This article by Maggie Ginsberg originally appeared in the December 2021 Edition of Madison Magazine. To view the original article, click here.
Last year, 1,227 Wisconsinites died from opioid overdoses, up from 916 in 2019 and nearly double the number from 2014. In 2020, calls to Dane County Emergency Services reporting suspected opioid overdoses went up 23% over 2019, and 123 people died — partly because people felt isolated during the pandemic and were more likely to use alone. That increased rate has continued throughout 2021. To those gathered tonight, these aren’t faceless numbers. Each flag represents someone’s child, parent, grandparent, partner, sibling, cousin or friend. People who were here, who were loved, who are gone, just like that.
Down on the sprawling grass leading toward Lake Monona, a microphone waits for a lineup of speakers while half a dozen tents shade the sponsoring organizers and participants. The Wisconsin Recovery Advocacy Project is here, drawing attention to a policy platform that includes calling on lawmakers to restore the portion of the 911 Good Samaritan Law that reverted last year so that it no longer protects an overdosing person from arrest. The African American Opioid Coalition of Dane County is also here, working to address the fact that, although community sentiment took a more compassionate turn toward treatment versus incarceration after the opioid epidemic ravaged white suburban communities, communities of color are still overincarcerated for drugs of all kinds — and Black individuals in Dane County are dying from opioid poisonings at an alarmingly higher rate.
Two tents down, staff members from ARC Community Services are handing out free boxes of the lifesaving overdose-reversal drug naloxone, better known by its brand name, Narcan. Among the Centers for Disease Control and Prevention’s 10 evidence-based strategies for preventing opioid overdose, targeted naloxone distribution is listed first. They’re also giving out hard-to-come-by fentanyl test strips — even though possessing them is technically illegal because they’re considered “drug paraphernalia” under state law (another thing the Recovery Advocacy Project wants to change) — because they want to empower people to test their substances before using. Measures like this are what’s known as harm reduction — “a set of practical strategies and ideas aimed at reducing negative consequences associated with drug use,” according to the National Harm Reduction Coalition — and it’s steering nearly every organization’s efforts here today.
Lethally potent and profoundly addictive, fentanyl now permeates the local drug supply, showing up in everything from heroin to cocaine and meth to cannabis, and even in counterfeit prescription pain pills. In 2014, 10% of opioid overdose deaths in Dane County involved fentanyl or other synthetic opioids. By 2017, that portion had grown to more than half.
In 2020, it exploded to 86%.
Fentanyl has not only made drug use deadlier (2 milligrams, or the equivalent of several grains of sugar, is considered a lethal dose), it’s also causing accidental overdoses in substances rarely associated with overdoses in the past.
In May 2019, fentanyl-laced marijuana was responsible for the fatal overdose of C.J. Tubbs, son of Charles Tubbs, Dane County’s director of emergency management systems. This was part of the impetus, Dane County Executive Joe Parisi will explain in a later phone call, for the push to create the Behavioral Health Resource Center that opened in November 2020 and the newly announced Crisis Triage Center for which Parisi has set aside $10 million in his 2022 budget. “Because even someone as connected as Charles Tubbs and his family found themselves in situations with their son … late at night … having a behavioral health challenge … not really sure who to call,” Parisi says.
Tubbs speaks at this event, his tone somber as he describes his wife finding their beloved son’s body when she went to wake him for dinner. It marked the end of a long and troubled journey for family members, who struggled with how best to help, as so many do. “In my professional career, I’ve delivered that death notice to families probably hundreds and hundreds and hundreds of times,” Tubbs tells the crowd. “I never thought I would experience it myself.”
It’s an all too familiar story for those gathered at Olbrich Park — you never think it will happen to you or your loved one, until it does. They’re here to listen, to collectively mourn, to grapple for answers and look for comfort among people who get it — and to find hope in the efforts on display. As overwhelming as it feels — and as impossible as it would be to provide a comprehensive picture of all of the organizations across Dane County that are working hard on this issue — a few groups are making headway with new approaches to the old, painful, wildly complex issue we now call substance use disorder.
The Rise of Peer Recovery Coaches
“I really started to see it, feel it, in January 2021. I felt like every day I was losing somebody, either personally or professionally, either to COVID, to a drug poisoning or to suicide,” says Tanya Kraege, a crisis clinician at Journey Mental Health and a peer recovery program manager at Safe Communities. In addition to factors like fentanyl and the impact the pandemic had on things like job and housing insecurity, Kraege speculates that when the vaccines arrived and the shutdowns began to lift, people who’d been living with unaddressed trauma came out of survival mode and endured an overwhelming rush of emotions. Kraege saw people with multiple years in recovery return to using — a sort of delayed response to a long year of isolation, a lack of control, and an inability to access in-person support groups and treatment providers.
But at the same time, Kraege had a front-row seat to the rise of the peer recovery coach movement, a relatively new model that represents a bright spot in recovery efforts. Peer support specialists or recovery coaches are trained and often certified community members who share their own experiences with substance use disorders. “The power of peer support is their lived experience,” Kraege says. “They get to speak a little bit more freely when it comes to self-disclosure than I as a clinician could do. To be able to say, ‘I’ve been there. I’ve walked in similar shoes. And I’m here to walk alongside you.’ ”
Safe Communities first piloted peer recovery coaches at SSM Health St. Mary’s Hospital – Madison in 2016 with a project called Emergency Department to Recovery, or ED2Recovery. If someone landed in the emergency room after a drug poisoning, they could choose to meet someone with shared lived experiences. If they said yes, Safe Communities sent a peer support coach to the hospital to serve as a trusted guide through whatever that person needed next. Nobody knew what to expect. One ER doctor said he would have been happy with a 25% or 30% success rate — but 90% of participants became connected to treatment options after getting out of the hospital.
Since then, not only has ED2Recovery expanded to include every hospital emergency department in Dane County, Safe Communities has also developed even more peer support programs that Dane County now funds (after a proposed $100,000 increase in 2022) at a level of $500,000 per year. Those programs are called Jail2Recovery, a partnership with Dane County Jail and Journey Mental Health Center for those currently or recently incarcerated; Diversion2Recovery, for people going through drug court, OWI court or pre-arrest diversion programs; All2Recovery, which connects peer coaches with existing organizations such as Centro Hispano of Dane County, JustDane or OutReach LGBTQ+ Community Center; Pregnancy2Recovery, which includes a coach who is also a doula; and TRC2Recovery, for those in treatment centers who request continuing support (in 2022, the latter three are combining to form Communities2Recovery). Safe Communities now employs 18 peer providers, including one devoted exclusively to working with affected family members. In 2020, Kraege says peers provided 5,649 service hours. By October 2021, service hours had already doubled to 11,888.
“We want to meet people in the community, meet them where they’re at,” says Kraege, listing places like parks, coffee shops, shelters and libraries. From there, it’s whatever they want — maybe accompanying them to a recovery meeting or one of Madison’s four state licensed centers for Medications for Addiction Treatment, or MAT, or helping with things like job applications and housing. Or maybe it’s just to talk — especially with someone they identify with.
Here in Dane County, where Black people are overdosing on opioids at a rate of 73.8 per 100,000 as compared to 21.1 per 100,000 for white people, one group in particular — the African American Opioid Coalition, or AAOC — is hiring peer recovery coaches who look like the people they’re trying to reach.
Culturally Specific Recovery Efforts
“What we need right now is more recovery coaches looking like them, which we’ve been able to do,” says Charlestine “Ms. Charlie” Daniel, Safe Communities Diversity and Inclusion Manager, Falls and Drug Poisoning Prevention Program Coordinator and the founder of AAOC. Since 2017, the AAOC’s primary focus is improving the overall wellness of Black families by educating and raising awareness about opiate addiction — including hiring Black peer recovery coaches. “We are African Americans talking to African Americans,” she says.
Although she hasn’t experienced substance use disorder herself, Daniel founded the AAOC out of love for her community and, she admits, frustration. Although everyone agrees that families coming forward to help humanize the opioid epidemic throughout the 2010s was a good and brave thing that led to policy changes and public awareness, it also made something else painfully clear.
“We have African Americans who are still in prison for crack cocaine, and they were never, never offered treatment,” Daniel says, describing how it felt to watch the public rally around high-profile examples of affluent white people with substance use disorder over the past decade. “Who was doing this work with African Americans?” Daniel says. “There was no voice for us. And so the AAOC became the voice for our community.”
It’s a response echoed by every source interviewed for this story, including Parisi.
“When the opioid epidemic began, it was a predominantly white epidemic,” says Parisi. “And it’s really an unfortunate commentary that it took that for the nation in general to really start to view drug addiction as an illness and people who are addicted to drugs as people for whom we should have compassion. And, you know, it’s really, on every level, inexcusable.”
Further, Parisi says that drug laws and attitudes toward addiction that pre-date the opioid crisis led to longer prison sentences. “There are people sitting in [prison] today because they were addicted to the ‘wrong’ kind of opioid,” he says.
Meeting with elected officials like Parisi and other policymakers and stakeholders is one of the core components of the AAOC, which Daniel says now has about 25 members. “We have a prominent doctor, we have lawyers, recovery coaches, nurses, you name it,” she says. “It is culturally specific. Our main focus is to improve the overall wellness of Black families when it comes to this disease.”
Daniel also partners with the Dane County Sheriff’s Office to organize the Med Drop Sundays program, making her rounds to different Black churches and collecting parishioners’ old or unused medications. She hands out free medical lockboxes and gives presentations to raise awareness — often to grandparents raising grandchildren because of the drug epidemic — about how their prescriptions can be stolen, sold or used recreationally.
“We are always putting families first because it’s not only the person who is in recovery that’s affected, it’s the family, especially if children are involved,” she says. Despite the disproportionate overdose rates for Black individuals in Dane County — and despite the distrust of white systems and the stigma that remains, not only surrounding addiction but around asking for help — Daniel sees the AAOC already making a difference. “I have seen more African Americans in recovery than ever,” she says.
Public Health Madison Dane County supervisor Dr. Jill Denson became a member of the AAOC shortly after she began attending the state’s overdose fatality review sessions in 2020, where she really became aware of the disproportionate impact of overdose in Black communities.
“Although white people use opioids more, it’s really Black people who are dying from it more often,” says Denson. She says the message still isn’t reaching the full community, such as older Black people who’ve never used heroin but are now dying from fentanyl poisoning when they use cocaine. “We need to reimagine our harm reduction outreach and education to communities that probably think they don’t need that,” says Denson, noting that substance use disorder can cycle through and create damage across generations of families. Education, awareness and empathy are key because you know someone who is struggling, whether you realize it or not. “No matter where you live, no matter who you are, substance abuse affects every single community. It’s professionals, people who are working, who have homes, who have families. It’s anybody you can think of: your neighbor, somebody in your house,” says Denson. “People can keep those things very, very private, very secretive, because of the stigma and shame.”
Harm-Reduction Tools and the Role of Trauma
Denson’s duties include overseeing Dane County’s Syringe Services program, which provides clean, sterile needles and syringes, safe disposal of sharps, some wound care supplies and the distribution of naloxone — “harm reduction tools,” according to PHMDC Chronic Disease Specialist Kathy Andrusz and Disease Intervention Specialist Heidi Olson-Streed, who both work with the program. “These are very basic tools and they help people keep themselves safe,” says Andrusz.
Helping people use drugs safely might seem counterintuitive, but the evidence supports it. Syringe services programs are included in the CDC’s top 10 list, which says, “Nearly 30 years of research shows that comprehensive [syringe services programs] are safe, effective and cost-saving, do not increase illegal drug use or crime, and play an important role in reducing the transmission of viral hepatitis, HIV and other infections.”
PHMDC’s syringe services program began with needle exchanges in 1996 to fill gaps and support the pioneering efforts of the needle exchange (and, more recently, naloxone access) program of the AIDS Resource Center of Wisconsin (formerly AIDS Network and now Vivent Health). But skyrocketing overdoses and a broader population of “more inexperienced or casual drug users” due to fentanyl have driven demand, and PHMDC’s program has become more comprehensive. In addition to distributing tools, Andrusz and Olson-Streed regularly help people solve immediate needs, or simply serve as sounding boards.
“Day to day for our participants, it’s terrifying. There is no safety net for people who are suffering, who are traumatized,” says Olson-Streed, adding that although underlying trauma often causes people to turn to substance use as a coping tool, the consequences of drug use can trigger new, compounding traumas such as housing and food insecurity, incarceration, watching friends die and lack of health care. She says in a perfect world, there would be housing first — “How do you get your life together when you don’t even have a place to sleep where you feel safe?” — and treatment on demand, not only when a person needs it but in the way that they need it. “Not everyone can take a month, two months off from life to recover,” she says.
Andrusz says true harm reduction would also make MAT more available and give people a place to go at the moment they’re seeking recovery. “Even with the primo health insurance that public employees receive in Dane County, there’s still a waiting period for medical recovery services,” she says. “Treatment on demand, even for the most ‘privileged,’ doesn’t exist.”
Olson-Streed says the pandemic has made all of this worse. People are more isolated, more desperate, managing more trauma. She says research has proven that the longer a person is engaged in treatment, the more success they will have — but nobody overcomes addiction without help, and the historical reliance on abstinence-based programs is no longer enough. “It’s a very complex issue, it’s a brain issue, and it’s not always a matter of, ‘Well, just go to these meetings for a couple hours every night after work and, when you feel you need to use, just grit your teeth and get through it,’ ” she says.
Still, while addiction is a chronic problem, people’s lowest points are only moments — moments Olson-Streed works to help them get past. “Whenever a person comes in and wants me to close the door of my office, I know I’m going to hear about something that is traumatic,” she says. “And the only thing I can do, other than refer them to resources, is just listen as a human being with another human being.”
Supporting Multiple Pathways to Recovery
Rebecka Crandall agrees that trauma is at the root of nearly all behavioral health challenges, including substance use disorder — and the trauma doesn’t stop with use itself and its consequences, but extends to formal systems, including treatment providers and jails.
“I think it would be helpful if the community and family members and treatment spaces recognized that treatment trauma is real and valid,” says Crandall, who serves as coordinator of the Hope Project, a program that provides comprehensive opioid treatment services for 50 woman-identifying individuals at no cost to them (made possible by a 2018 state grant). Of those 50 participants in 2021, 57% are people of color, 63% have housing insecurity, more than half receive or qualify for disability and 77% are justice-involved. Most, says Crandall, have some sort of negative experience with prior efforts at recovery but, with the tragic exception of two overdose deaths at the start of the pandemic, most Hope Project participants are still engaged in the program to varying degrees. The Hope Project is flexible, culturally sensitive and acknowledges “body, mind and spirit,” which means something different to each participant — and that’s OK.
“We’re not here to force healing on somebody or force abstinence or force change that they’re not ready to commit to, because that doesn’t work,” says Crandall. “If stigma and sanctioning people was an effective approach to substance use, we wouldn’t be where we are now in this mess.”
The Hope Project is housed within ARC Community Services, a nonprofit services agency operating residential, outpatient and intensive day treatment programs for women, transgender and nonbinary individuals, where counselors are certified in both mental health and addiction. Although ARC’s services are primarily abstinence-based, the Hope Project has no such parameters — and that’s key, says Skye Boughman, a licensed professional counselor who used to work at Safe Communities, where she founded the recovery coaching program; now she’s at ARC trying to combine traditional treatment models with the peer support concept. “It’s a way to bring the treatment system to the people as opposed to having the people have to get to the treatment system,” Boughman says.
That system, she says, remains difficult to access. Residential inpatient facilities are expensive and there still aren’t enough of them; people with insurance still face long waitlists because there aren’t enough beds. And although those with BadgerCare now can get treatment services at residential centers through Medicaid coverage for the first time ever, BadgerCare still doesn’t cover room and board — and the waitlists are even worse. “We’ve had people waiting for, like, eight months. People are dying on waitlists all the time,” Boughman says. There are other barriers, too, such as long intake processes or the requirement that participants not use any substances at all, from medical cannabis to treatments like Suboxone (the brand name for a combination medication containing buprenorphine and naloxone) and methadone. Boughman says that abstinence-only pathways are “incredibly valid” options for some people — but when they’re presented as the only option, too many people are excluded. “I think that abstinence-only models [can be] incredibly harmful to a lot of my community and have increased fatal overdoses across the board,” she says.
Fighting Stigma and Shame to End Overdose
Back at the overdose awareness rally at Olbrich Park, where Boughman and Crandall are handing out Hope Project brochures and those boxes of naloxone and fentanyl testing strips, Kraege is pulling her child in a wagon and Daniel is handing out medical lockboxes; the professional and personal feelings have blurred. The gathered crowd is the choir to which they already preach, and it’s a relief not to have to explain for just one night — to already speak a common language, however anguishing it may be.
Judge Everett Mitchell, who presides over Dane County’s high-risk drug court, steps up to the mic. He tells the crowd that he has been in recovery from alcoholism for 15 years. “I always try to share that wherever I go because there’s so much stigma attached to the fact of use disorder,” he says. He points out Dane County Sheriff Kalvin Barrett in the crowd, thanks him for being here and says they’re going to continue to build a good relationship, because he wants to change the fact that when people go to the Dane County Jail, they aren’t allowed to bring any MAT such as Suboxone or methadone. It’s a prohibition that public health experts say significantly increases the chance of overdose upon release. (MAT is No. 2 on the CDC’s evidence-based strategies list, and research shows it reduces mortality in opioid use disorder by 50%. See page 68.) It’s critical that we aren’t “punishing people extra” because of their addiction, Mitchell says, stressing that every aspect of their humanity is important. When people come before his bench, he celebrates their sober time; he tries to encourage them by demonstrating what recovery can look like.
“I tell my drug court participants that I’m not your judge,” Mitchell says. “I’m your reflection.”
Barrett, who has been milling through the crowd all night, listening to people talk and collecting naloxone to bring back to his deputies, says that the proposed consolidated jail project would include a medical ward that could make MAT possible. Right now, given the current, outdated facilities, the only treatments in use — nonaddictive, opiate-antagonist injections of naltrexone (brand name Vivitrol) administered prior to release — are not considered narcotics, so they are not subject to as rigorous a regulatory process as Suboxone and methadone would be. Additionally, the Vivitrol program is only available due to a federal grant that includes support from a nurse and social worker, but it is set to expire. In the two years since receiving the grant, Dane County Jail has administered 262 injections. This fall, Barrett also testified in support of Wisconsin Assembly Bill 317, which called for “[evaluating] the appropriateness of medication-assisted treatment” when people are convicted of operating while intoxicated.
“We’re not going to arrest our way out of the issues that we have in society, like addiction and mental health,” Barrett says in a later phone call. “Our City-County Building was built in the 1950s, was designed at that time to do one thing, and that was to punish and to be harsh. We are no longer in that mindset in the criminal justice system. We are about rehabilitation and providing resources and programming to help reduce recidivism that leads to a reduction in crime rates, which leads to an increase in public safety. So that is the ultimate goal. We are here to help. We want to serve. But we need not only the funding; we need the resources to be able to do that and be successful.”
Former Wisconsin Badgers and NFL running back Montee Ball takes the mic. Ball, who is in long-term recovery from alcoholism and is now a certified peer recovery coach, tells of suddenly losing his lifelong best friend to an opioid overdose. “I had no idea he was even struggling with opioids. This guy, every single day, had a smile on his face,” Ball says, reiterating — as all of the speakers do, and as the faces of this crowd reflect — that addiction and overdose can happen to anyone. Any age, any race, any background, any gender, any socioeconomic status.
Tim Togstad approaches the microphone. “Three years ago yesterday, my stepson, Colin, died of an overdose. His flag is out there with so many others,” he says. There is no worse feeling, but Togstad has found some relief in the local chapter of GRASP — Grief Recovery After Substance Passing. He feels less alone, even though the monthly meetings have moved to virtual spaces like so many of the other support groups, recovery meetings and behavioral health appointments. It’s something that has made all of this so much harder — further isolating people at a time when they need connection most. Still, that connection makes a difference. “Grief must be witnessed to just help you move through it,” Togstad says. “Just to process everything that you’ve been through.”
Finally, it’s time for an observed moment of silence. Afterward, one of the Safe Communities certified peer specialist and recovery coaches, Kay Hauser, closes out the ceremony as organizers hand out candles.
“I can’t tell you why my name isn’t on one of these beautiful memorial flags,” Hauser says. “But I can tell you why I’m standing here at this event today: We do recover.”
One by one, candles in hand, crowd members disperse into the darkening night and begin a slow and final walk through the flags. When each finds the flag that brought them here, they place their candle at its base and release the grief. They take all the time they need.
Tonight is for remembering, for mourning.
Tomorrow, the work continues.