The conversation wasn’t sounding good for Kensington residents on June 20.

The Philadelphia neighborhood is a critical center of the nation’s opioid crisis, and the city had decided to spend $7.5 million in opioid settlement money to improve the quality of life there. But on that day, a Pennsylvania oversight board was about to vote on whether to reject the city’s decision.

It was a thorny issue with major implications — both for Kensington residents and people across the state, as the decision could set a precedent for what kind of spending the board would allow for years to come.

But a lot of people were shut out of the discussion.

Pennsylvania’s board doesn’t allow members of the public to speak at its meetings, a rule that sets it apart from about two dozen similar opioid councils nationwide.

“It’s another moment where folks not connected to this community are making decisions for this community, and I think that’s inappropriate,” said Bill McKinney, a Kensington resident whose nonprofit is involved in some of the city’s settlement-funded initiatives. “Those that are sort of most affected are not at the table.”

It’s one example of how the public, including people who have lost loved ones to the opioid crisis or are dealing with it daily, are routinely shut out of having a meaningful say in how this windfall can be best used to address the damage. They are eager to suggest solutions for dollars that many of them consider blood money. But a first-of-its-kind survey conducted by KFF Health News and Spotlight PA found that, in many places, their voices are systematically dismissed.

In at least 39 states and Washington, D.C., councils consisting of government officials, clinicians, law enforcement officers, and others guide decisions about how to spend settlement dollars. These powerful groups are influencing addiction policy and funding at a time when more than 100,000 Americans are dying of overdoses annually.

At least 14 of these councils — including Pennsylvania’s — routinely block members of the public from speaking at their meetings. Four of those typically conduct their meetings in secret, barring the public from even attending or observing.

The survey also found:

• The majority of councils do not make video recordings of their meetings readily available online for those who cannot attend live. Although some councils said recordings can be accessed through public records requests, at least one — Minnesota’s Opioid Epidemic Response Advisory Council — deletes its recordings after using them to create meeting minutes. (Minnesota law does not require the council to record its open meetings or post recordings online.)
• At least five states have used committees or work groups that meet in private, or have a policy for allowing such private meetings. In Pennsylvania, such work groups have become a point of contention, with victims, advocates, and even one member of the council questioning their legality. (The Pennsylvania Opioid Misuse and Addiction Abatement Trust’s administrative director said the work groups’ meetings are not required to be public. They make recommendations that the full council decides on.)

Practices that close the public out of settlement spending discussions are “unconscionable,” said Stephen Loyd, chair of Tennessee’s Opioid Abatement Council, which regularly allows public attendance and comment at its meetings. “This is the population we’re there to serve. They have to have a voice in this process.”

Different Stances on Public Comment

People directly affected by the issue are a staple of the Tennessee council’s meetings. This year, commenters have included several parents holding photos of their deceased children and choking back tears, and at least one frustrated community member.

At the June meeting in Memphis, Peter Hossler, an associate professor at Rhodes College, said he was “very angry” about how the council’s recent grant awards of $81 million seemed to shortchange the western part of the state.

Loyd called such critique “invaluable,” comparing it to the feedback he received from loved ones during his recovery journey.

“We have to be held accountable,” he told KFF Health News and Spotlight PA. “And then we have to fix it.” Hossler’s comments are changing the council’s conversation about its next round of grants, Loyd added.

Loyd believes people who have been failed by the current system know what needs to be improved “better than anybody.”

“I want to talk to the people who had medication stopped in jail and laid there and withdrew,” he said. “I want to talk to the people who got out of jail with no money, a couple of felonies hanging over their heads, three meetings they had to make that week or they’re going to be in violation of their probation, and they ain’t got a car or driver’s license.”

States cited a variety of reasons for limiting public involvement. In some, state law does not require councils to take public comment at meetings. Several officials said they’ve sought feedback in other ways. An official in New Jersey said its council held public listening sessions, but that its monthly meetings are not public.

Some officials may worry that public comment would add to meetings that already run multiple hours, but several states manage that by limiting each person’s comment to a few minutes.

For communities of color, being shut out of opioid settlement discussions can compound the negative effects not just from today’s overdose crisis but from the earlier crack cocaine epidemic. Many people considered the government’s response at that time to be ineffective and harmful.

If settlement money is used only to “build on what’s already in place, you’ve already failed,” said Philip Rutherford, an expert on substance use disorder at the National Council for Mental Wellbeing.

At a July 2023 meeting of Illinois’ settlement council, Fanya Burford-Berry said the current system doesn’t work for women of color with substance use disorder — they can risk losing custody of their children. Burford-Berry, director of the West Side Heroin/Opioid Task Force in Chicago, hopes comments like hers will prompt the council to support solutions tailored to women of color, including bringing together more organizations that already work in those communities.

“When you allow more people to be involved, and then they have an idea, and they get excited about it, then they get more people involved and the circle of healing can become larger,” she said.

‘A Retraumatizing Moment’

In Pennsylvania, the state’s 13-member opioid settlement board has the power to withhold future funding if it decides local governments spent their money inappropriately. At its June meeting, the board — which includes a state senator representing part of Kensington — voted to disapprove of Philadelphia’s use of $7.5 million for park improvements, home repairs, rent relief, and other initiatives in Kensington. (Philadelphia later appealed the rejection; the issue is pending.)

McKinney, the Kensington resident and executive director of the New Kensington Community Development Corporation, called the board’s decision “a retraumatizing moment” for residents and criticized the way they were silenced.

“I think it’s unfortunate that things were chosen to be done that way,” McKinney said.

Others have also been frustrated by Pennsylvania’s settlement council.

Gail Groves Scott, a public health policy advocate who has a child in sustained recovery from an opioid use disorder, attended a board meeting in person last year. Not allowing the public to comment at meetings, she said, prevents them from offering feedback at critical times, such as when the board is considering county spending plans or contracts for its operations.

“We could be questioning those decisions or adding information they may not be aware of,” Groves Scott said. “It’s disappointing that, despite pushback from multiple people, they have not changed.”

Some advocates say the closed sessions of work groups, which make recommendations about which programs to approve, obscure why the full board takes certain action.

Pennsylvania trust officials have defended their practices.

Briana Anderson, the trust’s administrative director, downplayed the group’s role, saying it does not make specific spending decisions on settlement money but reviews choices made by local governments. State law doesn’t require the trust to offer public comment at its meetings but the public is encouraged to participate at the local level, Anderson added.

Pennsylvania’s practices contrast sharply with the way councils operate in places like Illinois, Kentucky, and Oregon, which routinely allow public comment at both full council and smaller committee meetings. In Kentucky, the open process has allowed members of the public to weigh in on a fierce debate over funding research into ibogaine, a psychedelic drug that has shown potential to treat addiction. At least eight people spoke in favor of the drug at the council’s January meeting.

Back in Tennessee, council chair Loyd said he hopes to increase public participation by creating an advisory panel that consists primarily of people who have personally experienced addiction or their loved ones.

He also encouraged other settlement councils to embrace opportunities to hear from people in their states.

“You’ll make better decisions as a result. I can’t be convinced otherwise,” he said.

Methodology

In June and July, reporters from KFF Health News and Spotlight PA surveyed opioid settlement councils in 39 states and Washington, D.C., to assess their general and standard practices for engaging with the public. The team also reviewed council websites, meeting minutes, agendas, and, in some cases, hours of meeting recordings. These councils have various roles, including directly deciding how to spend the money, making recommendations, or providing oversight. Although they go by different names, including advisory councils, boards, committees, and commissions, we refer to them as councils as a broad, encompassing term.

Spotlight PA is an independent, nonpartisan, and nonprofit newsroom producing investigative and public-service journalism that holds power to account and drives positive change in Pennsylvania. Sign up for its free newsletters.

By Aneri Pattani and Henry Larweh and Ed Mahon, Spotlight PA
Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.