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With the drug industry as its partner, an addiction policy group invites tough questions

By Lev Facher April 5, 2018 WASHINGTON — Jessica Hulsey Nickel had only just begun to speak at a House hearing last month when a man in the back corner of the committee room stood, unfurling a paper banner and shouting toward the witness stand.

“I would like to know how much money the Addiction Policy Forum has received from the pharmaceutical industry,” yelled Randy Anderson, a well-known addiction treatment and recovery advocate in Minneapolis. “We’ve asked the question and no one will tell us. I figured I’d fly here today and ask.”

A congressman tried to gavel Anderson quiet. Committee aides scurried to fetch police. Nickel — the target of Anderson’s protests and Addiction Policy Forum’s president and CEO — ignored the interruption and continued with her testimony about legislation that would reshape federal laws regulating addiction treatment. When the hearing finished two hours later, no one besides Anderson had raised questions about potential conflicts of interest.

Despite Anderson’s difficulty in getting her attention, Nickel’s three-year-old nonprofit is increasingly in the spotlight, both for its high-profile advocacy work and its close ties with drug makers. The vast majority of the group’s funding comes from pharmaceutical companies, some of whose executives sit on its advisory board. Overshadowed by APF’s funding sources, however, is a more striking connection: Until last fall, Nickel was concurrently working as a lobbyist for Alkermes, the maker of a drug used to treat opioid addiction, while heading the nonprofit.

In interviews with STAT, Nickel brushed off concerns about her work with Alkermes and her group’s multimillion-dollar partnership with PhRMA, the drug industry lobbying group, calling those reservations “an old way of thinking.”

“We need to be collaborating with industry, companies that have R&D budgets,” Nickel said. “The folks that cure diseases need to be at the table with us, so I stand by this partnership. I stand by the decision.”

Increased attention to the epidemic, however, has created an undeniable business opportunity for many drug companies. A spending bill passed earlier this year added $3 billion in funding for initiatives specific to the opioid crisis. Budget caps allow for many more billions to be spent in 2020 — a significant chunk of which is destined to fund medications used to treat opioid use disorder. The bills Nickel testified about before the Energy and Commerce Committee are likely to authorize much of this spending.

With Capitol Hill purse strings newly loosened, the companies that make medications critical for treatment of opioid use disorder — many of which fund APF — are positioned to earn millions as treatment is expanded. Those coming changes have heightened the fears of advocates wary of APF, which declined to specify dollar amounts for the funding it has received from industry partners.

“Transparency and accountability are paramount, and we have to hold our leaders to higher standards,” said Jesse Heffernan, a recovery advocate based in Wisconsin.

Heffernan, the former national empowerment and outreach coordinator at the advocacy group Faces & Voices of Recovery, has also been in early-stage discussions with Sen. Tammy Baldwin (D-Wis.) about pharmaceutical industry influence more broadly.

“When we have leaders like those from many national organizations like APF being tied to any kind of pharmaceutical money,” Heffernan said, “we need them to step up and talk about it.”

Political connections Whatever legislation Congress passes to deal with the opioid crisis — key Republicans in the House hope for a vote prior to Memorial Day — much of the law is likely to focus on access to medication-assisted treatment.

The draft legislation now before Congress includes a provision requiring many providers of addiction treatment receiving federal grants to ensure access to all FDA-approved forms of medication-assisted treatment for opioid use disorder.

Methadone, among the oldest, is the cheapest of the four. A second form of MAT, buprenorphine, has a number of manufacturers. Only one company, Alkermes, makes an increasingly popular third option — Vivitrol. A fourth MAT option comes from Indivior, an injectable form of buprenorphine that is also long-acting. Braeburn makes another injectable buprenorphine product it hopes will receive FDA approval shortly.

Alkermes is among the original funders of the Addiction Policy Forum, while Indivior and Braeburn are also listed as APF sponsors. The multiyear partnership with PhRMA is worth “tens of millions,” the trade association said. Each of the group’s industry partners said it had made the contributions without restrictions.

And from 2014 to 2017, Nickel is listed by name in $760,000 worth of lobbying disclosures for work on behalf of Alkermes through a separate consulting firm.

Nickel, who lost her father to opioid use disorder at an early age and whose mother passed away after years in recovery, said her group’s relationships with drug companies have proven valuable in APF’s fight to wind down the current opioid epidemic. Already, the group has used industry money to implement ambitious projects that advocates say could make life easier for individuals seeking treatment and their families.

APF is mapping addiction treatment and recovery resources in each of the nation’s roughly 3,000 counties; orchestrating yearly events on Capitol Hill for families impacted by substance use disorders; and took a lead role in planning a drug development event later this month alongside the Food and Drug Administration and National Institutes of Health.

Taking pharma money is more the norm than the exception among nonprofits that work on addiction issues in Washington. Despite APF’s funders, Nickel insists the policy the group advocates for is determined by two factors: science, and the needs of the families it works with.

But APF is noteworthy for its close connections across Capitol Hill and federal agencies, which have allowed the group a central role in policy discussions.

In June, Nickel testified before a White House commission on combating the opioid crisis. In late 2017, APF invited stakeholders to a brainstorming session with APF and policy staffers for the House Energy and Commerce Committee, a key committee shaping opioid legislation, according to emails obtained by STAT. A committee spokeswoman denied such a meeting ever took place.

“We’ve been asked to submit ideas to House Leadership regarding suggestions for legislation to address addiction, like a CARA 2.0,” APF’s chief operating officer, Jay Ruais, wrote in the October email. APF confirmed to STAT in November that it was working with lawmakers from both parties on opioids legislation.

The group will honor House Majority Leader Kevin McCarthy (R-Calif.) at an awards dinner later this month. Nickel herself was a legislative aide to Sen. Rob Portman (R-Ohio) over a decade ago when he served in the House.

And most recently, APF has been jointly planning, with FDA and NIH, a patient-focused drug development event planned to take place April 17. The event will invite individuals and families impacted by substance use disorder to share their perspectives regarding what medicines have been useful and what is lacking in the current treatment landscape.

An FDA spokesman said the agency, after receiving a proposal from APF to run a patient-focused drug development event, liked the group’s idea so much that it decided to take the event over and run it internally, with logistical and outreach support from APF.

“Folks that say we shouldn’t be collaborating with the FDA or NIDA or NIH, or companies that make medicines for our disease space — I think those are folks that are stuck in an old way of thinking.”

JESSICA HULSEY NICKEL, ADDICTION POLICY FORUM PRESIDENT AND CEO APF has also reached into the federal research world for talent, hiring Maureen Boyle — formerly the chief of the science policy branch at the National Institute on Drug Abuse — as the group’s chief scientific officer in December.

“Folks that say we shouldn’t be collaborating with the FDA or NIDA or NIH, or companies that make medicines for our disease space — I think those are folks that are stuck in an old way of thinking,” Nickel said. “Those that can give us better medicines, better treatments, better pathways for our families, they need to be at the table with us.” By and large, established voices in Nickel’s orbit agree. “This is pretty labor-intensive, expensive stuff, and nobody else has done it,” said Sue Thau, a policy consultant for the Community Anti-Drug Coalitions of America and a member of APF’s board of directors. “That’s what [Nickel] is using the money for.”

Treading cautiously Others are less convinced that the cost of collaborating with industry is worth the benefits.

“The practice of funding astroturf patient advocacy organizations is an industry-wide practice,” said Leo Beletsky, a public health and law professor at Northeastern University who focuses on drug policy. “This is no different, and certainly there is a huge business opportunity that Alkermes has happened upon here.”

After a New York Times report in February, the voices crying foul became louder. The story highlighted APF’s partnership with PhRMA and detailed a meeting Nickel attended at which industry lobbyists pushed Minnesota lawmakers to reject a proposed tax on prescription opioids.

“The pharmaceutical industry is now attempting to co-opt and otherwise influence individuals and families to take the pressure off a mounting onslaught of civil lawsuits and state opioid tax bills,” Facing Addiction, a national nonprofit geared toward addiction treatment and recovery advocacy, wrote on its website in February, directing readers to the Times report.

Still, addiction experts emphasize that medication-assisted treatment is a hugely valuable approach to help counter the opioid epidemic. And legislation that widens access to such medicines is, broadly, a good thing.

Some experts did question the requirement, in the draft legislation, that federally funded providers of substance use disorder treatment provide access to every FDA-approved drug on the market. That language has become common in legislation focused on addiction treatment, but has taken on added significance as new, expensive forms of MAT gain approval.

The cost of Vivitrol and of Indivior’s injectable drug are a large part of some advocates’ concern that compelling their presence in every addiction treatment setting could, in fact, pose a barrier to traditional and cheaper forms of medication.

“I’m in favor of requiring addiction treatment providers to offer the first-line treatments” of buprenorphine and methadone, said Dr. Andrew Kolodny, the co-director of Opioid Policy Research Collaborative at Brandeis University. “[But] if you make a provider do all or none, that’s making it harder for them to do what I think is essential.”

Spurring transparency Because of APF and other groups’ connections to the drug industry, some advocates have hung their hopes on a pending bill from Sen. Claire McCaskill (D-Mo.) that could force more transparency. The bill would require any nonprofits receiving federal money — which APF does, in the form of grants from the Substance Abuse and Mental Health Services Administration — to disclose the value of all contributions from industry.

McCaskill released a report in February about chronic pain advocacy groups that later proved to have been funded by pharmaceutical companies. As a follow-up to that report, she is planning legislation to force added transparency from pharmaceutical groups regarding their contributions to nonprofits.

In the meantime, some in the recovery sphere are treading cautiously. Lori Erion, the founding director of the Ohio-based group Families of Addicts, said she stopped working with APF’s state chapter there due to concerns about industry influence. “I have no doubt the intentions of Addiction Policy Forum are good,” she told STAT. “However, I am concerned that advocating for the people could be skewed when the largest part of their funding comes from big pharma. I founded FOA Families of Addicts and know the funding struggles well that we face. For me, it’s a matter of integrity and doing what is best for the people. I wish APF the best.”

But hopes that the Addiction Policy Forum might cease to accept pharmaceutical money, or play a less central role in national advocacy, are unlikely to be realized, as their work forging partnerships with other national organizations and issuing grants to advocacy groups around the country continues.

“I think it’s foolish to think that some inexperienced and new activists are going to divide the recovery advocacy movement,” said Patty McCarthy Metcalf, the executive director of Faces & Voices of Recovery, a national treatment and recovery group that has partnered with APF.

“[Nickel has] never taken a position she doesn’t fully believe in,” Thau said. “She’d give the money back before she’d do that.”

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