Kayla Kalel, 28, of Old Town has lost 17 friends to the opioid epidemic, including her best friend who overdosed on heroin in 2016.
“It’s just devastating,” said Kalel, co-leader of Brewer’s chapter of Young People in Recovery. “It could very easily be me.”
She actually died, too — twice — but is alive today because someone used naloxone to revive her after two accidental overdoses. She used the gift of time to fight back and heal, and ended up saving another life.
She participated in a training a couple years ago by the Health Equity Alliance to learn how to administer naloxone, and received a dose to take home, just in case. She gave it to a friend. When he later overdosed, his mother used it to save his life.
Because Kalel lived, someone else got to, too.
Today, medical experts largely know what can help address the opioid crisis: Make treatment medications more widely available; reduce people’s inherent bias against those with a substance use disorder; work with the criminal justice system to ensure people receive addiction treatment, including upon release from jail; curb inappropriate opioid prescriptions; and expand access to naloxone.
Actually pursuing these changes is another matter.
Yet for at least the last four years, that’s what key people in the Bangor region have been doing: trying to change the ingrained practices and mindsets of their health organizations, law enforcement, courts and the public at large.
It has been a monumental task. Maine has the eighth highest opioid-related death rate in the country, according to the Kaiser Family Foundation. Penobscot County has the second highest rate in Maine.
But while deaths have drawn headlines, people in the Bangor area have been working behind the scenes to counteract the damage. At first, as a group of competitors gathering around a table, they were an anomaly. Now, the collective known as the Community Health Leadership Board, or CHLB, whose eight current members oversee some of the city’s biggest health and social services organizations, is setting a precedent.
Since 2014 they have trained more providers to prescribe the medication Suboxone, launched the only detox center north of Portland, enabled the relaunch of Penobscot County Drug Court, raised money to pay for the free distribution of Narcan, and assisted with a number of grants that have led to a law enforcement diversion program, peer recovery coach program, and a clinic devoted to getting people medication-assisted treatment quickly.
How these health leaders came together shows it is possible to address a complicated public health issue. But recent events — with the loss of three key members and a state funding change that threatens the detox center — also show how fragile their accomplishments could be.
‘The top of the organizational chart’
On May 4, 2016, the Bangor Daily News and many CHLB organizations organized a public gathering where several hundred people discussed what they and others could do to help save lives. They generated more than 2,000 ideas at the One Life Project event, which I narrowed down to 99 and published.
Soon after I got a call from Sue Bernier, executive director of philanthropy at the St. Joseph Healthcare Foundation. A young person she knew had recently died of an overdose. The ideas were great, she said, but who would fund them? She suggested a social media fundraising campaign and said she would ask the CHLB members if they were interested.
Their reaction was swift. On May 25, the CHLB kicked off the Circle of Caring. Hundreds of people in the Bangor region posted pictures online of circles — most often of themselves holding hands with other people in a ring — to represent a community united in supporting those with opioid use disorder. They often donated, too. Today its Facebook page has 670 members.
The effort raised $17,000 for local health organizations to distribute nearly 500 naloxone kits for free, starting in February 2017.
In 2016 the Health Equity Alliance distributed 252 naloxone kits, which reversed at least 65 overdoses, said Kenney Miller, the organization’s executive director. In 2017 it distributed about 190 kits, including many it received through the fundraising campaign, and heard about 95 overdose reversals.
Did one of those kits save the life of Kalel’s friend? Most likely.
The Circle of Caring campaign succeeded because of the collective effort of a number of people, driven by the leaders of key organizations, who turned the idea into action. The CHLB championed it by spreading the message and organizing the Narcan distribution.
“Because it was the top of the organizational chart sitting at the table, they could immediately leverage financial support, human resources, marketing resources, all of these things that they had within their own organizations,” Bernier said.
Often I got to see the CHLB’s work up close as I participated in a committee that helped maintain a blog on addiction and supported area events to involve the public in conversations about addiction.
At the time, there were three additional CHLB members: from Eastern Maine Healthcare Systems, Eastern Maine Medical Center and Acadia Hospital.
In May of this year, EMHS, the umbrella organization for EMMC and Acadia Hospital, announced they would withdraw from the CHLB given that some municipalities in Maine, including Bangor, were pursuing a lawsuit against national pharmaceutical manufacturers and distributors for allegedly causing the opioid epidemic, and might name a former EMMC physician.
On July 11, EMHS spokesman Chris Facchini said “we are reviewing if and how we can re-engage with these communities so we can again work together on this terrible epidemic.”
Losing three people on an 11-person board — especially the head of Eastern Maine Medical Center, which is the largest employer in Penobscot County and the second largest hospital in Maine — has been a blow to the CHLB’s efforts to coordinate a regional response to the opioid crisis.
“I understand their lawsuit. They’ve taken a very conservative approach, I believe, in terms of responding to that, and I think all of us on CHLB would hope that they would reconsider,” said Mary Prybylo, president of St. Joseph Healthcare, part of Covenant Health.
‘You have to build trust’
The CHLB had its origin in crisis.
Around 2011, Bangor residents saw the city changing around them. The synthetic stimulant bath salts drew extensive attention, but another problem was worsening and taking more lives: opioids such as oxycodone, hydrocodone, heroin and fentanyl.
In August 2012, three people in Bangor were killed and their bodies set alight in a car after a drug deal went bad, shocking many with what seemed like big-city crime.
“There was a feeling we were out of balance somehow,” City Manager Cathy Conlow said.
Meanwhile, some city councilors and residents pushed back when social service organizations proposed changes to treat more addicted clients.
A month after the triple homicide, the Bangor City Council voted to “indefinitely postpone” a decision to allow Penobscot Community Health Care to expand transitional housing at its Hope House shelter. It later allowed PCHC to move ahead, but not without contention.
“Every bed that [Hope House] provides is another problem that comes to Bangor,” said then-Councilor James Gallant.
Then, in November 2013, the methadone clinic Penobscot County Metro Treatment Center proposed adding Suboxone treatment. In response, the council instituted a 180-day moratorium that prevented providers from expanding their prescribing of the medication.
What’s more, the city’s public health department faced uncertainty. Director Shawn Yardley had taken a new job, leaving a void in the city’s leadership on public health matters. The department lost funding for its clinic that tested for sexually transmitted diseases. And finding new leadership proved difficult.
Conlow asked Patty Hamilton, then the city’s public health program manager, to take over the department, but she initially declined. As a clinician, she said she didn’t think she would enjoy the management and legislative work associated with the role. The following year’s events would change her mind.
Conlow, formerly a chimney checker for a health department in Oregon, faced two big challenges: What should the city do with its public health department — one of only two municipal public health departments in Maine — and how could it make the debate about drugs more productive?
Conlow called Prybylo, who was then relatively new to St. Joseph Healthcare and had been visiting local groups to better understand the Bangor area. Prybylo had been struck on her visits, she said, by “how many organizations were working very diligently on a particular aspect of health or population health or concern within the community, but it really wasn’t coordinated.”
Prybylo agreed to help pull together fellow CEOs from area health organizations into what became the CHLB.
“I invited all of them,” Conlow said, but “Mary became the champion.”
The health leaders, many of whom were competitors, quickly concurred on the value of having a city public health department and began to develop a larger purpose: Together, they could make sure they understood what everyone else was doing, know ahead of time if they would be competing for limited funding, and take on initiatives to improve the region’s health.
At first they didn’t know what their health priority would be.
Separately, Conlow and Hamilton had been trying to figure out how the city could address the burgeoning opioid crisis in a nonpolitical way.
They had settled on forming a city council-approved group that eventually included 22 people, including representation from hospitals, education, clergy, methadone and other treatment providers, city councilors, residents, police, fire and public health officials.
They used the rest of Yardley’s salary, which had already been budgeted, to pay for a facilitator. And over many weeks, what was called Bangor’s Community Working Group listened to a number of presentations by local professionals on the realities of opioid addiction. Their final task was to make recommendations to address the crisis.
“People tend to define the problem as the absence of their solution. I didn’t see that going on. I saw a lot of education going on,” said Bruce Campbell, a working group member and the clinical director at Wellspring, a treatment agency in Bangor.
As they neared completion, another public gathering, organized by a city subcommittee led by Campbell, brought the country’s top drug policy official at the time, Michael Botticelli, to Bangor.
On Oct. 8, 2014, Botticelli, acting director of the White House Office of National Drug Control Policy, cemented for a packed audience at the Gracie Theatre at Husson University much of what they already knew, including that treatment is hindered by stigma; police and courts can do more; and providers can stop issuing so many opioids, which at the time totalled 82 opioid prescriptions for every 100 people in Maine.
The event “kind of became the galvanizing point for the remainder of the community planning process,” Campbell said.
The separate efforts started to come together.
In November 2014, the working group published 17 recommendations, including to reduce stigma, reduce over-prescribing of opioids, open a detox center, distribute naloxone, expand access to medication-assisted treatment in rural areas, re-establish drug court, and connect the criminal justice system with treatment and recovery resources.
In its final report, the group described the burden Bangor faced to properly care for an influx of patients, especially in the face of a “lack of a cohesive state policy” and reductions in state funding for treatment.
Its objective, the group said, was “to develop an integrated, holistic, economically sustainable and efficient system that encompasses the entire region, and treats addicted and dependent citizens like any other person who is ill and deserves our care, compassion and support.”
But how would the plan be put into action? wondered Hamilton and Jamie Comstock, with the public health department. They decided to pitch it to the CHLB.
The CHLB members, who had concurrently decided to tackle opioid addiction, said yes.
‘We don’t abandon them’
One of the first steps for CHLB members was to acknowledge they had contributed to the opioid epidemic by over-prescribing painkillers, to which many patients became addicted.
“I didn’t just see it happening. I did it myself,” said Noah Nesin, vice president of medical affairs for PCHC, who previously practiced in Lincoln. Patients who “had been found to be abusing [their prescription], or overusing it … it would be quite common for them to be fired from their primary care practice or at best be asked to stop cold turkey.”
So, under the auspices of the CHLB, Nesin led gatherings for about a year with 20 clinical staff from different organizations across the region to see if they could adopt uniform prescribing practices. They did so unanimously.
Today if a patient goes to any of eight Bangor-area health centers or hospitals, they will have to meet similar requirements to get an opioid prescription for chronic pain, including to only use one pharmacy, not request early refills, dispose of unused drugs responsibly, keep appointments, and agree to random pill counts and urine drug tests.
They will also receive consistent information about the use of opioids for chronic pain and have to acknowledge a number of points, including: “I understand that our goal is improved function and not total relief of pain,” and “I know that up to 35% of people using these drugs may develop addiction.”
The group published its protocols in November 2015, ahead of the U.S. Centers for Disease Control and Prevention’s own, similar prescribing guidelines, and before a state law forced prescribers to limit opioid doses.
The results are clear. In January 2013, PCHC prescribed opioids to about 1,700 patients, Nesin said. Today there are fewer than 408.
Importantly, the group also standardized what to do if patients misuse their prescription. Now, patients may be tapered off, but “we don’t abandon them or scold them. We engage with them at a higher level until we can stabilize them,” Nesin said.
The change in approach was one more reason why the area needed more access to treatment, and PCHC expanded Suboxone prescribing at a number of locations.
Then, last year, supported by a grant from the Maine Health Access Foundation, PCHC launched a new, rapid access clinic at Brewer Medical Center to make Suboxone treatment open to anyone, not just PCHC’s own patients, and as quickly as possible. The current wait time is one to two weeks. The idea is that PCHC can now support the patients of CHLB organizations when they don’t have room, plus see people with no primary care provider.
Treatment efforts were bolstered by Acadia Hospital, which also won a grant in 2016 from the Maine Community Foundation to train primary care providers from different organizations to provide Suboxone.
All of the work led to more treatment options.
In 2011, PCHC had a “handful” of providers who were licensed to prescribe Suboxone and fewer than 50 patients on the medication, Nesin said. In 2017, more than 30 providers were licensed to prescribe it, and more than 400 patients obtained the treatment.
At St. Joseph Healthcare, there was one provider offering Suboxone in 2011, five in 2012, and 11 today, said Dianne Davis, an executive assistant.
Despite the work, the full need is still not being met, Nesin said, including in emergency rooms where people often end up after an overdose. Instead of getting Suboxone, “many of them just are revived, assessed, made sure they’re stable and given information but return to active drug use,” he said.
The challenge is in ensuring emergency room patients continue to be seen after they leave — to make sure the dose is correctly refined and that they get other support and counseling, said Prybylo, with St. Joseph Healthcare. There are still not enough providers to be able to see someone within 24 or 48 hours.
In addition to treatment needs right now, the CHLB has its eyes on the long-term challenges facing children and families.
Recently Penquis applied for a $750,000, three-year grant from the U.S. Department of Justice to reach the thousands of children who have suffered the consequences of the opioid crisis.
Young people may need counseling or grief groups. They may need access to clothing, transportation, emergency shelter or food that can be eaten without cooking. And they may need age-appropriate education on how to save their parents’ lives, whether through 911, the use of naloxone or cardiopulmonary resuscitation.
In true form, 14 different organizations came together quickly to support the application, said Kara Hay, CEO of Penquis. The CHLB would be a key partner in carrying out the work.
‘I had so much guilt and shame’
The Bangor region can point to changes, but it’s too soon to know the long-term effects.
“The real impact is going to be harder to measure, like are we adequately treating chronic pain in an evidence-based way? Are we becoming more trauma informed? Are we offering people easier access to treatment?” Nesin said. “And are we reducing bias?”
He has met people whose lives have been saved by new programs. And he believes people are more likely now than several years ago to encounter others who see addiction as a chronic condition. But there’s still much to do.
For Conlow, the process of working together is vital.
“For a community with virtually no resources we were able to develop some meaningful dialogue and then some meaningful change,” she said. “What we can do on our own is not nearly as significant as what we can do with other people.”
Kalel has also seen changes. Today it seems more socially acceptable to talk about recovery, she said, and that’s important because people need to know recovery is possible.
“When I was using, I had so much guilt and shame. That’s what drove me to continue to use,” she said. “When we give people the space to be their true selves and really get the good out of them, and get them to a place where they can love themselves, beautiful things can happen.”
Maine Focus is a community engagement initiative at the Bangor Daily News. Questions? Write to firstname.lastname@example.org.
On Wednesday, July 18, help set priorities on what to do next to address the opioid epidemic, together with the candidates for governor. The free One Life Project: Public Priorities event will start at 5:30 p.m. at the Bangor Arts Exchange ballroom. Register here.