Monthly Archives: August 2014

Article Date:
August 22, 2014

Heroin’s got a stranglehold on Dane County, as it does on much of the rest of the country. There’s no more denying that we’ve got an epidemic on our hands. Now, what’s the solution?

Mount Horeb is the kind of small town that consistently makes those Best of Wisconsin lists, a charming community stretched lazily beneath a yawning blue bowl sky, nestled in the rolling hills and prairies of Dane County farm country. The kind of place where neighbors still don’t lock their doors and tourists descend by the busload to sip old-fashioned phosphates and snap photos of trolls carved from tree stumps. The village is known—officially—as the Troll Capital of the World. But unofficially, in recent years it’s picked up a far less desirable moniker: Mount Heroin.

“In 2011 we had what you’d call a perfect storm here,” says Mount Horeb Police Department detective Matt Kakuske, leaning back in an armchair in a quiet conference room at the station, Chief Jeff Veloff next to him, nodding. They tell me that’s the year heroin really hit, when, between the possession and selling arrests, overdoses, burglaries and thefts, heroin-related calls started siphoning “eighty to ninety percent” of the department’s resources. Suddenly the night shift was chasing kids who’d broken into cars and buildings; by sunrise phones rang off the hook reporting car windows smashed, propane tanks swiped from grills, copper electrical wire stripped from construction sites. “We had people stealing everything they could to be able to buy it,” says Veloff, the two recalling crazy scenes that became commonplace, like young parents passed out in public restrooms. One twenty-four-year-old made headlines when he overdosed, was revived, hospitalized and jailed overnight, then overdosed again the very next day. A three-time all-conference high school soccer star told NBC 15 he used to use heroin before games, that he had “five or six” dealers in Mount Horeb and that the users he knew were just like him, “good at a lot of things, talented, smart.” This is a town where stuff like that just doesn’t happen, and here it was happening, again and again and again.

But make no mistake, Mount Horeb isn’t special; it’s just the town with the name best suited to some twisted wordplay. All across the country this same brutal scenario is rapidly unfolding, spiking in 2011 and picking up steam ever since. It’s hard to pick up a newspaper today in any town, big or small, without finding a heroin-related story splashed across its pages. Since a lengthy investigation and subsequent dealer arrests, things have actually settled down a bit in Mount Horeb—although they have had one heroin overdose death this year. But they know the worst is far from over.

“From what our Dane County experts are telling us, 2014 is gonna surpass 2011 pretty easily,” shrugs Kakuske. “Right now we have the demand in the village but we don’t have the active big sellers. Where there’s a demand market, somebody’s gonna fill it in. It’s just a matter of time.”

Further up the road, Lieutenant Jason Freedman, commander of the Dane County Narcotics Unit for the city of Madison Police Department, tells the same story.

“This drug epidemic—and it is an epidemic—is far wider and broader and deeper than any other epidemic that I’ve dealt with in seventeen years in law enforcement,” says Freedman. We talk about Mount Horeb and he says yes, there, and Waunakee, and McFarland, and, of course, Madison, and just about everywhere. “There isn’t a single Wal-Mart parking lot in the county,” he says, where his people haven’t caught dealers slinging heroin since this whole thing blew up. Between 2000 and 2007, Wisconsin averaged about twenty-nine heroin-related deaths each year—but in 2013, there were 227. Perhaps even more sinister are the four to five thousand reported uses of Narcan that year, the shot that can temporarily reverse overdose by blocking opioids from attaching to receptors in the brain. In other words, deaths from heroin poisoning easily could have been in the thousands in 2013.

It’s a perfect storm, all right, and it brews on many different fronts—arguably the most turbulent of which is that so many of us still don’t get addiction. We just don’t see or understand or believe that addiction is a disease, a chronic and progressive brain disease, fatal if left untreated, compounded by stigma and shame, and even further complicated by its tangled relationship with mental health and the fragmented systems serving both. We think addicts should just try harder, be smarter, grow stronger, care more, so they can, simply, stop. But at some point for every addict—whether after years of abuse or that very first sip, toke, bump or hit—the choice to use stops being a choice. Brains are rewired, consequences stack up like prison bricks and free will evaporates. Using becomes a compulsion, then an obsession, no longer about morals or intelligence or willpower, if it ever even was. Take this baffling disease and combine it with crime and consequences and collective misunderstanding and pain and pride and plentiful but isolated resources and you’ve got that whopper of a storm, one that leaves so many people suffering, not actually believing that it can get better. That recovery is even possible. That life could be good again, infused with hope and peace, health and fulfillment, productivity and purpose. Because it can, it does, without a doubt, if you can find that help. It’s just hard to see the rescue crew through the blinding rain after that front rages through and you’re left, in shock, sifting through the wreckage.

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Skye Tikkanen’s one of those people who forces you to confront your own stereotypes about who an addict is, what an addict looks like. She’s got the sweetest, warmest voice, like a sugared tea with a dollop of cream. It’s so hard to imagine an addict boyfriend pulling that rich red hair, blackening those huge chestnut eyes. Hard to imagine her arrested seven different times or facing amputation of her leg because of an infection caused by complications of shooting heroin. Impossible to picture her performing CPR time and time again on her overdosing friend, who ultimately died alone in his car in a Wal-Mart parking lot anyway. Impossible to believe she made it out alive after nearly six years of active heroin addiction.

And back then, in the thick of it, it was equally impossible for Tikkanen herself to imagine the life she has today. Married to a fantastic man, a grateful mother to two adorable children. A professional, with a master’s degree, actually getting paid to fuel her own recovery by helping others recover all around her. It must be so hard for the cops and lawyers, she thinks, to see only addiction’s wreckage, day in and day out. She gets a front-row seat to the rebuilding.

“I meet people who come into my office for the first time and they’re desperate and they’re hopeless and they’re in withdrawal and they don’t even know if it’s possible to ever get better,” she says. “And almost every time I meet a new person, I let them know that it is. That I’ve got eleven years clean. I am living, breathing proof that recovery from heroin addiction is possible. And I think that’s a really powerful part of this that isn’t talked about enough.”

Tikkanen works at Connections Counseling, an outpatient alcohol and drug addiction and mental health clinic on Madison’s west side, where many of her colleagues are also people in long-term recovery. For some addicts, coming face-to-face with people like Tikkanen is the first time they feel understood instead of reviled, valued instead of discarded. She knows them because she’s been them, and while the example of her current self provides powerful hope, it’s that connection with her old self that gains their trust. Addicts are still a wildly misunderstood and sometimes mistreated bunch.

“I think all addiction comes from pain, that that’s at the root of every addiction that I’ve ever seen,” says Tikkanen. “With heroin addiction, there’s so often underlying trauma. Most of the clients that I see also have post-traumatic stress disorder and they are medicating it, or medicating their anxiety disorder, or panic disorder, with opiates. Because opiates are an effective medication for those disorders, for a while. Until they stop working. And then they ruin your life.”

It’s a dangerous thing to suggest, one that runs the risk of tempting teenagers suffering from depression or anxiety to give it a try, and she doesn’t do so lightly. But it’s the truth, and it’s an important one: Self-medicating an underlying disorder is an incredibly common phenomenon. So many recovering addicts report that discovering drugs and alcohol was the first time in their lives they felt normal, the first time they could breathe, the first time they found that missing piece.

“We’re not idiots, right?” says Tikkanen. “There’s a reason that we did this.”

And what goes unnoticed, says Tikkanen, is how often crimes are committed against active addicts, a group she calls a “vulnerable” population. Addiction takes you to some pretty dark places, places where some pretty bad things can and do happen. It’s especially backward, she says, when it’s women who experienced trauma as girls that went unreported, unrecognized and untreated.

“In our society, the abuse of a young girl is seen as deserving of our compassion and love. We prioritize them getting their needs met,” she says. “But if we miss it, if that little girl carries that secret with her until she becomes a teenager, often—not always, but often—she will start to use heroin. She will fall into prostitution. She will get sexually assaulted over and over and over again. And then we decide that she doesn’t deserve anything from us. That she doesn’t even deserve to live.”

These misconceptions are critical because without a compassionate understanding that addiction is a treatable disease requiring a multitude of support from a dozen different directions, people just give up on the idea of recovery—if they ever even seek it at all. And they really don’t dare to self-identify as addicts in need of help when they face so much shame over doing so.

“This is a chronic, relapsing condition,” says Tikkanen. “People with diabetes, when they don’t check their blood sugar and they eat a piece of pie and they have a diabetic episode, nobody says that it’s a failure of their treatment team. They don’t go to the hospital and say, ‘You’ve relapsed, what are you thinking, everything is a waste.’ Why do we do that with addiction? Addiction is, in addition to a brain disease, a learned behavior. It’s something that’s ingrained in people. And it takes some time to get it right.”

If Tikkanen could wave a magic wand, she’d conjure funding for sober living facilities, a critical component of staying sober not covered by insurance. Even just a few hundred bucks to get a recovering addict through those first few months until he or she can secure a job could make all the difference in the world to people starting over with gaping resume gaps, maybe even a criminal record. She’d also grant immunity to addicts who call 911 as a friend is overdosing, and she got to do just that as part of the 911 Good Samaritan Ad-hoc Committee. The eventual Good Samaritan law was one of seven bills passed unanimously by both state houses this year, a HOPE, or Heroin Opiate Prevention and Education, package authored by Representative John Nygren, R–Marinette, whose daughter Cassie celebrated one year of recovery from heroin addiction this June.

Finally, Tikkanen can’t say enough good things about the LifePoint Clean Needle Exchange program at AIDS Resource Center of Wisconsin. The center interacts with thousands of addicts through its free Narcan training and needle swaps, and every time—every time—they make contact, they ask, ‘Are you ready for treatment?’ What happens next, though, isn’t ideal.

“They are given a list of resources and then they make a whole bunch of phone calls, and in just that time, they can change their mind,” she says. “We are hoping that we can get some funding so that if that person says yes, there is a bed available for them that minute.”

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This gets me thinking about beds, and the availability of them, and just where do people start when they’re in crisis? Is it really a matter of finally saying “please help me” and the help sort of magically appears? I decide to sketch out a simple flowchart. If I have insurance plan A, then I call treatment facility B, that sort of thing. Then I’ll know which treatment providers and doctors to interview, give everybody fair play and give readers a handy chart, clean and simple, service journalism accomplished. Two hours later I’ve got a notepad slashed with scribbled-out starts and stops, more blank spots than answers, and my head is spinning. My God, I think. I’m being paid to figure this out with no particular pony in this race. Imagine if I was a parent whose nineteen-year-old has, maybe for only a few brutally triumphant hours, agreed to seek help?

I shove the keyboard aside and give Amy Mosher-Garvey a call. She’s a counselor at her own clinic, Open Door Center for Change, but for the past ten years she’s also chaired the Dane County Recovery Coalition (and its predecessor the Dane County Chemical Dependencies Consortium), an advocacy and information-sharing group of “too many to list” public and private-sector behavioral health professionals. I introduce myself, sheepishly tell her how confused I am, and why. “Can you be here tomorrow morning at 10:30?” she asks.

RELATED: A Q&A with addiction counselor Amy Mosher-Garvey 

By the time I arrive at her office the next morning, she’s organized a conference call with five other local experts. Todd Campbell, AODA manager for Dane County. Sue Moran from Journey Mental Health Center, the facility through which Dane County contracts all of its outpatient treatment services. Andrew Putney, medical director atMeriter NewStart. Norman Briggs from ARC Community Services for women and children. Ellen Taylor-Powell from the Safe Communities of Dane County’s Parent Addiction Network, an online educational resource center for parents, families and friends of individuals affected by drug use, abuse and addiction. PAN has also evolved to host an educational series where parents gain access to sheriff’s deputies, parole officers, medical and mental health treatment providers and other community services. Taylor-Powell, a retired UW Extension program development and evaluation specialist, lent those skills to the group of volunteers who launched PAN’s website last year. It’s been her job to bring all the information and resources into one place to make things easier for families in crisis, and, she admits, she could use a flow chart, too.

“Frankly, I’ve been at this for three or four years now, and I still find it kind of confusing and difficult to navigate,” says Taylor-Powell. “I feel like we have a lot of resources available, but there seem to be gaps, there seem to be blocks. And there are a lot of parents really struggling. Siblings, grandparents, folks who are peripherally involved, struggling and continuing to struggle.”

It makes me feel simultaneously better and worse. Listening to the people on the call, it’s clear there really are a whole lot of resources in Dane County. It just depends if you have insurance or not. And which insurance provider you have. And which particular plan you have within that provider. Or which partial or medically assisted insurance you have. Or which state or federally assisted insurance you have. Or how your deductible is structured. Or if you still don’t have insurance.

“The lack of an overall plan and the difficulty of access and the way the insurance plans have chopped up care in this area is completely bizarre to me,” says Meriter NewStart’s Putney. Before coming to Madison, from 2007 to 2011, Putney was director of a large, “level three” detox treatment center in Massachusetts. He says that while NewStart does have an inpatient consult service at Meriter Hospital, you can’t simply, say, show up in the ER for detox—not at Meriter or anywhere else. Unless there’s a secondary complicating factor, such as suicidal ideations or pregnancy or seizures, an acute care hospital bed is going to cost you about $2,700 a day, he says, “and most insurances in their right minds will not pay $2,700 a day for a $500-a-day service.”

Meanwhile, like other local health care providers and their contracted treatment services, NewStart offers various outpatient mental health and substance abuse services. But Putney remains frustrated by the lack of an overarching system so addicts don’t feel alone to fend for themselves.

“You sort of finish your care at one point and you’re told, okay, now your next care is available on that island over there. Have a good swim, look out for the sharks,” says Putney. “There’s no continuity of case management or supervision of somebody through the whole sort of trajectory that starts with detox, through treatment and into recovery.”

In contrast, in Putney’s prior work in Massachusetts, addicts—insured or not—came in to the facility for comprehensive triage. They immediately received medication-assisted detox in the form of tapering doses of methadone or Suboxone, plus medical monitoring for those first five or so days. Once the worst had passed, a team of nurses, addiction counselors and physicians facilitated planning steps, group meetings and one-to-one counseling sessions. There was a step-down unit where some stayed for up to a month and a dual-diagnosis unit where addicts with underlying psychiatric problems could immediately be transferred and treated. He’d love to see the same thing in Madison, but he admits his former program received “generous” public funding.

Around here, Dane County’s only detox facility on Madison’s south side does some of these things, but it’s much more oriented to treating alcohol-use disorders. Todd Campbell says since 2012, the county now guarantees four inpatient beds every Monday morning for qualified addicts and alcoholics. From detox, further care is contracted out to various nonprofit agencies, including Journey Mental Health, a specialty behavorial health provider serving about 450 insured, underinsured and uninsured adults. Journey offers outpatient substance abuse treatment programs and provides medication-assisted therapy, including Vivitrol and Suboxone—a lifesaving piece of the puzzle for many opiate addicts, although not without controversy. But Campbell says it’s a misperception that treatment begins with a bed, and both Journey’s Sue Moran and ARC Community Services’ Norman Briggs agree.

RELATED: What two local experts say about treating addiction with the powerful drug, Suboxone

“I would say five percent or under of the population really requires that kind of residential or inpatient treatment in order to begin recovery,” says Briggs, whose wraparound programs primarily serve women in poverty, but seems to serve them well; pre-treatment stabilization groups include court-appointed case management, addressing issues such as transportation and child care, and the day-treatment program is twenty-seven hours a week for four to six months. More important than inpatient treatment is what comes in the days, weeks, months and years that follow, particularly identifying and treating mental health issues—and just imagine if that weren’t considered a separate component anyway?

“I do think that integrating mental health and behavioral health with physical health is really the next step, and I think when that happens, we’ll see the funding change. We’ll see the priorities change,” says Moran. “It is very frustrating to work with a medical system right now that doesn’t understand addiction, doesn’t understand co-occurring disorders, and is really kind of in the dark ages as far as what we understand about the people we work with. And when that can change, it’ll be a much better place for everyone.”

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Lost in all of this is the history lesson on how it got so bad, so costly and so deadly, right here in our communities and right under our very noses. It defies imagination that a whole slew of people suddenly lost their minds one day and started shooting heroin. And that’s because they didn’t.

In America, we make up four percent of the world’s population but consume eighty percent of its prescription opioid supply. Here in Wisconsin in 2013, the state’s new Prescription Drug Monitoring Program captured 3,263,596 legal prescriptions for hydrocodone and oxycodone—brand names such as Oxycontin, Vicodin and Percocet—in a state of only 5.7 million people. As many as eighty-eight percent of today’s heroin users report starting with one of these drugs.

There are fewer than three thousand doctors certified in addiction medicine nationwide, and UW–Madison’s Randall Brown is one of them. He doesn’t admit it directly, but he’s a rare bird—double-board-certified in both family medicine and addiction medicine. He’s director of several programs, including the Center for Addictive Disorders at UW Hospital and Clinics, the Addiction Medicine Fellowship Program, and Overdose Prevention at the AIDS Resource Center’s LifePoint. He seems to have his hands in a little bit of everything, but to him it’s all related, just as addiction medicine and general medicine are critically so. Even within the medical community, it’s still not fully understood that addiction is a relapsing, remitting disease rife with other physical and mental health complications and best managed long-term with regular checkups, just like diabetes or high blood pressure—and who better to oversee it than a primary care doc? Unfortunately, psychiatry students are mostly the ones pursuing addiction medicine (not family, internal or emergency medicine students), and in numbers that barely scrape the surface of the need.

“Fifteen to twenty percent of Americans have a substance use issue at some point in their lives,” says Brown. “And if all of the graduates of medical school who trained in psychiatry specialized in addiction psychiatry, that would address less than one tenth of the current need.”

That’s why UW–Madison has responded with two fellowship programs. Brown is the founding director of both the med student track—one of the first nine programs like it in the country—that starts with two fellows this fall, as well as an advanced program that trains doctors in concert with psychologists and social workers to develop multidisciplinary leadership in the field. The hope is to not only expand the workforce, but to foster greater understanding and collaboration between addiction medicine specialists and all other physicians treating the general patient population.

All this begs the question: if there’d been more of this collaborative awareness before, would we be in this situation today? In the mid-1990s, Brown says, pain management teaching centered on responding to what patients reported. If they said they were in pain, most doctors believed they could and should prescribe opioids pretty much without dose limit or the worry of addiction. Sure, as with any drug, there probably were a handful swayed by pharmaceutical reps, but it’s not nearly the conspiracy some people imply. It makes much more sense that patients were in pain and their doctors responded with a “cure.”

“I think that led to this really broad variation in practice where some well meaning providers took that to heart, escalated doses, may or may not have been engaging in appropriate monitoring; likely a small subset were also using it to their financial advantage; and others continued to feel like, boy, you know, when patients end up on opioids, I see problems developing and I’m not comfortable with it,” says Brown. “And the reason there was all this variation in practice is there is essentially still no quality science out there to tell us what to do.”

Meanwhile, throughout the 1990s and 2000s teenagers—some prescribed pills for pulled wisdom teeth or sports injuries, others simply partying—started popping, crushing and snorting those innocent-looking little pills that must be safe, prescribed by the family doc, leading to a fresh generation essentially addicted to heroin before they’d even tried it. Because in 2010, after the pharmaceutical companies responded by reformulating their pills to make them much harder to abuse, they unwittingly pushed addicts to a cheaper, more effective opiate high; one Oxy might cost $40 to $60, while a hit of heroin might only be $20.

“I remember working with people that were addicted to Oxycontin during that time,” says Cory Divine, a colleague of Tikkanen’s at Connections. “Never did I hear, ‘Now would be an opportunity for me to get help.’ Ten out of ten times I would hear, ‘Well, now we’re gonna have to start using heroin.’”

That’s also where the crime comes in. There’s simply no honest way to afford a $200-to-$300-a-day habit and, once you’re addicted, you have a singular, life-or-death focus and a ruthless, crazy-making itch that simply cannot be scratched in any other way. You have two choices: get high, or get help. In some cases—maybe even for the lucky ones—the choice is made for you.

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Dane County Circuit Court Commissioner Todd Meurer is on his feet from the bench, applauding. He’s grinning warmly, robes bellowing, and the assistant district attorney is standing too, and the guy from the public defender’s office, and the coordinator from Journey, and they’re all giving a standing ovation to the woman with the short brown hair and the deep dimple that betrays her quick, proud smile, even though she tries to hide it by looking down at her feet. This is not what I expected today. None of this is what I expected.

There are twenty-five or so other offenders waiting their turn here in Meurer’s drug court, which happens every Tuesday morning. But this woman is going first because she’s graduating, and Meuer wants them all to see what that looks like. I know this because I just sat in on the hour-long meeting that also happens every week before court, where Meurer and the aforementioned ADA, Journey coordinator and public defender gather to go through each file, case by case. Who had a dirty urine drop this week? Who needs more attention from a case manager? Who would benefit from a different sort of treatment? Why does this kid keep getting in his own way? If we move to terminate this girl, will it motivate her to finally attend the recovery meetings like she’s supposed to? Who should we let go early today so the others see that’s what happens when you’re adhering to the program? Who needs to sit through the whole thing so they’ll see what happens when you don’t? Meurer makes a single cruller last the entire meeting, breaking it off into bite- sized pieces, chewing thoughtfully and listening as each of them strategizes and I sit there wondering, do the people out there waiting their turn know about this part? Do they know there’s a group on the other side of the wall that’s thinking about them as more than a number?

After, back in session, Meurer says, “Well, let’s start dismissing things.” The ADA moves to dismiss all charges and Meurer grants the motion. “Is that okay with you?” he laughs, then asks the woman to tell the court about her recovery journey. She thanks him for putting her in ARC, and also for imposing sanctions when she relapsed or lied along the way, including six nights in jail. She talks about how things changed when she finally embraced the resources before her, then each of the others take turns heaping her with very specific praise. “I’m so proud of you,” Meurer says, before leaving the bench to hug her and present her with a certificate. The courtroom applauds again.

Drug court is a relatively recent phenomenon; it started in Florida in the late eighties and now there are thousands across the country, including Dane County since 1996. There are currently three tiers of drug court here, and Meurer’s is essentially the mid-level one, the Drug Court Diversion Program. There’s also a high-risk Drug Court Treatment Program with court sessions under Judge Juan Colas on Thursdays, and then a low-level risk tier called deferred prosecution. After a defendant pleads guilty or no contest to a felony drug charge, Colas and the assigned trial judge review those cases and make the call on who goes where, with the help of Journey Mental Health screening. For the low-risk group, the ADA decides. Participants sign contracts and, if they successfully complete all of the requirements as this woman did, their charges are dismissed or reduced. Many of them not only avoid jail, they’re actually able to start and sustain recovery from addiction—remarkable, considering the reality of the “risk.”

“In actuality, what really constitutes a low-risk heroin user?” says James Sauer, substance abuse counselor for the low-risk Deferred Prosecution Opiate Initiative, a 2013 Wisconsin Department of Justice grant–funded subprogram intended to address the heroin epidemic. Sauer handles a caseload of fifty, working with each for an average of nine to fifteen months. “Most all of the individuals I work with have overdosed once, three times, eleven times. A few of them have been dead and brought back to life with several doses of Narcan. So when you talk about risk, really what’s being referred to is the risk for recidivism for crime and so forth. It’s not really based on the risk for life and death. If it were, that would be a whole ’nother story.” (A DOJ grant also led to the Jail-Opiate Project, in which willing prisoners receive a shot of Vivitrol upon release from Dane County jail, when they’re most at risk for deadly overdose.)

As in Meuer’s court, the potential felons who land on Sauer’s caseload arguably would not have committed these crimes if not for their addiction. This is not about avoiding consequences—it’s critical that lawbreaking addicts face up to what they’ve done and play a role in fixing it. Addressing their addiction by combining accountability and restitution with effective treatment protocols is often enough to not only save lives, but make those lives worth saving.

“There’s something here that’s really working,” says Sauer, who says he “loves these individuals,” that he’s so grateful for the work. But there are gaps, including a several-month delay between arrest and the start of drug court. And the invention of drug court, says Sauer, was born of a staggering necessity—and now it’s time for more inventing.

“The DA’s office, the public defender’s office, judiciary, counselors, other professionals, other agents, EMTs, all of us, parents who continue to struggle, parents who have lost children, we’re all seeing it,” says Sauer. “All across the country we’re struggling to develop a different response. What we have right now are good efforts, and it does work for some, but in the bigger picture it’s not enough.”

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It’s Farmers’ Market Saturday down on the Capitol Square and all the usual suspects are out in full force. An acoustic guitar lick rises and falls on a rush of hot summer breeze, leaving the mingled scent of fried cheese and loamy soil in its wake. The steady swirl of mid-morning patrons makes its slow, counter-clockwise pilgrimage through the holy land of weeping spinach bunches and spicy cheese bread, interrupted briefly at the jagged corners where activists gather to decry vivisectionists and urge us to stop all these bloody wars, now.

On one of the cross-vein sidewalks tucked up against the Capitol, a modest crowd of fewer than forty people has gathered for Let’s Rally Together Recovery Awareness, an event organized by United We CAN, or Change Addiction Now. First, CAN’s Wisconsin state director Lori Cross Schotten addresses the crowd, followed by Linda Lenz, holding a nuclear green “Stop Heroin WI” sign. Lenz founded Stop Heroin Now in response to losing her son, Tony, in 2013; the Facebook page already has more than eight thousand likes, and she now speaks all over the state. Both are moms-turned-activists desperate to let other parents know they aren’t alone as well as force policy change. It’s no accident they’ve chosen the steps of the state’s legislating body; in fact, Rep. Nygren was slated to speak today, but he had a family complication at the last minute. But most of the people here seem to know each other, a choir of preachers desperate to get the attention of the potential congregation that, literally, walks on by.

“We see awareness around a lot of other medical issues, and yet for some reason drug addiction isn’t the ‘feel-good cause’ so we’re not all talking about it,” says Jesse Heffernan, who’s made the trip from Appleton to emcee this event. Sure enough, around the corner today there’s a Lyme disease awareness rally going on with about four times the crowd. They’ve also got bright green signs and balloons bringing awareness to the 300,000 infected with that incurable disease every year. There are currently an estimated twenty-three million people struggling with addiction in the United States. “You don’t see ribbons everywhere and there aren’t marathons being run to ‘cure drug addiction,’” says Heffernan. “Hopefully we can start changing that.”

Heffernan introduces Douglas Darby and Anthony Alvarado, who started an organization called RISE TOGETHER. They comfortably pass the microphone back and forth and I recognize them, just as I do Lenz; I heard them all speak just a few weeks back in a suburban high school auditorium at a DOJ-sponsored event called Crisis in the Burbs. As part of its The Fly Effect project launched last year, DOJ has helped convene dozens of similar community listening sessions in which they gather law enforcement, EMS, treatment providers and recovering addicts, local to each town, to let them tell their own people, mostly neighborhood parents, just how bad the heroin problem is. The event I caught sold out four hundred tickets in advance, even though a similar one was held the week before in a nearby town. Today’s rally has nothing to do with the DOJ, but these guys take any opportunity they can get to get in front of people and tell their story.

“We’ve been traveling tirelessly all over the state of Wisconsin on our own money, broke, paying anything we can just to get the message out there because we believe—no matter what it takes,” says Alvarado. “Because we’re survivors. Six years ago I was living out of the back of my truck, almost dead. He’d just gotten out of prison. We’re very fortunate to even be standing here. To be thirty years old, twenty-nine years old, we’re very, very lucky to be in front of you. Because most people don’t make it through this addiction.”

During the 2013–2014 academic year, Darby and Alvarado carried this message to sixty-two different Wisconsin schools. They figure they’ve been in front of ten thousand kids. In tilted ball-caps and dark shades, covered in tattoos, these guys present a very different image than the traditional DARE cop. Their message isn’t one of “Just Say No, kids,” “Drugs are bad, kids.” It’s that drugs are delicious, actually, especially if you’re genetically predisposed as they were, or otherwise suffering as they were. Drugs and alcohol will feel like the answer. They’ll appear to be that rescuing knight in shining armor—until he suddenly guts you with his sword.

Alvarado and Darby’s personal stories of what it was like, what happened and what it’s like now are made-for-TV-worthy, and they tell them powerfully. But it’s not to glamorize or scare straight, and it’s not only to help us understand what’s needed in terms of policy change or to advocate for pre-treatment and post-treatment options. They want prevention-based programs. They want effective curriculum woven into the elementary and middle schools so that kids know, really know, that those pain pills from the dentist are really just expensive heroin in a pill. That there’s no such thing as an “overdose” of heroin because there’s no safe dose at all, there’s only drug poisoning. That the trial-and-error way of learning that’s the hallmark of all teenage brains is just way too dangerous when it comes to drugs and alcohol. That even for those not genetically enslaved by addiction, opiates are a powerful master—in 2011, 4.2 million Americans twelve and older reported they’d used heroin at least once in their lives; nearly a quarter of them, says the National Institute on Drug Abuse, became addicted. That, like Darby, even though you were never going to be a junkie like your dad, you could find yourself on the tenth anniversary of his suicide trying to hang yourself with your own pants in a prison cell, where your heroin addiction has left you dry and no longer high. Stripped of everything that ever mattered to you, including life.

“But today’s youth doesn’t have to go down that path. They don’t have to live in that shadow of addiction and bust their ass every day just to stay sober,” says Darby. “Nothing gets solved here today. Not one life is going to be saved except for maybe mine or the other addicts that are participating in this. For today, this keeps us clean and sober. And that’s what we do. We do more than just changing our people, places and things. We eat, breathe and sleep recovery. Why? Because we have to. There’s no other option for us.”

Addicts and parents turned activists is not a new phenomenon, but there does seem to be a remarkable number of them advocating for measurable change in recent years. With the help of a group of Madison-area volunteers, grieving parent Tom Meyer created Aaron’s House, a place where college-aged men live and work while focusing on recovery, named for the recovering addict son he lost—clean and sober—in a 2005 car accident. The unaffiliated but closely related women’s version, Connect House, opened in August 2013, and UW–Madison’s Pres House got on board just this fall. Their shared goal is to build recovery communities on campuses nationwide and to create spaces that not only support recovering addicts, but encourage them to live more visibly so that those still struggling see that there’s help—the same goal shared by the new UW–Madison student organization Live Free, the recently established Madison chapter of Young People in Recovery, and others intent on, as Meyer puts it, “changing the conversation.”

“It’s kind of disappointing when you watch the news or you read about all the bad stuff and it’s like, yes, it’s important to see who’s died from this disease, but it’s also important to see that there’s help, you know?” says a twenty-one-year-old Madison native and recovering heroin addict named Anne, who doesn’t want to spend a whole lot of time talking about how awful her addiction was (it was), or whether she cheated or stole (she did), or whether she was a victim of crime herself (she was, but don’t you dare call her a victim). She really just wants to move forward today, to revel in her recovery and to help others find theirs. She says things really started to turn around for her when she discovered the thriving sober community around her she didn’t know existed, including at Horizon High School (Dane County’s only recovery high school and one of only sixteen in the country; “It saved my life”), counseling and support groups, regular attendance at twelve-step meetings, and Madison’s Forward Learning Youth and Young Adult program (FLYY).

“I think there’s not enough talk about the hope and recovery and all the programs and stuff,” says Anne. “There is hope.”

It’s the same mantra back here at the Capitol rally, where, in its final moments, we’re led through a moment of silence for all the people this crowd knows that they’re losing, or have been lost, to heroin. One by one, they call out names—“Joe, Miranda, Jason”—and with each name I scratch a hatch mark on my notepad. It’s gone deathly quiet save for some muffled crying, punctured only by the gut punch of each name as it rings out. I’m sharing a bench with one other guy and he’s watching my notepad out of the corner of his eye, finally leaning over to inquire in a whisper what count I’ve got.

“Eighty-five,” I answer, swallowing hard. More than two names for every one person gathered, spoken over only a three-minute period.

Toward the end, a family with young children approaches and I think they’ve come to listen, but they’re just taking a quick shortcut back to the farmers’ market stands. One little girl holding hands with her mom stares curiously back at us as she trips forward, confident in the direction her mom is leading her. The guy next to me leans back over and I know what he’s going to say before he says it, because I’m thinking it, too.

“Could even be her, in a few years.”

I swallow again as she turns back around, watch her tiny shoulder blades fade until she’s fully enveloped into the pulsing crowd, pushing forward in its comforting, predictable current. I let the rally leave me behind as the attendees climb three steps toward the Capitol, form a circle and hold hands. They begin to chant something I can’t quite hear as I pack up my stuff, slip away toward the farmers’ market crowd, aiming for the spot that absorbed that little girl. Let the river of people carry us both home.

Maggie Ginsberg-Schutz is a frequent contributor to Madison Magazine.

September is National Recovery Month. Events include “Rockin Recovery Rally” on Sept. 13, 11-2 p.m., at the state Capitol and Prescription Drug Take Back Day on Sept. 27, 10-2 p.m., at area collection sites. For more information and resources visit parentaddictionnetwork.org.