSA Opioid Response grant for the state, five anonymous state health officials, and an advocate from the nonprofit dedicated to representing the interests of harm reduction officials working in state health departments all characterized the GPRA tool as being re-traumatizing for patients.
Granular details about physical abuse are sought after, in addition to quantifying highly stigmatized personal topics, including the precise frequency of a patient’s participation in graphic sexual acts, the number of criminalized behaviors (including illicit drug use) performed per month, and the number of children they’ve had taken away from them by authorities.
“The questions are not trauma informed,” said the anonymous official from the highly funded state, “and [they] are even aggressively trauma producing.”
“We can’t be no-barrier and take this [SAMHSA] money,” said Agus, identifying the GPRA requirement as the sole grounds for her organization’s rejection of the federal money.
Agus is on the front lines of closing the so-called treatment gap, the phenomenon wherein 8 in 10 opioid use disorder patients across the country had not received any past-year treatment at a hospital or rehabilitation facility. Part of the problem: Buprenorphine is inaccessible to patients, with 40 percent of all counties in 2020 not having a single medical practitioner authorized to prescribe it. For those who can, it’s underutilized, posing a problem for the recent expansion of prescribing eligibility by the Biden administration.
Accepting the money would mean pushing BHLI’s clients — Baltimoreans who are mostly Black, disabled, or unemployed; unstably housed; and “very sick and exhausted” — to tolerate a “ridiculously invasive” interview that’s longer than the organization’s 20-minute intake. Already, that length is “about all [clients] can take,” Agus noted. In contrast, the tool is estimated by SAMHSA to take 36 minutes, but service providers and state health department officials say it’s closer to lasting 45 minutes to an hour.
“Administration of the tool does take time,” an SAMHSA spokesperson recognizes, “but it can be integrated into patient-centered care in line with program goals.”
That’s not possible, according to Agus: “[Clients] really want to try treatment and get better, but they want it then, no-barrier,” she said. “If you don’t treat someone the second they walk in, you are never going to get them.” Every state official concurred that mandating the GPRA tool in low-threshold settings “defeats the purpose” of such programs, as one official articulated.
“It’s not feasible to use for low-barrier services,” said Laura Pegram, associate director of the Drug User Health team at the National Association of State and Territorial AIDS Directors, an organization representing health departments’ harm reduction programs. “The quicker and faster we can get bupe” — buprenorphine — “on demand, that’s what we want. But the intensive GPRA completely makes [low-threshold services] unfundable.”
Some low-threshold services have indeed accepted SAMHSA funds despite the requirements. A program coordinator working one such program on the East Coast, who requested anonymity due to employment restrictions, said their case manager tries to “push through it as quickly as possible”; after all, that’s all they can do.
But the coordinator said it “removes the whole purpose of a low-barrier program,” a sentiment shared by Agus and Pegram. The contradiction has had clear consequences: Some patients have stopped and left GPRA interviews — the provider estimates that an interview accounts for a whopping 80 percent of a first visit — while others walk out the door when they hear they’ll need to sit through a lengthy intake in order to get medication needed to relieve withdrawal symptoms. The program’s in-house intake can be completed in as little as five minutes, the coordinator said. In stark contrast to the SAMHSA spokesperson’s claim, the coordinator bluntly said, “This document is not client centered at all.”
“This document is not client centered at all.”
For the patients who do complete the questionnaire, the GPRA tool demands more of them even after they leave their first visit. SAMHSA requires grantees to administer it three or four times, depending on the grant, for each client. The agency spokesperson explains that “administering the tool more than once provides insight into how a client progresses through treatment or recovery.” But doing so for clients who are unstably housed and living in poverty is an impractical burden, said Agus.
Another service provider elsewhere in the country, who works at an organization receiving SAMHSA funds and who requested anonymity because of employment restrictions, confirmed this reality. “I have lots of clients who make contact and then don’t show for their next appointment, so the GPRA doesn’t get completed,” they said, describing the tool as a “waste of time.” “Sometimes they reach out months later for support again, and I try to complete GPRA then.”
SAMHSA seems to be well aware of the resource-intensive nature of the GPRA tool. Members of SAMHSA’s National Advisory Council for the Center for Substance Abuse Treatment, which administers the grants, called it a “pain in the neck” in February 2018 and a “significant burden on grantees” in March 2019.
It doesn’t have to be this way, though. The GPRA statute “doesn’t require that agencies collect any specific data or use any particular tool to do so,” explains lawyer Corey Davis, director of the Harm Reduction Legal Network, adding that “SAMHSA has a great deal of discretion in which data it requires grantees to provide and could modify those requirements to better reflect the needs of both grantees and people with [substance use disorder].”
The GPRA tool, Agus believes, is counterproductive to the whole point of the grants, to end overdoses and support people in managing or changing their relationship to drugs. “It’s so frustrating to have the resources tied up,” she said, “when the mission is to provide programs that are the most effective.”
Before new patients at SAMHSA-funded programs can get into treatment, they are expected to recount to staff how many times they’ve been “hit, slapped, or kicked” in the past month. Other questions on the GPRA tool ask if the trauma has been “so frightening, horrible, or upsetting” that the individual has experienced “nightmares,” been “constantly on guard, watchful, or easily startled,” or “[f]elt numb and detached.”
In the opinions of the state officials and service providers, this information is unnecessary to evaluate the program and is actively harmful to their patients. “I’m not sure what the purpose of it is for the ultimate assessment of the efficacy of the substance use disorder treatment program,” said a state official, who also made clear that “the critique is not that we shouldn’t be doing any data collection.” Likewise, the program coordinator of an SAMHSA-funded low-threshold service said, “I do think data is important and that it should be collected, but the extensive amount of useless data is ridiculous, and the questions are very stigmatizing and create an unpleasant experience.”
SAMHSA itself recognizes that “[a]nswering these kinds of questions can be difficult—and sometimes retraumatizing—for individuals with trauma histories,” as the agency wrote in a 2017 guide dedicated to trauma-informed interviewing for the GPRA tool. When asked about the questions’ purpose, the spokesperson said its “utility … is in knowing more about a client’s vulnerability in the face of substance misuse.” When pressed about the seeming discrepancy between that and the tool’s purpose for evaluating performance, the spokesperson added to their response that the question is used to “assess how programs alter a client’s social environment.”
“You’re using a really vulnerable population as guinea pigs to get information that goes nowhere.”
The apparently muddled purpose of the tool is not lost on those having to implement it. “You’re using a really vulnerable population as guinea pigs to get information that goes nowhere,” said Rachel Fitzpatrick, the former assistant director for managing the SAMHSA Opioid Response grant at the New York Office of Addiction Services and Supports. The SAMHSA spokesperson said that specific information, along with other outcomes, is reported to Congress and “other supervisory agencies.”
Other questions can make clients feel stigmatized, the officials and providers say. The National Academy of Sciences wrote in its 2020 consensus report that the question about having children removed from a client’s custody is “worded such that clients may feel ashamed or alienated from service providers.” The Academy instead suggests that SAMHSA reframe it around “the number of children still living with the client rather than the number for which they have lost parental rights.”
Stigmatization can be further found, officials and service providers say, in the question on past-month criminal activity. SAMHSA explicitly states in a note to the tool administrator that “using illegal drugs,” the very reason patients seek support, “is a crime.” Clients, then, are expected to recount every time they’ve used a drug, with the framework being that each time was a crime. As recognized by journalists, advocates, and the United Nations, the criminalization of drugs begets stigma, and the sources believe that bringing it up in a treatment context could rouse shame. The SAMHSA spokesperson said it’s an “important indicator of potential change in client behavior as a result of treatment.”
(SAMHSA’s statement about crime is factually incorrect. Drug possession is a federal crime, not its use, per se. The SAMHSA spokesperson was unable to provide a direct answer when asked for an explanation.)
If just one client has a bad experience, the officials warn, it might discourage others from seeking help. “Word of mouth spreads quickly. If people think every time you have to go through this, people won’t pursue it,” an official said.
Officials and providers who’ve sought a waiver of the GPRA tool have faced issues with SAMHSA. In July 2020, the agency told grant recipients that funds “will be placed on hold” if they don’t adequately comply with GPRA data collection, according to a report by the Government Accountability Office, a federal watchdog agency. Similarly, at least two state officials say they’ve been told that their grants could be jeopardized if they don’t satisfactorily conduct the GPRA tool.
“There’s a bureaucratic disconnect. [SAMHSA doesn’t] see the impact that it has,” said one of the officials. Likewise, the anonymous service provider described SAMHSA’s staffers as “people who don’t do the [on-the-ground] work.”
The SAMHSA spokesperson said the agency “regularly seeks feedback from anyone who wishes to contribute input,” which has included “specific question types … requests for additional questions, and … the tool’s structure and length.” They also claim that “clinicians or those with lived experience” have been involved in editing the GPRA tool.
With no apparent way out of the GPRA requirement, the officials and providers are calling for changes to the tool. And indeed, SAMHSA is presently “in the process of revising the current tool,” SAMHSA’s current leader, Tom Coderre, told The Intercept. “SAMHSA takes our mission to connect people to treatment for mental and substance use disorders very seriously. We will continue to look at ways to modernize the tools we use and improve efficiencies and reduce burdens on the people we serve every day.”
Fitzpatrick, the former New York official, would like to see the tool truly “brought up to speed” with trauma-informed best practices. A health department official from a different state recommended it be shortened and “community informed,” with “people with lived experience determining what’s useful.”
“The system does not adapt itself to make care accessible to folks. And that is outrageous.”
The National Academy of Sciences recommended in its 2020 report that SAMHSA “should implement a validated and psychometrically sound tool for assessing recovery among clients of its grant programs” since the GPRA tool, in particular, “does not elicit adequate data on the process of recovery.”
The GPRA tool is just one bureaucratic obstacle among many for substance use disorder service providers and clients, but its stakes are high. “The system does not adapt itself to make care accessible to folks. And that is outrageous,” said a health department official. “It’s time to rapidly move past things like the GPRA reporting tools that might turn some people away that are most vulnerable to overdosing and dying.”
In the meantime, it seems all that officials and providers can do is find a way to make do with a troubling bureaucracy. BHLI’s Agus is doing just that.
Her organization is also bringing buprenorphine into the Baltimore city jail, offering the medication with the financial support of the very burdensome SAMHSA money. That means anyone incarcerated there who wants access must first complete the GPRA interviews.
But in this case, Agus isn’t concerned that the required GPRA interviews will impede incarcerated patients from accessing the services. “We’re accepting our funding for behind the bars,” said Agus, “because [patients are] stuck there anyway.”
For Agus, it’s only possible to accept SAMHSA funding when a patient is stuck behind bars.