After Anand and Kourtney Torres, ages 41 and 29, were found dead in their Lake Ozark condo in November 2019, the community mourned the loss of the couple for months. Kourtney had been a nurse at the local hospital, and both were dedicated to coaching kids sports. Adding to the tragedy, they also left behind three young children. Nearly half a year later, the Camden County sheriff’s office revealed the cause of death: fentanyl-related overdose.

The toxicology results shocked Kourtney’s mother, Kris Benecke.

“She was so much more than just her tragic … she was about life,” she says. “She brought passion to everything. She was a nurse. I did not know her to be a drug user at all.”

Kourtney’s is the second opioid-related death in the family; Benecke’s son Justin died from a heroin overdose over a decade ago.

“I never expected it to happen once, and definitely not twice.”

It is an all-too-familiar story. In 2018, 1,132 Missourians died of opioid-related overdoses. Opioids include heroin, synthetic opioids such as fentanyl, and legal prescription pain relievers such as OxyContin, Vicodin, codeine, morphine, and others.

According to the National Institute on Drug Abuse, Missouri ranks 14th in the country in opioid deaths, with approximately 19.6 per 100,000 people. It’s a public health crisis that everyone pays for. By the most recent estimates, the Hospital Industry Data Institute claimed that the opioid epidemic cost Missourians $12.6 billion a year, or $34.5 million every day. That breaks down even further to an astonishing $24,000 per minute. According to a report from the institute, the costs associated with the opioid epidemic include increased consumption of healthcare, law enforcement, and social services, as well as lost productivity. By the time you finish this sentence, the epidemic will have cost another $399 dollars. Most deaths are clustered around the state’s urban centers, but rural counties are not immune, either. Nearly everyone knows someone whose life has been touched by opioid addiction.

The statistics are staggering. What can be done? What should be done? These questions have plagued state lawmakers for nearly a decade.

This is for patient safety, patient care, to identify those that are misusing so you can get them the help they need, and so you can potentially ID those getting prescriptions and diverting them. —Dr. David Barbe

One solution may be a statewide prescription drug monitoring program (PDMP). This digital medical record system tracks patients who fill opioid prescriptions and makes that information available to healthcare providers. Its uses are multiple—for example, when patients can’t report or remember their prescriptions, doctors can refer to a PDMP to prevent mixing medications that might result in accidental overdose. In relation to the opioid epidemic, it can be used to identify behaviors like doctor shopping and prescription history. PDMPs have been enacted in every state but Missouri, despite support by the Missouri Department of Health and Senior Services, Missouri Academy of Family Physicians, Missouri American College of Physicians, Missouri State Medical Association, Missouri Pharmacy Association, and the nation’s most trusted medical organizations, including the American Medical Association (AMA) and the National Institute on Drug Abuse. The Centers for Disease Control and Prevention calls these databases one of the most “promising state-level interventions” to improve opioid prescribing and patient care. But year after year, legislative PDMP efforts have been thwarted, making Missouri the lone national holdout.

“People ask me all the time, ‘You’re from Missouri. Why haven’t you all passed a PDMP?’ And the answer I give is that it has not made it through the Senate in a form that’s acceptable to the House,” says Dr. Randall Williams, the director of Missouri’s Department of Health and Senior Services. “I’m not pretending to be the expert on legislative intent, but my sense from my four years here is it’s not been one thing; it’s just been different things.”

Republican Representative Holly Rehder has sponsored a PDMP bill in the Missouri legislature for years.

“Over the years, PDMP has become a political football for both sides of the aisle. It doesn’t make sense. Missouri’s lack of a PDMP is a front row seat to politics at its worst,” she says. In 2018, Republican Governor Eric Greitens tried establishing a statewide PDMP via executive order, but the legislature refused to fund it.

A year earlier, the St. Louis County Health Department had launched a voluntary program available to any jurisdiction that wanted to participate. Today, more than 75 jurisdictions out of about 129 jurisdictions (counties plus several city jurisdictions) have opted in. Walmart, Walgreens, and Medicaid also track prescription history. Overall, around 85 percent of Missouri’s population is covered by some form of prescription drug monitoring, but it’s still a patchwork system.

So why not make an end run around the legislature and recruit the remaining counties that include the 15 percent of the population not covered yet? Many jurisdictions are afraid of being sued, Representative Rehder suspects. For example, Newton County officials voted to join the St. Louis County’s voluntary program, but then postponed implementation, planning to await the results of a lawsuit against St. Charles County by United for Missouri, a limited government advocacy group that claimed the program violated privacy. But Newton County officials changed their minds and decided to proceed.

The patchwork system is also far from ideal for healthcare providers like Dr. David Barbe, a family health practitioner with Mercy Clinic in Wright County.

“You can get certain pieces of info from one database and other pieces from PDMP, but that only applies to certain people. If that doesn’t scream at you, ‘we need a coordinated statewide PDMP,’ then nothing will,” says Barbe, who is also the former president of the American Medical Association. “Until we get all of the counties on, all of the pharmacies on, and all of the payers on, it won’t accomplish what we can accomplish for the patients. This is for patient safety, patient care, to identify those that are misusing so you can get them the help they need, and so you can potentially ID those getting prescriptions and diverting them.”

By diverting them, he’s referring to medications that get stolen or distributed to family and friends. A PDMP would help track unusual habits—people seeking multiple refills within a month or visiting multiple doctors to obtain prescriptions.

“The PDMP by itself doesn’t completely solve that but is best at identifying patients getting scripts from more than one provider, and you can use that to infer other things,” Barbe says.

His county, Wright County, has not opted into the St. Louis County PDMP, which means anyone can come there to fill prescriptions at a nonparticipating pharmacy without ever leaving a record of their opioid use patterns.

The current system’s weaknesses are a glaring problem to Jim Marshall, the founder of Cody’s Gift. “It’s not working if you’ve got a county next door that’s not using it,” he says. “It’s why Missouri has been one of the biggest states in prescription doctor shopping. The US Drug Enforcement Agency calls us the ‘pill mill’ of the United States.” Cody’s Gift is a nonprofit organization that primarily works in public schools to educate and prevent substance use disorders by raising awareness about mental health issues and alternative coping skills besides drug use. Marshall’s son, Cody, died in 2011 from an overdose.

Some emergency rooms see opioid-related problems during nearly every shift, from overdoses to drug-seekers. Dr. Howard Jarvis, the medical director of the emergency department of Cox Health in Springfield, says, “I can assure you that there are patients who are well aware of what pharmacies are participating and what pharmacies are not participating. We literally get patients from out of state coming here to get prescriptions filled. It’s an everyday problem. People sometimes tell me they’re getting prescription narcotics, and I look them up and can’t find evidence of it on the St. Louis County PDMP. It’s because they live in a municipality that doesn’t participate.” While Springfield and Greene County are currently enrolled in the St. Louis PDMP, five of its six adjacent counties are not.

PDMP opponents such as Republican Senator Denny Hoskins often question efficacy. “Just look at the data. Obviously, Missouri is the only state that does not have a statewide government prescription drug tracking system, and therefore you’d think that we would be number one in opioid-related deaths. However, we’re somewhere in the middle of the pack. Many of the supporters say the PDMPs will stop doctor shopping. Well, doctor shopping accounts for less than 5 percent of the people illegally obtaining opioids. The real reasons for the opioid crisis is we’ve seen an increase in deaths related to fentanyl. The PDMP has no effect on illicit fentanyl. PDMPs simply don’t work. At best, they focus on 5 percent of the problem and not the other 95 percent. I equate it to sticking a band-aid on a broken ankle and saying, ‘At least we did something.’ ”

Republican Senator Cindy O’Lauglin adds, “For those who despise PDMP, the main argument is the intrusion on personal decisions by outside interests and the state maintaining a database. On the other side, we do understand that doctors and pharmacies would like to know if a patient has been subscribed [sic] opioids before then issuing another prescription.”

While these medical databases are no magic bullet, there is evidence they can affect positive change. One year after New York required prescribers to check the state’s PDMP before issuing prescriptions, doctor shopping dropped by nearly 75 percent. In states like Connecticut and Rhode Island, doctors reported that PDMPs helped identify opioid drug abuse and intervene with patients who needed help. In Ohio, the National Institutes of Health credited the PDMP with reducing opioid-related deaths thanks to a 41 percent decrease in opioid prescriptions after implementation. Florida reduced oxycodone deaths by more than 50 percent after just two years with a PDMP. While encouraging, these numbers still don’t shift political opponents of PDMPs.

“When you get to a public policy discussion or debate, people use data to support whichever position they believe in,” says Dr. Williams, Missouri Department of Health and Senior Services. “Any time in medicine we try to prove something, the gold standard is a double-blinded, randomized controlled trial. That’s where you take a group of people and do something, take another group of people just like that group and don’t do it, and look down the road to see if there’s a difference in outcomes. With a PDMP, it’s very hard to find two populations that you can do that for. When you compare two states, you get into confounding variables, and different things might change other than just a PDMP.”

In short, correlation does not always equal causation. “Every year, people testify very much that PDMPs make a difference, and then other people get right up and produce data that says it doesn’t make a difference.” Dr. Williams explains that his department has chosen to support a PDMP based on the number of state medical associations and physicians asking for one. “We want to be responsive to our physicians’ opinions and give them every tool to help them individually with their patients, to help them prevent opioid abuse diversion and addiction and deaths.”

Of course, not every prescription leads to abuse, and plenty of patients responsibly manage pain with prescription opioids. The thought of additional policies and regulations sometimes sparks fears about access and harming the very people opioids are meant to help. Republican Senator Cindy O’Laughlin reports this “is a huge concern expressed by chronic pain patients” within her constituency.

“I don’t think it’s going to affect them at all,” says Jarvis, the Cox Health emergency department medical director. “Most people who require chronic opioids for cancer or other things like that, they’re usually getting those from a single prescriber. They’re not going to multiple places to obtain narcotics.”

Some argue that since PDMPs make prescription medications harder to access, people who abuse pills often turn to heroin or fentanyl, which is cheaper, easier to find, and far deadlier. In fact, Missouri’s recent surge in opioid deaths was largely due to the introduction of inexpensive, highly potent synthetic opioids like fentanyl. These numbers grew from 192 deaths in 2015 to 448 in 2016. In November 2019, more than 20 arrests were made relating to a drug trafficking ring accused of distributing heroin and fentanyl in Springfield. Kris Benecke suspects it may have been this ring who sold the drugs that took her daughter’s life. Would a PDMP take fentanyl off today’s streets? Of course not. But it might deter a future generation’s drug-using habits.

“To stop the problem, you have to limit the number of people who get addicted in the first place,” says Jarvis. “The PDMP is helpful. There’s no question. It’s just a tool. It’s not a panacea.”

Drug monitoring legislation has long been caught in the cogs of the Missouri state government. When initial efforts by Republican Senator Kevin Engler failed in 2012, it was largely due to vehement opposition led by Republican Senator Rob Schaaf, a family doctor who cited privacy concerns and described the proposal as “the heavy hand of government taking away your liberty.”

Even though the US Supreme Court ruled PDMPs constitutional in Whalen vs. Roe (1977) and the US Court of Appeals for the Ninth Circuit held that PDMPs do not inherently violate Fourth Amendment rights as recently as 2019, many Missouri legislators still cited concerns over privacy and voted no.

The current sponsor of the latest series of PDMP bills, Republican Representative Holly Rehder, is still optimistic about the debate’s slow progress. “We’ve really gotten somewhere in the last seven or eight years in regards to the stigma of addiction, but we still have a small handful of people who are just vehemently opposed,” she says.

We want to be responsive to our physicians’ opinions and give them every tool to help them individually with their patients, to help them prevent opioid abuse diversion and addiction and deaths. —Dr. Randall Williams

Further complicating the issue, opponents of PDMPs suggest a link between digital medical databases to the theoretical infringement of Second Amendment arms rights. The concerns aren’t entirely baseless—in 2013, Missouri Highway Patrol handed over a database of concealed weapons permit holders to a federal agent seeking links between disability claims and gun ownership. Even though the agent never actually used the files, according to the highway patrol, the story was used as evidence of database abuse in the hands of big government.

For frustrated doctors on the front lines, tying PDMPs to guns makes no sense. “It’s frightening,” says Jarvis. “There is no connection.”

While concerns over privacy, personal liberty, and even Second Amendment rights may be sincere, at its heart, opposition seems to stem from the long-held conservative penchant for personal responsibility. In the early days of PDMP legislation, Schaaf was widely criticized for saying about drug users, “If they overdose and kill themselves, it just removes them from the gene pool.”

In the medical community and for families of drug users, addiction is a medical crisis, not a moral failing. As Christa Harmon puts it, “I hate this term, ‘junkies.’ They are someone’s someone, and that matters.” For Harmon, founder and president of Mid-MO Addiction Awareness, desire for legislative action against the opioid epidemic is personal. Her daughter began abusing prescription opioids in high school. By her early 20s, she was seeking heroin in St. Louis. “It was pretty bad. I knew nothing. I knew nothing about it. I didn’t even know people did pills, snorted pills, I was clueless. It hit me like a brick wall.”

That feeling of cluelessness is why Harmon founded the organization. By breaking the stigma of silence around a family member’s drug abuse, she can at least encourage people to speak up and share information. Hers is just one organization out of many across the state that has stepped up to try to address the many layers of the opioid epidemic.

Jim Marshall, the father who lost his son and founded Cody’s gift, has spoken at hundreds of schools and conferences for the last nine years.

“You never know when a kid walks away from an assembly whether they’re going to make better choices or be more sympathetic to people in their families who have these issues,” he says. “I’ve been doing this for a long time and I have to think that one thing about kids that hasn’t changed is that they will listen to people like me who have a real story to tell.” All he can do is try.

“We have to start at the front end of the problem, where they get their drugs to start with,” he says. “Maybe if we shut the front door, we’ll prevent them from ending up as addicts or in jail when they walk out the back door,” he says.

But no one organization has the power or money that the legislature does to affect statewide change, and advocates say a PDMP shouldn’t be politicized. But again and again, it is.

“It’s an electronic medical record. It’s technology. At some point, it became a political banner, and a lot of lives have been harmed by that,” says Representative Rehder. She has been fighting for a PDMP since her first year in office in 2013. It’s an issue close to home. Her mother was addicted to prescription medications. Her stepfather was a dealer. Her sister used. Her cousin died of long-term drug abuse. And for over a decade, her own daughter struggled with drug abuse—an addiction that began with a legal prescription for Lorcet after an injury at age 17.

“I’ve been the bill’s sponsor for the last seven years and have really poured my heart and soul into it,” she says. “As a child growing up in it, as a mom trying to fight it, I’ve got a little more perspective than probably a lot of legislators.”

We have to start at the front end of the problem, where they get their drugs to start with, maybe if we shut the front door, we’ll prevent them from ending up as addicts or in jail when they walk out the back door. —Jim Marshall

For years, Rehder’s bills passed the House only to be rejected by the Senate. This year, she collaborated with Republican Senator Tony Luetkemeyer to craft a compromise with the conservative caucus of their party. HB1693 expanded privacy protections by restricting law enforcement access to data, deleted patient data every three years, and most controversially, assigned oversight to a privatized task force instead of the Missouri Department of Health and Senior Services. Though imperfect to House Democrats, it was still a PDMP, and in February, it passed 98-56. But once in the Senate, additional provisions to increase fentanyl penalties were added, upsetting the already fragile support from key House Democrats. This dissatisfaction surprised Rehder.

“These increased penalties had already passed on several other bills, so I never thought that this would become a problem,” Rehder recalls.

It was. Many Democrats, including House Minority Leader Crystal Quade, felt that they had made significant compromises to pass a PDMP that Republicans could support, but that the fentanyl penalty provisions were just too much. In a May 11 Facebook post, Democratic Representative Peter Merideth told constituents he’d already been on the fence with the initial negotiations, but that he’d opposed the language of the proposed fentanyl laws all year. “It would take an addict that possesses a substance that has been laced with any traceable amount of fentanyl (whether they knew it or not) and make them subject to a trafficking felony with a penalty equivalent to that of first-degree murder. Amazing that even in a bill that’s supposed to be about trying to help prevent addiction early, they can’t help but add massive over-criminalization of drugs at the same time.”

Sensing an opportunity to advance other, unrelated legislation, Democrats sent the bill back to committee for review. At best, it was a political maneuver. The plan backfired. The Senate was furious with what they referred to as “House shenanigans” and filibustered, killing the bill on the floor. The harsher penalties were added to another bill that was passed and signed into law anyway, but still no PDMP.

“We just ran out of time,” Rehder says. Her term limits are up in the House, although she’s running for a Senate seat in the November election. “It’s awful. It’s politics. It was just one thing after another. It was being used as a political football, and they killed it. It was just sad. Sad for the people of Missouri and for the families that have struggled with trying to fight this awful epidemic.”

It would be nice if all it took was a big burst of will power to kick an opioid addiction. But that’s just not how it works. Thanks to the history of addiction in her own family, Rehder understands that intimately. “With my DNA, it takes me one to three days to become addicted to something. My husband has no drug addictions in his family line, and he can take an opioid for a week after an injury and stop it immediately without any problems.”

Her point is everyone is different. At the height of dependency, addicts can rarely advocate for themselves. Too often, it’s the parents left behind to pick up the pieces. Some become activists, like Jim Marshall and Christa Harmon. Many just steel themselves and go on, coping with their grief in private silence.

In Camden County, Kris Benecke, who lost her son and daughter to drug overdoses and is now raising her 9-year-old grandson, had never even heard of prescription drug monitoring programs until this year, but she supports the concept now. Her county is not enrolled, although its two Republican representatives both voted in favor of HB1693. Her son died from a heroin overdose at age 19, but his drug use started in high school, when a friend shared prescription opioids stolen from his father’s medicine cabinet.

“If something like a PDMP had been in place, maybe there would’ve been a totally different outcome,” Benecke says. Maybe a doctor would have noticed a prescription was being refilled too soon.

Maybe.

Illustrations // Holly Kite