KHN’s ‘What the Health?’: Open Enrollment, One More Time

Keeping a campaign promise, President Joe Biden has reopened enrollment for health coverage under the Affordable Care Act on healthcare.gov — and states that run their own health insurance marketplaces followed suit. At the same time, the Biden administration is moving to revoke the Trump administration’s permission for states to impose work requirements for some adults on the Medicaid health insurance program. Alice Miranda Ollstein of Politico, Kimberly Leonard of Business Insider and Rachel Cohrs of Stat join KHN’s Julie Rovner to discuss these issues and more. Also, Rovner interviews medical student Inam Sakinah, president of the new group Future Doctors in Politics.

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An estimated 9 million Americans eligible for free or reduced premium health insurance under the Affordable Care Act have a second chance to sign up for 2021 coverage, since the Biden administration reopened enrollment on healthcare.gov and states that run their own marketplaces followed suit.

Meanwhile, Biden officials took the first steps to revoke the permission that states got from the Trump administration to require many adults on Medicaid to work or perform community service in exchange for their health coverage. The Supreme Court is scheduled to hear a case on the work requirements at the end of March.

This week’s panelists are Julie Rovner of Kaiser Health News, Alice Miranda Ollstein of Politico, Kimberly Leonard of Business Insider and Rachel Cohrs of Stat.

Among the takeaways from this week’s podcast:

  • The Biden administration said it will promote the special enrollment period, a stark change from the Trump administration, which dramatically limited funding for outreach. But navigator groups, whose workers help individuals find and sign up for coverage, say they haven’t yet heard whether the federal government will be offering to pay them to help people during this three-month sign-up period.
  • The House appears poised to pass a bill next week that would fund the covid relief measures President Joe Biden is seeking, as well as major changes to the ACA. Senate staffers are working with the House to align legislation from both chambers as much as possible. With little or no Republican support and only razor-thin majorities in both the House and Senate, Democrats will need to find common ground among their caucus to push the bill through.
  • Congress has a firm deadline on the covid relief bill since many current programs, such as the expanded unemployment funding, expire March 14.
  • CVS announced this week that its insurance subsidiary, Aetna, will be participating in the ACA marketplaces in the fall, another sign that those exchanges are growing in acceptance.
  • The Biden administration’s effort to walk back Medicaid work requirements appears to be an effort to head off the arguments at the Supreme Court. Democrats fear that even if they stop the program through administrative action now, a high-court ruling saying the effort was legal could open the door for future Republican administrations to restore work requirements.
  • The federal government is pushing hard to get more covid vaccine shots in arms around the country and last week reported that 1.7 million doses had been distributed. But it is a race against the emerging threat of covid virus variants, which are even more contagious than the original coronavirus.
  • Among hurdles in the vaccination effort is hesitancy among certain groups to get the shot. There have been reports that 30% of military personnel refused to accept the vaccine and some high-profile athletes in the NBA don’t want to be in public service announcements promoting it. Groups opposed to vaccines in general are posting misinformation online that may also be a source of concern.
  • The latest controversy over New York Gov. Andrew Cuomo’s policies on counting deaths among nursing home residents with covid-19 has consumed Albany and led to inquiries by legal authorities. It also raises questions about whether politics — Cuomo, a Democrat, and President Donald Trump regularly sparred about covid policies — influenced public health decisions.

Also this week, Rovner interviews medical student Inam Sakinah, president of the new group Future Doctors in Politics.

Plus, for extra credit, the panelists recommend their favorite health policy stories of the week they think you should read, too:

Julie Rovner: Stat’s “Hospitals’ Covid-19 Heroics Have Them Poised for Power in the New Washington,” by Rachel Cohrs

Rachel Cohrs: KHN’s “As Drug Prices Keep Rising, State Lawmakers Propose Tough New Bills to Curb Them,” by Harris Meyer; and Stat’s “States Still Can’t Import Drugs From Canada. Now, Many Are Seeking to Import Canadian Prices,” by Lev Facher

Alice Miranda Ollstein: Politico’s “How Covid-19 Could Make Americans Healthier,” by Joanne Kenen

Kimberly Leonard: The New Republic’s “The Darker Story Just Outside the Lens of Framing Britney Spears,” by Sara Luterman

To hear all our podcasts, click here.

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Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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Are Public Health Ads Worth the Price? Not if They’re All About Fear

Public service announcements about drug use or other public health problems often fall short, public health marketing experts say, because they incite people’s worst fears rather than giving people solutions.

ST. LOUIS — The public service announcement showed a mother finding her teenage son lifeless, juxtaposed with the sound of a ukulele and a woman singing, “That’s how, how you OD’d on heroin.”

It aired locally during the 2015 Super Bowl but attracted national attention and has been viewed more than 500,000 times on YouTube.

“You want to tap into a nerve, an emotional nerve, and controversy and anger,” said Mark Schupp, whose consulting firm created the ad pro bono. “The spot was designed to do that, so we were happy with it.”

But like other ads and PSAs seeking to move the needle on public health, it went only so far.

Marketing experts say public health advertising often falls short because it incites people’s worst fears rather than providing clear steps viewers can take to save lives. They say lessons from opioid messaging can inform campaigns seeking to influence behavior that could help curb the coronavirus pandemic, such as wearing masks, not gathering in big groups and getting a covid-19 vaccine.

The Super Bowl ad was produced and aired by the St. Louis chapter of the National Council on Alcohol and Drug Abuse using $100,000 from an anonymous donor. Then-director Howard Weissman said a top priority for his group was for Missouri to start a prescription drug monitoring program.

Five years later, Missouri remains the only state without a statewide program. And the number of opioid deaths has steadily increased in that time, state data shows, up from 672 in all of 2015 to 716 deaths in just the first six months of 2020.

The national council, now called PreventEd, is one of many nonprofits and government agencies that invest millions in messaging aimed at curbing the opioid epidemic. People who study such advertisements said it’s difficult to measure their impact, but if the metric is the number of overdose deaths, they have not yet succeeded. The country set a record for overdose deaths in 2019 that it was on pace to break in 2020.

“You have to give them a solution, especially in a health context, like with opioids, because similar to with cigarette smoking, if you increase fear and don’t give a solution, they are just going to abuse more because that’s their coping mechanism,” said Punam Anand Keller, a Dartmouth College professor who studies health marketing.

To address public health issues, marketers often use images of diseased lungs to discourage smokers or the bloody aftermath of car crashes to prevent drunken driving. But these can provoke “defensive responses” that may be avoided by giving people ways to take action, said a 2014 International Journal of Psychology review of campaigns that use fear to persuade people.

Missouri’s state health and mental health departments, with the help of federal funds, spent at least $800,000 on advertising in 2019 to curb the opioid epidemic through their Time 2 Act and NoMODeaths campaigns, according to data from advertising agencies and partner organizations.

Mac Curran, a 34-year-old social media influencer, described his struggles with opioid addiction in a number of videos for Time 2 Act, one of which was viewed more than 100,000 times on Facebook. In another recent video, Curran used storytelling to highlight the benefits of getting treatment for his addiction. He talked about strangers cheering for him when he returned to a friend’s streetwear store after getting out of the recovery program, and discussed how he learned coping skills he could use throughout life.

Jay Winsten, a Harvard University scientist who spearheaded the U.S. designated-driver campaign to combat drunken driving, described Curran’s videos as “really excellent because he comes across as genuine and well spoken. People remember stories more than they do someone simply lecturing at them.”

Still, Winsten emphasized the importance of including actionable steps and would like to see Missouri and other groups focus on teaching friends of users “how to intervene and what language to use and not to use.”

Others, including the libertarian Cato Institute, argue that PSAs on drug use just don’t work and point to the history of failed campaigns to discourage teen marijuana use.

Yet agencies keep trying. Missouri’s mental health department and the Missouri Institute of Mental Health at the University of Missouri-St. Louis convened focus groups in 2019 with drug users and their families and captured their words on billboards for the NoMODeaths campaign. One said, “Don’t give up on treatment. It’s worth the work,” and gave a number to text for help with heroin, fentanyl or pill misuse.

In addition to giving information, the goal was “to let people who use drugs know that other people care if they live or die,” said Rachel Winograd, a psychologist who leads the NoMODeaths group aimed at reducing harm from opioid misuse.

She said she understands the argument that PSAs are a waste of money, given that organizations like hers have limited funds and also try to provide housing for those in recovery and naloxone, used to revive people after overdoses.

But, Winograd said, some of the advertisements appeared to work. The organization saw a big increase after the ads ran in the number of people who visited its website or texted a number for information on treatment or obtaining naloxone.

Although federal funding rose for fiscal years 2021 and 2022, Winograd’s team and state officials decided to cut NoMODeaths’ advertising budget in half and instead spend the money on direct services like naloxone, treatment and housing.

Now health agencies are consumed by the coronavirus pandemic and are trying to craft messages that cut through politically charged discourse and get the public to adopt safety measures such as wearing masks, staying physically distanced and getting vaccinated.

Convincing people to wear masks has been difficult because messages have been mixed. Missouri’s health department has tried to depoliticize mask-wearing and get people to view it as a public health solution, said spokesperson Lisa Cox.

But Missouri Gov. Mike Parson has appeared without a mask at public events and has declined to enact a statewide mask mandate. He also said at a Missouri Cattlemen’s Association event in July, “If you want to wear a dang mask, wear a mask.”

Cox would not comment on whether Parson’s approach undermined the state’s public health efforts, but Keller said it did.

Missouri’s messaging about vaccines has been much more straightforward and clear. A website provides facts and answers to common questions as it encourages people to “make an informed choice” on whether to get the shots.

Keller praised the “unemotional, not-fear-arousing” approach to the vaccine messaging issued so far.

“It needs the right messengers: well-known individuals who have high credibility within specific population groups that currently are hesitant about taking the vaccine,” Winsten said.

This time, Parson has been one of those messengers. When he announced the launch of the vaccine website in November, he said in a news release: “Safety is not being sacrificed, and it’s important for Missourians to understand this.”

In spite of the politicization of the virus crisis, Winsten, who serves on the board of advisers of the Ad Council’s $50 million covid vaccine campaign, has “guarded optimism” that enough people will get vaccinated to curb the pandemic.

And he remains hopeful that PSAs could eventually help reduce the number of people who die from opioids.

“Look at the whole anti-smoking movement. That took over two decades,” he said. “These are tough problems. Otherwise, they would be solved already.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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Patients Struggle to Find Prescription Opioids After NY Tax Drives Out Suppliers

The tax was touted as a way to generate funding for treatment programs across the state. But to avoid paying, scores of manufacturers and wholesalers stopped selling opioids in New York.

NEW YORK — Mike Angevine lives in constant pain. For a decade the 37-year-old has relied on opioids to manage his chronic pancreatitis, a disease with no known cure.

But in January, Angevine’s pharmacy on Long Island ran out of oxymorphone and he couldn’t find it at other drugstores. He fell into withdrawal and had to be hospitalized.

“You just keep thinking: Am I going to get sick? Am I going to get sick?” Angevine said in a phone interview. “Am I going to be able to live off the pills I have? Am I going to be able to get them on time?”

His pharmacy did not tell him the reason for the shortage. But Angevine isn’t the only pain patient in New York to lose access to vital medicine since July 2019, when the state implemented an excise tax on many opioids.

The tax was touted as a way to punish major drugmakers for their role in the opioid epidemic and generate funding for treatment programs. But to avoid paying, scores of manufacturers and wholesalers stopped selling opioids in New York. Instead of the anticipated $100 million, the tax brought in less than $30 million in revenue, two lawmakers said in interviews. None of it was earmarked for substance abuse programs, they said.

The state’s Department of Health, which has twice this year delayed an expected report on the impact of the tax, did not respond to questions for this story.

The tax follows strong efforts by federal and New York officials to tamp down the use of prescription opioids, which had already cut back some supply. Now, with some medications scarce or no longer available, pain patients have been left reeling. And the law appears to have missed its target: Instead of taking a toll on manufacturers, the greater burden appears to have fallen on pharmacies that can no longer afford or access the painkillers.

Among the companies that no longer sell opioids in New York is Epic Pharma. Independent Pharmacy Cooperative, a wholesaler, confirmed it no longer sells medications subject to the tax, but still sells those that are exempt, which are treatments for opioid addiction methadone and buprenorphine and also morphine. AvKARE and Lupin Pharmaceuticals said they do not ship opioids to New York anymore. Amneal Pharmaceuticals, which manufactures Angevine’s oxymorphone, declined to comment, as did Mallinckrodt.

Since the tax went into effect, Cardinal Health, which provides health services and products, published an extensive 10-page list of opioids it does not expect to carry. Cardinal Health declined to comment.

The New York tax is slowly gaining attention in other states. Delaware passed a similar tax last year. Minnesota is assessing a special licensing fee between $55,000 and $250,000 on opioid manufacturers. New Jersey Gov. Phil Murphy proposed such a tax this year but was turned down by the legislature.

The company that makes the first point of sale within New York pays the tax. That isn’t always the drugmaker. It can mean wholesalers selling to pharmacies here are assessed, explained Steve Moore, president of the Pharmacists Society of the State of New York.

Independent Pharmacy Cooperative said about half its revenue from opioid sales in New York would have gone to taxes.

Mark Kinney, the company’s senior vice president of government relations, said the law is putting companies in a very difficult position.

When wholesalers like IPC left the opioid market, competitive prices went with them.

Without these smaller wholesalers, it’s hard for pharmacies to go back to other wholesalers “and say, ‘Hey, your prices aren’t in line with the rest of the market,’” Moore said.

Indeed, nine independent pharmacies told KHN that when they can get opioids they are more expensive now. They have little choice but to eat the cost, drop certain prescriptions or pass the expense along.

“We can trickle that cost down to the patient,” said a pharmacist at New London Pharmacy in Manhattan, “but from a moral and ethics point of view, as a health care provider, it just doesn’t seem right to do that. It’s not the right thing to ask your patient to pay more.”

In addition, Medicare drug plans and Medicaid often limit reimbursements, meaning pharmacies can’t charge them more than the programs allow.

Stone’s Pharmacy in Lake Luzerne was losing money “hand over fist,” owner Leigh McConchie said. His distributor was adding the tax directly to his pharmacy’s cost for the drugs. That helped drive down his profit margins from opioid sales between 60% and 70%. Stone’s stopped carrying drugs like fentanyl patches and oxycodone, and though that distributor now pays the tax itself, the pharmacy is still feeling the effects.

“When you lose their fentanyl, you generally lose all their other prescriptions,” he said, noting that few customers go to multiple pharmacies when they can get everything at one.

If pharmacies have few opioid customers, those price hikes have less impact on their business. But being able to manage the costs is not the only problem, explained Zarina Jalal, a manager at Lincoln Pharmacy in Albany. Jalal can no longer get generic oxycodone from her supplier Kinray, though she can still access brand-name OxyContin. New York’s Medicaid Mandatory Generic Drug Program requires insurers to provide advance authorization for the use of brand-name prescriptions, delaying the approval process. Sometimes patients wait several days to get their prescription, Jalal explained.

“When I see them suffer, it hurts more than it hurts my wallet,” she said.

One of Jalal’s customers, Janis Murphy, needs oxycodone to walk without pain. Now she is forced to buy a brand-name drug and pays up to three times what she did for generic oxycodone before the tax went into effect. She said her bill since the start of this year for oxycodone alone is $850. Lincoln Pharmacy works with Murphy on a payment plan, without which she would not be able to afford the medication at all. But the bill keeps growing.

“I’m almost in tears because I cannot get this bill down,” she said in a phone interview.

Several pharmacists raised concerns that patients who lose access to prescription opioids may turn to street drugs. High prescription prices can drive patients to highly addictive and inexpensive heroin. McConchie of Stone’s Pharmacy said he now dispenses twice as many heroin treatment drugs as he did a year ago. Former opioid customers now come in for prescriptions for substance use disorder.

Trade groups and some physicians and state legislators opposed the tax before it went into effect, voicing concerns about a slew of potential consequences, including supply problems for pharmacists and higher consumer prices.

New London Pharmacy said one of its regular distributors stopped shipping Percocet, a combination of oxycodone and acetaminophen. Instead, the pharmacy orders from a more expensive company. The pharmacist estimated that a bottle of Percocet for which it used to pay $43 now costs up to $92.

“Even if we absorb the tax, we’re not getting a break from reimbursements either,” a pharmacist who spoke on the condition of anonymity explained, adding that insurance reimbursements have not increased in proportion to rising drug costs. “We’re losing.”

Latchmin Raghunauth Mondol, owner of Viva Pharmacy & Wellness in Queens, has also seen that problem. The pharmacy used to be able to purchase 100 15-milligram tablets of oxycodone for $15, but that’s now $70, she said, and the pharmacy is reimbursed only about $21 by insurers.

Other opioids are just not available.

Mondol said she has been unable to obtain certain doses of two of the most commonly prescribed opioids, oxycodone and oxymorphone — the drug Angevine was on.

After Angevine lost access to oxymorphone, his doctor put him on morphine, but it does not give him the same relief. He’s been in so much pain that he stopped going to physical therapy appointments.

“It’s a marathon from hell,” he said.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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Pandemic Presents New Hurdles, And Hope, For People Struggling With Addiction

Relaxed regulations in response to the pandemic means more access to addiction treatment medications. But recovery programs are accepting fewer people, and the danger of overdose remains high.

Before Philadelphia shut down to slow the spread of the coronavirus, Ed had a routine: most mornings he would head to a nearby McDonald’s to brush his teeth, wash his face and — when he had the money — buy a cup of coffee. He would bounce between homeless shelters and try to get a shower. But since businesses closed and many shelters stopped taking new admissions, Ed has been mostly shut off from that routine.

He’s still living on the streets.

“I’ll be honest, I don’t really sleep too much,” said Ed, who’s 51 and struggling with addiction. “Every four or five days I get a couple hours.”

KHN agreed not to use his last name because he uses illegal drugs.

Philadelphia has the highest overdose rate of any big city in America — in 2019, more than three people a day died of drug overdoses there, on average. Before the coronavirus began spreading across the United States, the opioid overdose epidemic was the biggest health crisis on the minds of many city officials and public health experts. The coronavirus pandemic has largely eclipsed the conversation around the opioid crisis. But the crisis still rages on despite business closures, the cancellation of in-person treatment appointments and the strain on many addiction resources in the city.

When his usual shelter wasn’t an option anymore, Ed tried to get into residential drug treatment. He figured that would be a good way to try to get back on his feet and, if nothing else, get a few good nights of rest. But he had contracted pinkeye, a symptom thought to be associated with the virus that leads to COVID-19, so the evaluation center didn’t want to place him in an inpatient facility until he’d gotten the pinkeye checked out. But he couldn’t see a doctor because he didn’t have a phone for a telehealth appointment.

“I got myself stuck, and I’m trying to pull everything back together before it totally blows up,” he said.

Rosalind Pichardo wants to help people in Ed’s situation. Before the pandemic, Pichardo would hit the streets of her neighborhood, Kensington, which has the highest drug overdose rate in Philadelphia. She’d head out with a bag full of snack bars, cookies and Narcan, the opioid overdose reversal drug.

She’d hand Narcan out to people using drugs, and people selling drugs — anyone who wanted it. Pichardo started her own organization, Operation Save Our City, which initially set out to work with survivors of gun violence in the neighborhood. When she realized that overdoses were killing people too, she began getting more involved with the harm reduction movement and started handing out Narcan through the city’s syringe exchange.

When Pennsylvania’s stay-at-home order went into effect, Pichardo and others worried that more people might start using drugs alone, and that fewer first responders would be patrolling the streets or nearby and able to revive them if they overdosed.

So, Pichardo and other harm reduction activists gave out even more Narcan. A representative for Prevention Point Philadelphia, the group that operates a large syringe exchange program in the city, said that during the first month of the city’s stay-at-home order, they handed out almost twice as much Narcan as usual.

After the lockdowns and social distancing began, Pichardo worried that more people would be using drugs alone, leading to more overdoses. But Philadelphia’s fatal overdose rate during the pandemic remains about the same as it was this time last year. Pichardo said she thinks that’s evidence that flooding the streets with Narcan is working — that people are continuing to use drugs, and maybe even using more drugs, but that users are utilizing Narcan more often and administering it to one another.

That is the hope. But Pichardo said users don’t always have a buddy to keep watch, and during the pandemic first responders have seemed much more hesitant to intervene. For example, she recently administered Narcan to three people in Kensington who overdosed near a subway station, while two police officers stood by and watched. Before the pandemic, they would often be right there with her, helping.

To reverse the overdoses, Pichardo crouched over the people who she said had started turning blue as their oxygen levels dropped. She injected the Narcan into their noses, using a disposable plastic applicator. Normally, she would perform rescue breathing, too, but since the pandemic began she has started carrying an Ambu bag, which pumps air into a person’s lungs and avoids mouth-to-mouth resuscitation. Among the three people, she said, it took six doses of Narcan to revive them. The police officers didn’t step in to help but did toss several overdose-reversal doses toward Pichardo as she worked.

“I don’t expect ’em to give ’em rescue breaths if they don’t want to, but at least administer the lifesaving drug,” Pichardo said.

In her work as a volunteer, she has reversed almost 400 overdoses, she estimated.

“There’s social distancing — to a limit,” Pichardo said, “I think when someone’s life is in jeopardy, they’re worth saving. You just can’t watch people die.”

Even before Philadelphia officially issued its stay-at-home order, city police announced they would stop making low-level arrests, including for narcotics. The idea was to reduce contact overall, help keep the jail population low and reduce the risk of the virus getting passed around inside. But Pichardo and other community activists said the decreased law enforcement emboldened drug dealers in the Kensington neighborhood, where open-air drug sales and use are common.

“You can tell they have everything down pat, from the lookout to the corner boys to the one actually holding the product — the one holding the product’s got some good PPE gear,” said Pichardo.

More dealers working openly on the street has led to more fights over territory, she added, which in turn has meant more violence. While overall crime in Philadelphia and other major cities has declined during the pandemic, gun violence has spiked.

Police resumed arrests at the beginning of May.

Now when she goes out to offer relief and hand out Narcan, Pichardo packs a few extra things in her bag of supplies: face masks, gloves and gun locks.

“It’s like the survival kit of the ’hood,” she said.

For those struggling with addiction who are ready to start recovery, newly relaxed federal restrictions have made it easier to get medications that curb opioid cravings and stem withdrawal. Several efforts are underway among Philadelphia-based public health groups and criminal justice advocacy organizations to give cellphones to people who are homeless or coming out of jail, so they can make a telehealth appointment and get quicker access to a prescription for those medicines.

During the pandemic, people taking medication-assisted treatment can renew their prescription every month instead of every week, which helps decrease trips to the pharmacy. It is too soon to know if more people are taking advantage of the new rules, and accessing medication-assisted treatment via telehealth, but if that turns out to be the case, many addiction medicine specialists argue the new rules should become permanent, even after the pandemic ends.

“If we find that these relaxed restrictions are bringing more people to the table, that presents enormous ethical questions about whether or not the DEA should reinstate these restrictive policies that they had going in the first place,” said Dr. Ben Cocchiaro, a physician who treats people with substance-use disorder.

Cocchiaro said the whole point of addiction treatment is to facilitate help as soon as someone is ready for it. He hopes if access to recovery can be made simpler during a pandemic, it can remain that way afterward.

This story is part of a partnership that includes WHYY, NPR and Kaiser Health News.

They Fell In Love Helping Drug Users. But Fear Kept Him From Helping Himself.

Sarah and Andy fell in love while working to keep drug users from overdosing. But when his own addiction reemerged, Andy’s fear of returning to prison kept him from the best treatment.

She was in medical school. He was just out of prison.

Sarah Ziegenhorn and Andy Beeler’s romance grew out of a shared passion to do more about the country’s drug overdose crisis.

Ziegenhorn moved back to her home state of Iowa when she was 26. She had been working in Washington, D.C., where she also volunteered at a needle exchange — where drug users can get clean needles. She was ambitious and driven to help those in her community who were overdosing and dying, including people she had grown up with.

“Many people were just missing because they were dead,” said Ziegenhorn, now 31. “I couldn’t believe more wasn’t being done.”

She started doing addiction advocacy in Iowa City while in medical school — lobbying local officials and others to support drug users with social services.

Beeler had the same conviction, born from his personal experience.

“He had been a drug user for about half of his life — primarily a longtime opiate user,” Ziegenhorn said.

Beeler spent years in and out of the criminal justice system for a variety of drug-related crimes, such as burglary and possession. In early 2018, he was released from prison. He was on parole and looking for ways to help drug users in his hometown.

He found his way to advocacy work and, through that work, found Ziegenhorn. Soon they were dating.

“He was just this really sweet, no-nonsense person who was committed to justice and equity,” she said. “Even though he was suffering in many ways, he had a very calming presence.”

People close to Beeler describe him as a “blue-collar guy” who liked motorcycles and home carpentry, someone who was gentle and endlessly curious. Those qualities could sometimes hide his struggle with anxiety and depression. Over the next year, Beeler’s other struggle, with opioid addiction, would flicker around the edges of their life together.

Eventually, it killed him.

People on parole and under supervision of the corrections system can face barriers to receiving appropriate treatment for opioid addiction. Ziegenhorn said she believes Beeler’s death is linked to the many obstacles to medical care he experienced while on parole.

About 4.5 million people are on parole or probation in the U.S., and research shows that those under community supervision are much more likely to have a history of substance use disorder than the general population. Yet rules and practices guiding these agencies can preclude parolees and people on probation from getting evidence-based treatment for their addiction.

A Shared Passion For Reducing Harm

From their first meeting, Ziegenhorn said, she and Beeler were in sync, partners and passionate about their work in harm reduction — public health strategies designed to reduce risky behaviors that can hurt health.

After she moved to Iowa, Ziegenhorn founded a small nonprofit called the Iowa Harm Reduction Coalition. The group distributes the opioid-overdose reversal drug naloxone and other free supplies to drug users, with the goal of keeping them safe from illness and overdose. The group also works to reduce the stigma that can dehumanize and isolate drug users. Beeler served as the group’s coordinator of harm reduction services.

“In Iowa, there was a feeling that this kind of work was really radical,” Ziegenhorn said. “Andy was just so excited to find out someone was doing it.”

Meanwhile, Ziegenhorn was busy with medical school. Beeler helped her study. She recalled how they used to take her practice tests together.

“Andy had a really sophisticated knowledge of science and medicine,” she said. “Most of the time he’d been in prison and jails, he’d spent his time reading and learning.”

Beeler was trying to stay away from opioids, but Ziegenhorn said he still used heroin sometimes. Twice she was there to save his life when he overdosed. During one episode, a bystander called the police, which led to his parole officer finding out.

“That was really a period of a lot of terror for him,” Ziegenhorn said.

Beeler was constantly afraid the next slip — another overdose or a failed drug test — would send him back to prison.

An Injury, A Search For Relief

A year into their relationship, a series of events suddenly brought Beeler’s history of opioid use into painful focus.

It began with a fall on the winter ice. Beeler dislocated his shoulder — the same one he’d had surgery on as a teenager.

“At the emergency room, they put his shoulder back into place for him,” Ziegenhorn said. “The next day it came out again.”

She said doctors wouldn’t prescribe him prescription opioids for the pain because Beeler had a history of illegal drug use. His shoulder would dislocate often, sometimes more than once a day.

“He was living with this daily, really severe constant pain — he started using heroin very regularly,” Ziegenhorn said.

Beeler knew what precautions to take when using opioids: Keep naloxone on hand, test the drugs first and never use alone. Still, his use was escalating quickly.

A Painful Dilemma 

The couple discussed the future and their hope of having a baby together, and eventually Ziegenhorn and Beeler agreed: He had to stop using heroin.

They thought his best chance was to start on a Food and Drug Administration-approved medication for opioid addiction, such as methadone or buprenorphine. Methadone is an opioid, and buprenorphine engages many of the same opioid receptors in the brain; both drugs can curb opioid cravings and stabilize patients. Studies show daily maintenance therapy with such treatment reduces the risks of overdose and improves health outcomes.

But Beeler was on parole, and his parole officer drug-tested him for opioids and buprenorphine specifically. Beeler worried that if a test came back positive, the officer might see that as a signal that Beeler had been using drugs illegally.

Ziegenhorn said Beeler felt trapped: “He could go back to prison or continue trying to obtain opioids off the street and slowly detox himself.”

He worried that a failed drug test — even if it was for a medication to treat his addiction — would land him in prison. Beeler decided against the medication.

A few days later, Ziegenhorn woke up early for school. Beeler had worked late and fallen asleep in the living room. Ziegenhorn gave him a kiss and headed out the door. Later that day, she texted him. No reply.

She started to worry and asked a friend to check on him. Not long afterward, Beeler was found dead, slumped in his chair at his desk. He’d overdosed.

“He was my partner in thought, and in life and in love,” Ziegenhorn said.

It’s hard for her not to rewind what happened that day and wonder how it could have been different. But mostly she’s angry that he didn’t have better choices.

“Andy died because he was too afraid to get treatment,” she said.

Beeler was services coordinator for the Iowa Harm Reduction Coalition, a group that works to help keep drug users safe. A tribute in Iowa City after his death began, “He died of an overdose, but he’ll be remembered for helping others avoid a similar fate.”(Courtesy of Sarah Ziegenhorn)

How Does Parole Handle Relapse? It Depends

It’s not clear that Beeler would have gone back to prison for admitting he’d relapsed and was taking treatment. His parole officer did not agree to an interview.

But Ken Kolthoff, who oversees the parole program that supervised Beeler in Iowa’s First Judicial District Department of Correctional Services, said generally he and his colleagues would not punish someone who sought out treatment because of a relapse.

“We would see that that would be an example of somebody actually taking an active role in their treatment and getting the help they needed,” said Kolthoff.

The department doesn’t have rules prohibiting any form of medication for opioid addiction, he said, as long as it’s prescribed by a doctor.

“We have people relapse every single day under our supervision. And are they being sent to prison? No. Are they being sent to jail? No,” Kolthoff said.

But Dr. Andrea Weber, an addiction psychiatrist with the University of Iowa, said Beeler’s reluctance to start treatment is not unusual.

“I think a majority of my patients would tell me they wouldn’t necessarily trust going to their [parole officer],” said Weber, assistant director of addiction medicine at the University of Iowa’s Carver College of Medicine. “The punishment is so high. The consequences can be so great.”

Weber finds probation and parole officers have “inconsistent” attitudes toward her patients who are on medication-assisted treatment.

“Treatment providers, especially in our area, are still very much ingrained in an abstinence-only, 12-step mentality, which traditionally has meant no medications,” Weber said. “That perception then invades the entire system.”

Attitudes And Policies Vary Widely

Experts say it’s difficult to draw any comprehensive picture about the availability of medication for opioid addiction in the parole and probation system. The limited amount of research suggests that medication-assisted treatment is significantly underused.

“It’s hard to quantify because there are such a large number of individuals under community supervision in different jurisdictions,” said Michael Gordon, a senior research scientist at the Friends Research Institute, based in Baltimore.

A national survey published in 2013 found that about half of drug courts did not allow methadone or other evidence-based medications used to treat opioid use disorder.

A more recent study of probation and parole agencies in Illinois reported that about a third had regulations preventing the use of medications for opioid use disorder. Researchers found the most common barrier for those on probation or parole “was lack of experience by medical personnel.”

Faye Taxman, a criminology professor at George Mason University, said decisions about how to handle a client’s treatment often boil down to the individual officer’s judgment.

“We have a long way to go,” she said. “Given that these agencies don’t typically have access to medical care for clients, they are often fumbling in terms of trying to think of the best policies and practices.”

Increasingly, there is a push to make opioid addiction treatment available within prisons and jails. In 2016, the Rhode Island Department of Corrections started allowing all three FDA-approved medications for opioid addiction. That led to a dramatic decrease in fatal opioid overdoses among those who had been recently incarcerated.

Massachusetts has taken similar steps. Such efforts have only indirectly affected parole and probation.

“When you are incarcerated in prison or jail, the institution has a constitutional responsibility to provide medical services,” Taxman said. “In community corrections, that same standard does not exist.”

Taxman said agencies may be reluctant to offer these medications because it’s one more thing to monitor. Those under supervision are often left to figure out on their own what’s allowed.

“They don’t want to raise too many issues because their freedom and liberties are attached to the response,” she said.

Richard Hahn, a researcher at New York University’s Marron Institute of Urban Management who consults on crime and drug policy, said some agencies are shifting their approach.

“There is a lot of pressure on probation and parole agencies not to violate people just on a dirty urine or for an overdose” said Hahn, who is executive director of the institute’s Crime & Justice Program.

The federal government’s Substance Abuse and Mental Health Services Administration calls medication-assisted treatment the “gold standard” for treating opioid addiction when used alongside “other psychosocial support.”

Addiction is considered a disability under the Americans with Disabilities Act, said Sally Friedman, vice president of legal advocacy for the Legal Action Center, a nonprofit law firm based in New York City.

She said disability protections extend to the millions of people on parole or probation. But people under community supervision, Friedman said, often don’t have an attorney who can use this legal argument to advocate for them when they need treatment.

“Prohibiting people with that disability from taking medication that can keep them alive and well violates the ADA,” she said.

This story is part of a partnership between NPR and Kaiser Health News.

Listen: Missouri Efforts Show How Hard It Is To Treat Pain Without Opioids

KHN Midwest correspondent Lauren Weber was interviewed by KBIA’s Sebastián Martínez Valdivia to discuss the challenges Missouri faces in managing patients’ pain amid the opioid epidemic.

KHN Midwest correspondent Lauren Weber speaks with KBIA’s Sebastián Martínez Valdivia about the challenges Missouri faces in trying to treat chronic pain without opioids. Weber had reported that only about 500 of Missouri’s roughly 330,000 adult Medicaid beneficiaries used a new, alternative pain management plan to stem opioid overprescribing in the program’s first nine months. Meanwhile, 109,610 Missouri Medicaid patients received opioid prescriptions last year.

You can listen to the conversation on the KBIA website.

No Quick Fix: Missouri Finds Managing Pain Without Opioids Isn’t Fast Or Easy

In the first nine months of an alternative pain management program in Missouri, only a small fraction of the state’s Medicaid recipients have accessed the chiropractic care, acupuncture, physical therapy and cognitive-behavioral therapy meant to combat the overprescription of opioids.

ST. LOUIS — Missouri began offering chiropractic care, acupuncture, physical therapy and cognitive-behavioral therapy for Medicaid patients in April, the latest state to try an alternative to opioids for those battling chronic pain.

Yet only about 500 of the state’s roughly 330,000 adult Medicaid users accessed the program through December, at a cost of $190,000, according to Josh Moore, the Missouri Medicaid pharmacy director. While the numbers may reflect an undercount because of lags in submitting claims, the jointly funded federal-state program known in the state as MO HealthNet is hitting just a fraction of possible patients so far.

Meanwhile, according to the state, opioids were still being doled out: 109,610 Missouri Medicaid patients of all age groups received opioid prescriptions last year.

The going has been slow, health experts said, because of a slew of barriers. Such treatments are more time-consuming and involved than simply getting a prescription. A limited number of providers offer alternative treatment options, especially to Medicaid patients. And perhaps the biggest problem? These therapies don’t seem to work for everyone.

The slow rollout highlights the overall challenges in implementing programs aimed at righting the ship on opioid abuse in Missouri — and nationwide. To be sure, from 2012 to 2019, the number of Missouri Medicaid patients prescribed opioid drugs fell by more than a third — and the quantity of opioids dispensed by Medicaid dropped by more than half.

Still, opioid overdoses killed an estimated 1,132 Missourians in 2018 and 46,802 Americans nationally, according to the latest data available. Progress to change that can be frustratingly slow.

“The opioids crisis we got into wasn’t born in a year,” Moore said. “To expect we’d get perfect results after a year would be incredibly optimistic.”

Despite limited data on the efficacy of alternative pain management plans, such efforts have become more accepted, especially following a summer report of pain management best practices from the U.S. Department of Health and Human Services. States such as Ohio and Oregon see them as one part of a menu of options aimed at curbing the opioid crisis.

St. Louis chiropractor Ross Mattox, an assistant professor at chiropractic school Logan University, sees both uninsured patients and those on Medicaid at the CareSTL clinic. He cheered Missouri’s decision to expand access, despite how long it took to get here.

“One of the most common things I heard from providers,” he said, “is ‘I want to send my patient to a chiropractor, but they don’t have the insurance. I don’t want to prescribe an opioid — I’d rather go a more conservative route — but that’s the only option I have.’”

And that can lead to the same tragic story: Someone gets addicted to opioids, runs out of a prescription and turns to the street before becoming another sad statistic.

“It all starts quite simply with back pain,” Mattox said.

Practical Barriers

While Missouri health care providers now have another tool besides prescribing opioids to patients with Medicaid, the multistep approaches required by alternative treatments create many more hoops than a pharmacy visit.

The physicians who recommend such treatments must support the option, and patients must agree. Then the patient must be able to find a provider who accepts Medicaid, get to the provider’s office even if far away and then undergo multiple, time-consuming therapies.

“After you see the chiropractor’s for one visit, it’s not like you’re cured from using opioids forever — it would take months and months and months,” Moore said.

The effort and cost that go into coordinating a care plan with multiple alternative pain therapies is another barrier.

“Covering a course of cheap opioid pills is different than trying to create a multidisciplinary individualized plan that may or may not work,” said Leo Beletsky, a professor of law and health sciences at Northeastern University in Boston, noting that the scientific evidence of the efficacy of such treatments is mixed.

And then there’s the reimbursement issue for the providers. Corry Meyers, an acupuncturist in suburban St. Louis, does not accept insurance in his practice. But he said other acupuncturists in Missouri debate whether to take advantage of the new Medicaid program, concerned the payment rates to providers will be too low to be worthwhile.

“It runs the gamut, as everyone agrees that these patients need it,” Meyers stressed. But he said many acupuncturists wonder: “Am I going to be able to stay open if I take Medicaid?”

Structural Issues 

While helpful, plans like Missouri’s don’t address the structural problems at the root of the opioid crisis, Beletsky said.

“Opioid overutilization or overprescribing is not just a crisis in and of itself; it’s a symptom of broader structural problems in the U.S. health care system,” he said. “Prescribers reached for opioids in larger and larger numbers not just because they were being fooled into doing so by these pharmaceutical companies, but because they work really well for a broad variety of ailments for which we’re not doing enough in terms of prevention and treatment.”

Fixing some of the core problems leading to opioid dependence — rural health care “deserts” and the impact of manual labor and obesity on chronic pain — requires much more than a treatment alternative, Beletsky said.

And no matter how many alternatives are offered, he said, opioids will remain a crucial medicine for some patients.

Furthermore, while alternative pain management therapies may lessen opioid prescriptions, they do not address exploding methamphetamine addiction or other addiction crises leading to overdoses nationwide — even as a flood of funds pours in from the national and state level to fight these crises.

The Show-Me State’s refusal to expand Medicaid coverage to more people under the Affordable Care Act also hampers overall progress, said Dr. Fred Rottnek, a family and addiction doctor who sits on the St. Louis Regional Health Commission as chair of the Provider Services Advisory Board.

“The problem is we relatively cover so few people in Missouri with Medicaid,” he said. “The denominator is so small that it doesn’t affect the numbers a whole lot.”

But providers like Mattox are happy that such alternative treatments are now an option, even if they’re available only for a limited audience.

He just wishes it had been done sooner.

“A lot of it has to do with politics and the slow gears of government,” he said. “Unfortunately, it’s taken people dying — it’s taken enough of a crisis for people to open their eyes and say, ‘Maybe there’s a better way to do this.’”