A version of this story first appeared in The Investigator, a weekly newsletter by Spotlight PA featuring the best investigative and accountability journalism from across Pennsylvania. Sign up for free here.
HARRISBURG — Some Pennsylvania mothers who lost a child to a drug overdose opted out of a recent listening session hosted by Pennsylvania’s powerful opioid trust, citing concerns about how the group engages with the public.
“Our decision to boycott today is not about refusing to participate,” Marianne Sinisi, a Blair County advocate whose 26-year-old son died in 2018, said afterward. “It is about standing together to say that families deserve more than an opportunity to speak. We deserve to be heard.”
It’s the latest example of ongoing tension over opioid settlement money, which Spotlight PA has documented for years — from debates over how to spend Pennsylvania’s share of billions of dollars to concerns about how a powerful state oversight board makes its decisions. The Pennsylvania Opioid Misuse and Addiction Abatement Trust distributes settlement funds and has the power to withhold money from local governments if it decides they spent inappropriately.
After first forming in 2022, trust officials met in secret for months, Spotlight PA and WESA previously reported. In 2024, a first-of-its-kind survey conducted by KFF Health News and Spotlight PA found Pennsylvania was one of 14 states where an opioid settlement council consistently blocked the public from speaking at meetings. Trust officials here also meet in private to make recommendations for whether to approve local spending decisions.
Trust officials have maintained that they comply with Pennsylvania’s open meetings law.
Last year, officials held their first public listening session. Some family members and advocates called for more changes, including public comment at regular meetings, greater transparency before decisions are made, and more power being placed in the hands of people directly affected by the epidemic.
In responses months later, trust Chair Tom VanKirk said the group would continue to not allow comment at each regular meeting, saying people can weigh in at the local level about spending decisions. He also addressed remarks about who serves on the trust, saying that while “most of us don’t wear it on our sleeves,” many current and former trustees “have had this lived experience that people are talking about … which isn’t generally known to the public.”
The trust board consists of 13 members: a chair who serves at the pleasure of the governor; a department secretary also appointed by the governor; four members appointed by state legislative leaders; and seven regional representatives. The court order governing the trust encourages counties to choose their regional representatives from nearly a dozen categories, including a parent or guardian of someone who has had opioid use disorder and someone in recovery from substance use disorder.
But the order doesn’t guarantee a spot on the board for families directly affected by the epidemic.
Opting out
Ahead of the trust’s second public listening session in August, a group of advocates shared detailed recommendations outlining how the trust could “build stronger relationships with the communities it serves.” But one of the signers, Gail Groves Scott, later said the trust wasn’t interested in having a productive session and did “their best to minimize participation.”
On the day of the session, Groves Scott was the first member of the public to speak — and the only one. She’s a public health researcher and the mother of someone in long-term recovery from an opioid use disorder.
Three other scheduled speakers — all mothers who had lost a child to a drug overdose — withdrew: Sinisi, Susan Ousterman of Bucks County, and Pamela Keefe of Luzerne County.
Groves Scott read a statement from them, explaining their decision.
The statement described how speakers participated in last year’s listening session in good faith, but “many of us left feeling dismissed, discredited, and unheard.” The mothers said the recommendations they submitted received “no substantive response,” and there was “little public outreach” for this year’s session.
“We believe meaningful public engagement cannot be reduced to a few minutes of testimony once a year after the most important conversations have already taken place,” Groves Scott continued.
Then she announced a news conference they were hosting that afternoon. She invited members of the opioid trust and the public to attend.
VanKirk defended the group’s approach, saying the trust announced at its May meeting that it would host a public listening session and that people could register from June 1 through June 30. The trust later extended the registration deadline to July 14, a trust official told Spotlight PA. The session took place Aug. 6.
“From our perspective, we have given the notice,” VanKirk said shortly before adjourning. “And we gave it at a public meeting, and also put it on the trust website.”
Valerie Felici, a Philadelphia resident whose 25-year-old son died of a drug overdose in 2019, told Spotlight PA she originally wanted to participate in the trust’s public listening session. But she said registration was closed by the time she learned about it.
She spoke at the virtual news conference hosted by advocates. She detailed her work as a police officer and as a nonprofit leader, describing spending nights and weekends supporting grieving families, helping people find recovery, and doing more.
“None of us wanted to become experts in overdose, grief, failed systems, drug policy,” Felici said. “We became experts because people we loved were harmed or died, and because we could not accept that other families should have to endure this suffering and pain.”
The news conference led to a direct exchange between advocates and one member of the trust.
Kevin Boozel, a Butler County commissioner and trust member, attended the news conference — and spoke when organizers opened the floor for others.
Boozel told people in the meeting that his “heart goes out to every single person that’s on this call.” He said he’s been on the frontline with them, citing his work as a counselor, as an EMT who’s delivered overdose reversal medication, and other experiences. He described limits on the trust’s role.
“I don’t hear anyone from the trust truly engaging with you on a personal level, and I think that’s what you’re asking for,” Boozel said. “And the reality is, they can’t. There’s a lot of legality in the way we speak.”
Multiple times, Boozel framed his comments around the idea that parts of the process weren’t clear to the public. He described things “people do not understand,” and that “a lot of people don’t understand.” At one point, he said the trust is meant to serve as “guardrails” for the counties.
“We don’t approve a particular program, per se. We say, ‘Look it fits in Exhibit E,’” he said, referring to a settlement document that describes approved and recommended uses for the money. “That’s all that they are doing. I don’t know that people realize that.”
Advocates say trust decisions have more scope than that. After counties and local governments choose how to spend their share of the money, the trust reviews their decisions, approving or disapproving. There have been disputes over how the trust should interpret Exhibit E, with the trust offering clarifying guidance in some cases and reversing its own decisions in others. Multiple local governments have sued in court, challenging rejections from the trust.
Some of the news conference attendees said they appreciated Boozel being there. But they also pushed back on some of his comments.
Ousterman, executive director of the nonprofit Vilomah Foundation and one of the advocates that withdrew from the listening session, said Boozel seems like he is “genuinely wanting to learn and wanting to do better.”
Advocates do understand the legal issues involved, she added, saying “you would be surprised at how much knowledge we have.” She said the oversight process is flawed, and there are people who have solutions. “But nobody wants to hear them,” Ousterman said.
Felici also addressed Boozel directly.
“For you to sit here and just dismiss us as if we don’t know or we don’t understand, I feel is really just doing what that whole board does to us,” Felici told him. “And it’s victimizing victims all over again, and that’s shameful.”
Boozel acknowledged the objections to his comments in an email to Spotlight PA.
He said he had “no doubt that the individuals on the call have researched Exhibit E extensively and are well-informed about its provisions.” He also said he hopes “we can continue listening to everyone involved, keep the focus on the people most affected, and work toward solutions that genuinely serve them.”
Brie Anderson, administrator for the trust, told Spotlight PA the group “appreciates those who take the time to share their perspectives and remains committed to providing opportunities for public input and engagement.”
Groves Scott and other advocates plan to continue pushing for changes. She’s detailed a number of proposals, including for the trust to allow public comment at all regular meetings, to open up the private meetings where trustees review local spending decisions and make recommendations, and to release more financial documents and other records.
She told Spotlight PA the decisions made now will have a long-term impact on how this money is spent and overseen. Multiple advocates said they want the trust to engage with the public in a meaningful way.
“It’s just really disturbing to us that we’re being treated like adversaries all the time rather than as potential collaborators,” she said.