Philanthropy’s ‘Uneasy Journey’ to Supporting Behavioral Health

Monday April 29, 2024

By Don Sapatkin

Plus: How the broad bipartisan consensus on tackling drug overdose deaths could fray as the presidential race heats up. May is Mental Health Awareness Month. Mental illness costs the U.S. economy about as much as an average recession, a new analysis finds. And our favorite: Some Jewish scholars suggest that Moses was high on magic mushrooms when he inscribed the Ten Commandments.

But first, ICYMI, a look at a story we published last Friday in partnership with WBEZ, Chicago’s NPR station.

A West Side Story: How to Traumatize a Community

For residents of Police Beat 1122 on Chicago’s West Side – and for all who watched on TV or social media – the killing of Dexter Reed last month after he was stopped for an alleged seatbelt violation was a vivid reminder: Such violence could happen to them at any time. Continue reading…

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Have you checked your addiction risk score lately?

Sorry, that was a trick question. Because 1) you probably didn’t know you had one (most Americans do), and 2) you can’t check it (it’s proprietary).

Your addiction score is an algorithmic assessment of your risk for opioid addiction. Doctors are encouraged – in some cases, required – to check it before prescribing painkillers to make sure that their patients aren’t at high risk of opioid addiction. The intention behind addiction scores may be good. How they are determined and used is a problem, Maia Szalavitz writes in a guest opinion essay for the New York Times.

NarxCare, which is now used by most state prescription monitoring databases, major hospitals and pharmacy chains, apparently generates risk scores by comparing data on the number of doctors someone sees, the pharmacies they visit and the prescriptions they get with information on patterns of behavior associated with doctor shopping and other indicators of possible addiction.

Szalavitz cites research showing that about 20 percent of the time, people flagged as doctor-shoppers by this kind of prediction scoring actually have cancer: They typically see multiple specialists, often at academic medical centers where teams of doctors are writing prescriptions. For a 2021 Wired story on NarxCare, Szalavitz spoke with patients who were left in excruciating pain as a result of their scores. One said her opioids were stopped in the hospital and she was then dismissed from care by her gynecologist during treatment for painful endometriosis because of a high score. She didn’t have a drug problem; her score seems to have been elevated because prescriptions for her two rescue dogs were recorded under her name, making it look like she was doctor-shopping. Another patient had his prescription for addiction-treatment medications rejected by pharmacies, even though it’s the only treatment proven to reduce overdose risk.

Because the NarxCare algorithm is proprietary, there is no way to know the exact reason for a rejection. Nor is there a way to appeal a doctor’s decision to expel a patient or to obtain post-surgical opioids from nurses or pharmacies.  Szalavitz is particularly worried about another addiction prediction tool named AvertD, a genetic test for risk of opioid use disorder that was approved by the FDA in December despite the unanimous opposition of its advisory committee. Research suggests that genetic ancestry, particularly from Africa, might lead to a higher risk score when there is none. “It’s not hard to imagine a dystopian future of unaccountable algorithms that render some people forever ineligible for pain care with controlled substances,” Szalavitz writes.

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Philanthropy’s ‘uneasy journey’ to supporting behavioral health

Story has been updated to correct an editing error in the second paragraph on the portion of philanthropic funding that went to mental health from 2015 to 2018.

Back in 2020, some sobering numbers emerged. Research from the Center for High impact Philanthropy found that from 2015 to 2018, funding for mental health made up 5% of foundation spending on healthcare and just 1.3% of overall foundation giving.

Now a new look at these challenges has been published in the Foundation Review. It finds that foundations and corporate grantmakers are keenly interested in helping, but have had a tough time entering the field.

For their qualitative study, “Philanthropy’s Uneasy Journey Into Mental Health Grantmaking” co-author Anna Bobb and her colleagues conducted interviews with behavioral health grantmakers from 17 foundations and explored two basic questions: What were their experiences? And for foundations thinking about making behavioral health grants, what considerations should they weigh?

The challenges are daunting: Some, for example, wanted to support community health clinics but encountered difficulty because the clinics were bureaucratic, unpredictable, and not used to working with foundations. Grantmakers wanting to fund specific services found it challenging because behavioral health interventions are so tied to diagnosis, age, geography, class and culture. Stigma meant that data on prevalence of behavioral health disorders in communities was unreliable, and the marginalized groups that some grantmakers wanted to focus on turned out to be receiving more of their treatment in jails than in community clinics.

Foundations had more success funding public awareness campaigns, general wellness initiatives, and early-intervention programs in schools, although they faced confusing and sometimes stringent requirements that frequently varied from district to district even within the same community. The interviewees recommended that foundations wanting to support behavioral health engage in advance with subject matter experts. They also suggested embracing “uncomfortable levels of ambiguity,” since effecting change in behavioral health is so difficult that outcomes measures may not meet benchmarks and goals. And they encouraged foundations to take risks, like supporting testing of early-stage, yet-to-be proven approaches, because innovation in behavioral health has been viewed as slow and often exclusive to academia.

Bobb, the founder and managing partner of Vreds Philanthropy, wasn’t surprised by the findings but believes that things will improve. “The underlying system is very flawed and that makes grantmaking more challenging,” she told MindSite News. Bobb said she knows of multiple grantmakers who wanted to support behavioral health initiatives but did not, especially after watching colleagues’ programs struggle or fail. “Fortunately, we are seeing more and more grantmakers enter the mental health philanthropy field with well-developed strategies aligned with their mission and intent,” she said in an email.

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Swifties support each other in recovery

Four times a week, the 700-and-counting members of Swift Steps, a support group for Taylor Swift fans who are overcoming addiction, get the chance to meet virtually on Zoom  to help each other get through another week. The brainchild of Julianne Griffin, a certified peer specialist with a day job in finance, it uses a mix of Swift’s songs, lore, and guest speakers to open conversations about tough topics in recovery.

Griffin is the founder of Blank Space Recovery (“where we fill in the blank space as a team”), a recovery mentor service.  She started taking opioids for back pain, survived on overdose on Dec. 13, 2015 (yes, Taylor Swift’s birthday) and then got sober with the help of medication-assisted treatment. She attended 12-step meetings but stopped going after a year because people in the group kept insisting that she wasn’t really sober because she was taking medication. Last May, Griffin tailgated an Eras Tour concert in Philadelphia and afterward thought: “What if there was a recovery community with the vibe of a Taylor concert, where everyone’s accepted?” as she told the Philadelphia Inquirer.

“It’s brilliant,” said Eric Zillmer, a neuropsychology professor who worked in hospital recovery units and now directs Drexel University’s Happiness Lab. “People with substance use disorder can feel alone,” he told the Inquirer. “To create a platform where people feel comfortable sharing under a cultural phenomenon driven by authenticity is fantastic.”

Cindy Shearer, who lives in Grand Rapids, Mich. and has been in recovery from alcohol addiction since 2022, attends Swift Steps video meetings regularly. “Knowing that everyone has this obsession with Taylor, there’s no judgment factor about anything,” she told the Inquirer. Two years ago, listening to Swift’s songs made her feel less lonely. Now the group reminds her of how far she’s come. “It’s like a gateway. We build this connection over Taylor Swift,” she said. “Then we have the harder conversations.”

In a Zoom room filled with more than a dozen Swift fans in recovery from drug and alcohol addiction, Griffin interprets the first verse of her song “Style,” as a powerful metaphor about self-sabotage and the compulsion to use. “We’re all living by Taylor’s example. She’s not scared to be messy,” Griffin told the Inquirer. “In recovery, we have messy paths. We have regrets, and that’s OK. We can turn them into something better.”

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Drug overdose deaths and the 2024 presidential election

In recent years, tackling the overdose crisis in the U.S. has been a rare example of broad bipartisan consensus. Congress by lopsided margins approved appropriations for a range of state and federal programs, from expanding treatment to increasing access to the overdose reversal medication naloxone. Addiction and opioid overdoses affect all communities, after all, allowing more lawmakers in both parties to see them as a crisis that warrants a public health, rather than strictly law enforcement response – an upbeat vision that with enough focus on prevention, treatment, and harm reduction, lives can be saved, and communities restored.

It may not last, writes Brendan Saloner, a professor at Johns Hopkins Bloomberg School of Public Health, in a commentary for JAMA. With a presidential election approaching, the optimistic, bipartisan consensus supporting public health programs risks being overshadowed by other polarizing issues.  Every leading candidate in the Republican presidential primary went after President Biden, blaming him and a perceived lack of border security for fueling the flow of fentanyl from Mexico. In public opinion polls, Republicans say opioids are the nation’s top public health threat, while Democrats say gun violence is more serious.

But some residents of deep blue cities have also soured on drug reform efforts and clamored for more police enforcement as the numbers of homeless people and opioid overdoses have exploded. The Biden administration has turned a blind eye to harm reduction programs like the overdose prevention centers that opened in New York City in 2022, tacitly allowing them to operate. But they would likely risk federal prosecution under a future Trump administration, as they did in the last one.

“Taken together, the opportunity space for progressive drug policy may seem especially narrow heading into the 2024 election,” Saloner concludes, while adding that overdose deaths are not an intrinsically partisan issue and that “it still remains possible to harness optimism around public health approaches to the overdose crisis.” But my reading of his article is that this is unlikely.

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In other news…

In “An Employer’s Week-by-Week Guide to Mental Health Awareness Month,” business consultancy JD Supra offers some detailed suggestions. From May 1 to 3, employers can “start the conversation” by offering some data – like the fact that 36% of workers noticed their mental health suffers because of work demands, according to a recent NAMI survey. From May 6 to 10, workplaces can “support working parents and minors” with seven practical recommendations such as helping create support groups for parents. More strategies are presented for the rest of the month.

Mental illness costs the economy $282 billion annually, equal to a typical recession, according to a working paper from the National Bureau of Economic Research summarized in a Yale University press release. The cost is about 30% higher than previous estimates of the overall cost of mental illness on the U.S. economy, the researchers said. While earlier wirj  focused on income loss due to mental illness and the costs of treatment, the new study also examined additional economic data, for example, by taking into account that  people with mental illness consume less, invest less in housing, stocks and other assets, and may work in less-demanding/lower-paying jobs.

Was Moses high? At God’s instruction at the top of Mount Sinai, Moses inscribed on stone tablets what became known as the Ten Commandments. It was an extraordinary moment even by biblical standards. Moses had been fasting and was clearly in an altered state of consciousness when God appeared to him, scholars say. But was Moses also high? An Israeli religious scholar, Benny Shanon, suggested the idea some years ago and it’s drawn a fair amount of attention. In any case, many faiths have made use of the psychedelic properties of mushrooms and other natural substances to enhance spiritual experiences. As the New York Times reports, among the advocates pressing New York state legislation  to expand access to psilocybin is at least one Jewish nonprofit. “There has been a long, documented history of humans interacting positively on religious, spiritual and cultural grounds with psilocybin,” said Aaron Genuth, president of Darkhei Rephua.

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If you or someone you know is in crisis or experiencing suicidal thoughts, call or text 988 to reach the 988 Suicide & Crisis Lifeline and connect in English or Spanish. If you’re a veteran press 1. If you’re deaf or hard of hearing dial 711, then 988. Services are free and available 24/7.

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