Triage for U.S. healthcare: Families USA's Stop the Bleed campaign

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In the United States today, as rising healthcare costs for individuals and government alike approach a crisis point, major systemic change enacted by legislation feels utopian. Behemoths stalk the healthcare landscape: Mega-insurers control major PBMs, large numbers of physician practices, and tech tools to maximize billing; hospital systems dominate their regions; pharmaceuticals maximize pricing power over fractured payers; private equity firms roll up major physician specialist practices within target markets and dominate target services like hospice and dialysis.

These powerful actors deploy our corrupt campaign financing rules to deter elected officials from both parties from enacting legislation that would fundamentally threaten their current revenue sources. A single-payer system, or a strong public option available to all, or a national system of all-payer rate-setting, are not likely to happen this side of revolution (including, on the hopeful side, political revolution).

In tacit acknowledgment of those facts, Families USA has launched Stop the Bleed — almost literally a triage campaign to provide some cost relief to the people of this country. The campaign invites healthcare advocates — and anyone who wants to sign up — to ask candidates for electoral office from both parties and at any level what they propose to do to control healthcare costs.

Health Action 2026: Defense, and a glimmer of new vision

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Families USA launches a campaign

The mood was grim but determined at Families USA’s Health Action 2026 conference in D.C. last week. Broadly speaking, the focus was dual: mitigating the harm wrought by Republicans’ $1 trillion-plus cuts to Medicaid and the ACA marketplace (and RFK Jr.’s perversion of federal public health agencies), and looking forward toward a positive agenda for making healthcare affordable for all Americans.

Mitigation is largely about slow boring on hard boards: state agencies riding herd on the managed care organization (MCOs) that run most of their Medicaid programs, and advocacy groups riding herd on state agencies to drive that accountability.

The forward-looking agenda was not about ultimate visions for the U.S. healthcare system, such as single-payer or “Medicare for all who want it.” Rather, the focus, mainly in the plenary session “Building the Health Care System We Deserve,” was on spotlighting the extent to which the drive to maximize profit permeates and corrupts all main sectors of the healthcare system — hospital systems and physician practices, insurance and pharma.

That spotlight was synced with a campaign Families USA kicked off with the conference, Stop the Bleed, which aims to challenge every candidate for office in 2026 to explain what they would do to contain healthcare costs — not just what individuals pay, but what all payers collectively pay.

Defend the ACA Medicaid Expansion directly

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The Maginot Line

Forgive me for slipping into Ancient Mariner mode here, but I must again voice my obsessive plea to elected Democrats, healthcare advocates, and all those who don’t won’t to see 15-20 million Americans uninsured: Defend the ACA Medicaid Expansion! Explicitly!

As documented in my last two posts (1, 2), House Republican leadership is almost certainly coalescing on defunding the expansion — that is, ending the 90% federal match rate for low-income adults rendered eligible by the expansion’s criteria — 21 million of them at last count, as of June 2024. Since Trump ordered his troops to “cherish” Medicaid and not “touch” it while also commanding passage of a budget resolution that would cut hundreds of billions of dollars in Medicaid funding, they justify this $650 billion cut in the name of “protecting” Medicaid for children, the disabled, and elderly enrollees — those Medicaid was “originally designed for.”

By long reflex, stakeholders defending Medicaid more often than not mount their defense in the name of the same vulnerable groups Republicans are vowing to “protect.”* Here is the core defense in a letter from Families USA, co-signed by more than 300 advocacy groups, to Senate Majority Leader John Thune, asking him to reject the house budget resolution:

Girding for healthcare battle at Families USA's Health Action 2025

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The Families USA conference convened in February 2017 felt a bit like the U.K. after the Dunkirk evacuation — an all-hands-on-deck mobilization to prevent Republicans from tearing down what many of those present* had worked for decades to build (the ACA, and Medicaid as it had evolved over decades).

It was my first Health Action conference, and I was heartened by the concentrated expertise and determination of the speakers — activists and advocates, healthcare scholars, former government officials — who shared a wealth of practical knowledge as to how to move elected officials and mobilize people with stories to tell.

Though I’m not a Lord of the Rings fan, I was reminded of a scene where the fellowship accompanying Frodo and his fellow hobbits on their quest to deep-six the ring of power is assaulted by a pack of super-wolves. As the wolves circle, there’s this exchange:

My heart’s right down in my toes, Mr. Pippin,’ said Sam. ‘But we aren’t etten yet, and there are some stout folk here with us. Whatever may be in store for old Gandalf, I’ll wager it isn’t a wolf’s belly.’

The dominant chord was struck by incoming FUSA executive director Frederick Isasi: "Our action should lead to inaction" — that is, failure to pass a repeal bill. That dictum proved prophetic.

At this year’s conference, the mood was grimmer but the determination was the same, as was the focus on grassroots action. As to the legislative prospects compared to 2017, both the stakes and the odds are hard to gauge — they appear both better and worse.**

Maximizing the ACA Innovation Waiver: Biosimilar silver loading, anyone?

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Ask, and it shall be given

The advocates for more affordable health insurance at Families USA are asking the Biden administration to loosen up the Catch-22 that confronts states seeking to take advantage of the ACA's section 1332 innovation waivers.

1332 waivers enable states to propose alterations to virtually every feature of the ACA marketplace in pursuit of more affordable and effective coverage. The alternative scheme must cover at least as many people at least as comprehensively as the existing marketplace, and must do so without increasing the federal deficit. 

As currently interpreted, the deficit-neutral requirement presents a Catch-22: if the state's alternative scheme ends up costing more because more people sign up, the state is responsible for the excess costs, even if the coverage costs less (or no more) per person than the exiting ACA marketplace. 

How many newly uninsured? Families USA and the feds paint different pictures

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Families USA released a report this week estimating that 5.4 million adults newly unemployed by the pandemic as of May are also becoming uninsured.

The estimate is based on data and analyses concerning  1) the number of people who have lost jobs (BLS), 2) the likely percentage of newly unemployed who have lost access to health insurance, and 3) the percentage of newly unemployed in the ACA era (2014-2018) who have found other insurance, including Medicaid and marketplace (Urban Institute).

The analysis boils down to a fairly simple equation: about a quarter of those who lose jobs do not find their way to job-based insurance through a family member, Medicaid, marketplace coverage or COBRA. Much higher percentages of the newly unemployed are estimated to become uninsured in states that have refused the ACA Medicaid expansion (42.5%) than in expansion states (22.6%).

5.4 million uninsured adults equates to about a 2.6 percentage point increase in the uninsured rates for Americans aged 18-64.  Based on the most recent National Health Interview Survey (Jan-June 2019), that would suggest an uninsured rate of about 16.3% for ages 18-64. As I've noted recently, more immediate survey data seems to indicate less severe increases in the uninsured population. A Commonwealth Fund survey of about 2300 adults conducted May 13 through June 2 seemed to indicate that a bit less than 2% of the population had recently become uninsured.

More strikingly, the experimental new Household Pulse Survey updated weekly by the CDC -- a joint project of the Census Bureau and National Center for Health Statistics -- shows comparatively little movement since its launch in the week of April 23, when it recorded a national uninsured rate of 12.6%  for ages 18-64 -- more than a percentage point lower than the 2019 NHIS estimate. The weekly updates have been quite volatile but on the whole have ticked upward, reaching 13.5% in the week of June 25 (there'll be another update tomorrow).  Estimates for individual states, shown below, average three percentage points higher in Pulse than in the FUSA study, and vary widely.

Frederick Isasi: Three healthcare trends, three power struggles

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At Families USA's Health Action conference last week, FUSA executive director Frederick Isasi, in a presentation for attending media, identified three healthcare trends for 2020.  It struck me that at the heart of each enumerated "trend" is a looming political battle, each of them central to the U.S.'s current existential struggle between oligarchy and renewed democracy. Let's look at each in turn.

1. Value. Describing Americans' demand for "value" in healthcare, Isasi was not speaking primarily about "value-based care," i.e. outcomes-based alternatives to fee-for-service payment. He focused rather on out-of-control prices paid to providers that are rendering care unaffordable to tens of millions. He pointed out that healthcare costs have climbed 600% in the last 40 years and nearly tripled as a percentage of GDP, rendering care unaffordable for tens of millions.  "Almost half of Americans say they have trouble affording healthcare," he said. "People are more scared of paying for getting sick than they are of getting sick."

As to the cause of runaway costs, Isasi blamed the market power of the various healthcare industries: "it's a highly subsidized sector with almost no government oversight." The struggle to hold down costs is less technocratic than political: forcing powerful industries to accept curbs on their pricing power.  Potentially enabling that struggle is a sea change in public attitudes: While coverage has eroded in recent years, Isasi noted, the ACA has wrought a sea change in Americans' expectations: "acceptance of the right to access is a new societal norm."

At Health Action 2020: Once more unto the breach, dear friends

I've had my yearly fix from Health Action 2020, Families USA's annual conference for healthcare advocates, policy people, scholars, and, most importantly I think, front-line ACA enrollment counselors.

I attended my first Health Action conference in January 2017, days after Trump was "sworn," aka perjured, into office. Republicans were promising swift ACA repeal -- "repeal and delay" was their watchword of the moment, meaning they would sunset the marketplace and Medicaid expansion swiftly and fill in the details later. The conference was composed of several hundred people devoted to preventing that. "Our action should lead to their inaction," declared incoming FUSA president Frederick Isasi. And mirabilis, that's exactly what happened.

In 2017 I felt keenly that the conference was run and attended by people who had devoted years or decades to expanding healthcare access in the U.S. -- all now faced with the prospect that their work would be unraveled. I wrote about an emanation of collective strength, institutional and individual, from the participants.  And this year I kept flashing back.

Since the impeachment process got into gear this year, I have often felt that American democracy is going down. It's terrifying to watch the entire Republican party fall in behind Trump to neuter Congress's power to hold a corrupt would-be autocrat accountable for on-the-record abuse of power.  Once again, the people on the stage and in the room reminded me that despite the grave threat to democracy posed by a party in power that's given up on democracy, the country has huge reserves for resistance: people who know how to be free; institutions that know how to wield political influence in service of the common good; courts that at least sometimes uphold the rule of law.

Elizabeth Warren's healthcare toggle switch: A two-year review

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An hour ago I stumbled on a two year old post teasing out Elizabeth Warren's ambivalence about Bernie Sanders' Medicare for All bill, as expressed on the occasion of her co-sponsoring it. That's led me to reflect on the apparent cross-currents in Warren's mind drawing her alternately toward and away from fast-track hard-core single payer.

Here are some longstanding key points in Warren's healthcare stance, fleshed out in the links provided at bottom.

1. Warren's entire political outlook and diagnosis of the U.S.'s economic and political woes is founded on her understanding of the impact of medical debt and other costs of illness (e.g., lost wages) on ordinary Americans.

2. Warren's outrage against banks and other financial institutions that she views as helping Americans "drown in debt,"  taken up several notches in the wake of the 2008 financial crisis, transfers easily to outrage against health insurers -- which are, after all, financial institutions of a sort.

Blue states willing to invest in ACA marketplace: Help those over 400% FPL or under?

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From the beginning, the ACA's apparent Achilles heel has been the plight of those who must look to the individual market for coverage but earn too much to qualify for subsidies.

I say "apparent" because the marketplace is not exactly a roaring success among those eligible for subsidies. But bear with me through a short history of the highly visible plight of the unsubsidized.

Beyond healthcare reform at Health Action 2019

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.

Health Action 2017: Times that try our souls

I attended Families USA's annual Health Action conference last week and found it deeply moving. My overview is up on healthinsurance.org.  Here's an upshot of sorts:

The conference, to my mind, fulfilled the deepest purpose of such events. It was not so much a matter of convincing the troops that the goal of preventing the repeal of the ACA and further evisceration of Medicaid through block-granting is attainable. Some marquee speakers argued forcefully that those goals are achievable, others implied that the odds are long.

Strength lay more in the collective demonstration of expertise and commitment, evident as much in breakout workshops as in plenary sessions...

Then, zooming out to the plenaries, a highlight was outgoing (outgone?) acting CMS head Andy Slavitt's call to the assembled healthcareniks to respond to