For the past three Januaries, it's been my delight to attend Families USA's annual Health Action conference, which brings together healthcare advocates, enrollment counselors, scholars and policymakers to analyze the functioning and malfunctioning of U.S. healthcare and report on plans to improve access and delivery.
As my experience of the conference dates to the dawn of the Trump era, it's wedded in my mind to the high drama of resisting massive rollback of the federal commitment to make healthcare affordable to most (we're still far from all) who make their home in the U.S.
In 2017, the dominant chord was to my mind struck by incoming FUSA executive director Frederick Isasi: "Our action should lead to inaction." That is, ACA defenders needed to slow down Republicans' legislative drive to repeal the ACA to make it run aground on its own contradictions.
That...happened. The 2018 conference celebrated, reliving miracles wrought by the Little Lobbyists, Indivisible, ADAPT and others who brought home the human cost of repeal. It was also a forum for feeling out the shape of healthcare reform to come. I wrote last year that the tea leaves seemed to shadow forth a Medicare-like public option that employers and employees could buy into, as Jacob Hacker proposed back in 2007. That still seems to me where we're headed.
This year too had its note of triumph and promise -- beginning with a keynote from Nancy Pelosi celebrating the centrality of healthcare in the November election. Yet the really sustained focus, through three plenary sessions was on the gross inequities, based mainly on race and ethnicity, in our healthcare delivery system and beyond, in housing, criminal justice, mental health, diet -- basic conditions of life that shape health (actually, that was true last year too).
A persistent theme was that a lot more has to change than the number of people with insurance that provides access to healthcare as we know it. Another was the enormous challenge of moving equity to the center of system reform efforts.
The Equity Imperative in Health Care Transformation
The first such session was a kind of showcase for Families USA's newly launched Center on Health Equity Action for System Transformation, directed by Sinsi Hernández-Cancio, who moderated. Tekisha Dwan Everette of Health Equity Solutions gave the keynote and was then joined by a panel of social service and advocacy group heads*, along with Cara James from CMS's Office of Minority Health.
Hernández-Cancio framed the problem: "we're not in the room where it happens when it comes to payment reform..we see both the promise of system transformation and the danger of ignoring equity." Everett spoke of the difficulty of getting people to acknowledge that structural racism is the root cause of the country's gross health disparities. Dr. Joia Adele Crear-Perry of the National Birth Equity Collaborative focused on the the challenge of changing the basis of policymakers' decisions: "your government makes choices around believing that people are making bad choices. How can we get around that?" Her premise: "Health is not an individual choice"-- individuals' chronic illnesses and dysfunction are shaped by the environment.
James, from CMS, cautioned co-panelists: "You have to meet people where they are. Some people are ready to receive the "R" word, some people are not. At CMS, we've just evolved to the point where we can talk about disparities without eye roll. If you get the eye roll you've lost your audience." James later asserted, however, that the language of so-called social determinants of health "is being co-opted, not including race. We need to own the conversation."
Andrea Ducas from the Robert Wood Johnson Foundation suggested that good data visualization can help. Citing life expectancy maps that show disparities by race and region, she said, "it's hard to look at those and not make the imaginative leaps to how we got there." Adding a note of hope near the end, Everett recounted that her organization was spending time with physician practices and having some success getting doctors "to see patients in context, what's happening in the community. Once they see that, they're excited, but it's a paralyzing moment: 'what do I do with it?' We help them understand what community organizations are available to address these problems."
Jeffrey Brenner: "Our delivery system is obsolete"
The next equity-focused panel had a technocratic title (Strategies for Improving Health Care Delivery Reform) but focused very concretely on core questions of how to give the disadvantaged the treatment they need. The keynote was Dr. Jeffrey Brenner, a MacArthur Fellow made famous by a long New Yorker article by Atul Gawande recounting his pioneering work first as a solo physician in Camden New Jersey and then as founder of the Camden Coalition of Healthcare Providers.
Brenner's innovation was to concentrate resources on the small percentage of patients who accounted for a huge percentage of overall costs in the region and address their life conditions as well as their chronic care needs. He now heads a unit of United Healthcare running pilot programs to create new models of care for patients with intense medical needs. Brenner was joined on a panel with Peggy Bailey, who runs a program combining work on housing and healthcare at the Center on Budget and Policy Priorities; Dr. Rushika Fernandopulle of Iora Health, a practice that aims to "restore humanity to healthcare"; and Courtney Ham of Aetna's Medicaid MCO in Kentucky.
Brenner, who spent decades immersed in primary care for the poorest and sickest, said that work he's done to house the homeless has been "more transformative than any medical work" he's done. "Our delivery system is obsolete," he declared Examples: doctors are not trained to communicate. Mental health treatment is rife with incorrect diagnoses. "We have no treatment models to keep mentally ill people functional and productive."
CBPP's Bailey, who focuses on coordinating housing and medical services, seconded the notion. "People are complex, but the system doesn't listen. They tell us what's most important; we say, 'that's not what we do -- what's most important in this part?' You can't focus on healthcare if a person's not housed -- or not eating."
Bailey told a tale of a person with an anxiety disorder who lived in a second floor apartment and spent the night pacing, drawing neighbors' complaints Under normal circumstances, he might get warnings; the police might be called; he might be evicted. A case manager, however, could get such a person a first floor apartment, enabling him to pace all night.
Fernandopulle of Iora Health called for a flipping of the healthcare reform script. "Access to a crappy dehumanizing system is not the goal. We need the flip the order. If we fix the healthcare system, it will be easier to get access." He added, "What we've created is a huge medical industrial complex that's not serving us, it's serving itself." He called out doctors and hospitals, very much including nonprofits, for focusing on their own needs (e.g., revenue) rather than their patients'. But how to reverse that? "The only thing that will change the system is consumers' voices."
Why would a once small-scale crusader like Brenner work for a behemoth like UnitedHealthcare? Brenner spoke of a "collision" between a "small is beautiful" ideal and the fact that "it takes scale to do the job. You can't do open heart surgery as a mom-and-pop. You can't do biologics without enormous pharma companies." Running a homeless shelter, he said, is an easier business model than providing housing first to the chronically ill homeless. UHC in some programs is providing housing on its own dime to enrollees' whose hospital bills would far exceed a year's rent.
Isazi, moderating, chimed in: "Every policymaker in this country is in crisis over healthcare costs. If you can save money, they'll listen."
Brenner ended with a call for activists and policymakers to "get comfortable with incremental wins." "If you look at the last 20-30 years, the biggest wins have been incremental." Medicare Part D and CHIP, he said, worked better than the ACA. If Obama had lowered the Medicare age to 55, Brenner claimed, he could have done it in a month with broad support." Someone might have asked Brenner, given the populations he's spent his professional life serving, if the ACA Medicaid expansion wasn't a bigger win than that.
War stories from women leaders
A third session focused on the experience of women of color who lead social service and advocacy agencies: Keshia Bradford, of the Health Center Association of Nebraska; Anna Chu, National Women’s Law Center; Cristina Jiménez, United We Dream; and Monica Simpson, Sister Song—The National Women of Color Reproductive Justice Collective. Each drew on personal experience to illustrate the extent to which the perspectives of women, and in particular women of color, are needed but often marginalized in healthcare delivery. Chu said that while her Chinese parents raised a family of stereotypically successful immigrants, their experience belied the "bootstraps" myth. "We had Medicaid, WIC, we didn't do it alone...we had a community and society that chose at that point to support such policies." Jimenez recounted a high school guidance counselor whose first -- and only -- question to her was "are you documented?" Told no, she responded, "Then I can't help you." Simpson lamented, "We live in a system of white supremacy --w e're traumatized people trying to lead the traumatized."
Women of color as keynotes
Several keynote speakers reinforced the connection between bringing minority voices into positions of power and addressing the social determinants of health. Stacey Abrams spoke of the harm done to Georgia by the state's refusal to expand Medicaid. She then zoomed out -- "fourteen states have refused to expand Medicaid, and they should not be allowed to rest" -- and zoomed in, to recount that her brother, raised in a family that had no health insurance, was bipolar and never diagnosed. His untreated addiction landed him in prison, where he got clean...but after release, he had no insurance and so no treatment, and relapsed, and ended up back in prison. "Stop filling our prisons with the sick," Abrams demanded.
The history of U.S. policy doing just that was taken up by Chirlane McCray, First Lady of New York City and founder of ThriveNYC, an organization committed to improving mental health care and access in New York. McCray recounted the history of the closure of state mental health hospitals in the 1960s with the alleged intent of transitioning inmates to community health centers that never opened. "Our country has never had a fully funded community health system," McCray said -- the hospital closures were followed by decades of neglect.
Sharice Davids, a native American woman newly elected to Congress in Kansas's 3rd District, briefly recalled her own "bootstraps" story in service of two points. First, she is a product of good public schools which radical Republican tax cutting in Kansas have since defunded. Second, "My bootstrap story is not unusual -- the problem is those stories have not been in Congress." The power equation is changing, however: "As a White House intern in the Obama administration, I saw so many people who are changing the world who have a story similar to the ones we hear here" (Davids' speech immediately followed the 'women leaders' panel described above).
Davids also reinforced the central point of Nancy Pelosi's keynote: "Health care was the number 1 issue people spoke to me about on the campaign trail." There was an implicit connection between voters' core concerns and politicians whose life experiences equip them to hear such concerns.**
This year's Health Action was devoted in large part to looking beyond healthcare reform as traditionally conceived, toward societal reform. By the very structure of such events, it pointed toward the incrementalism Brenner held up as the only path to progress (leaving aside his assessment of particular legislation). The conference brings together hundreds of people working in enrollment counseling, social service agencies, legal advocacy, and political organizing. As I noted in 2017, the collective presence of such people exudes a kind of institutional strength, regardless of the manifold dysfunctions of our healthcare system and civil society.
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* Speakers in the The Equity Imperative in Health Care Transformation panel:
Sarah de Guia, J.D., California Pan-Ethnic Health Network
Joia Adele Crear-Perry, M.D., FACOG National Birth Equity Collaborative
Kathy Ko Chin, M.S. Asian & Pacific Islander American Health Forum
Andrea M. Ducas, MPH, Robert Wood Johnson Foundation
Cara James, Ph.D., Office of Minority Health, Centers for Medicare and Medicaid Services
** Overview of keynote speakers added 2/4.
Related:
Pelosi at Health Action 2019
Democrats and activists prepare health care offensive (Health Action 2018)
At Health Action 2018, a focus on racial discrimination in healthcare
Affordable Care Act supporters gird for battle (Health Action 2017)
I was spanked by a nun on a bus (Health Action 2017)
The drama of that January 2017 gathering was intense. It was convened by people who had sunk years into getting the ACA passed and implemented, staring down the barrel of a repeal that would not only undo a coverage extension to 20 million but denude Medicaid for decades to come. And yet, surrounded by people devoted to making our inefficient, Byzantine, profit-addled healthcare system work for the less powerful,
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