Once more unto the breach, dear friends: Gearing up to defend healthcare access at Health Action 2025

Families USA executive director Anthony Wright

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.**

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With regard to the stakes, FUSA’s new director, Anthony Wright, pointed out in the opening plenary that unlike in 2016, Trump in 2024 ran away from ACA repeal (which proved to be a political buzzsaw in 2017-18). Now, however, Republicans are attempting “behind-the-scenes de facto repeal” —stealth repeal, focused mainly on Medicaid. Cuts on the table to fund making the Republicans 2017 tax cuts permanent include repeal of funding for the ACA Medicaid expansion (a 90% federal match rate for those rendered eligible by ACA expansion criteria), as well as cuts that go far beyond, collectively estimated by Republican leadership at $2.3 trillion over ten years.

“Our job,” Wright said, “is to be clear: the American people did not vote for cuts to Medicare or Medicaid or the ACA…that’s the opposite of what people voted for. These programs are popular — and their proposals, if known to the public, are not. The blowback from efforts to repeal these wildly popular programs should be swift and intense.”

As to the odds, on the one hand, Republicans currently have just a 5-member majority in the House, versus a 59-member spread in 2017, and a 53-47 margin in the Senate, compared to 55-45 votes in 2017. On the other hand, as several speakers pointed out, Republicans are likely to be more subservient to Trump this time around. And that was before Trump froze payment of funds appropriated by Congress for thousands of programs this week, with full approval of House Budget Chair Tom Cole and House Majority Whip Tom Emmer.

While the extent to which Republicans in Congress remain responsive to the needs and demands of their constituents (corporate as well as individual) remains unknown, the playbook for confronting them with those needs and demands is well-known — and was executed in 2017. As Melanie Fontes Rainer, former director of the Office of Civil Rights put it, “We’ve been here before, and we’ve been successful.”

As someone once said, “Courage is having done it before.”

As to how it’s been done and must be done again, several recurring themes emerged.

Be quick, don’t be subtle: Ann Dwyer of Georgetown University, formerly senior health counsel to the Senate Finance Committee, warned that Republicans are aiming to move quickly on a reconciliation budget resolution that will set broad spending targets, likely to require massive cuts to Medicaid. While incoming majorities invariably vow to move quickly, and often fail, Dwyer stressed that Republicans learned their lesson from the failure to pass ACA repeal, an effort which dragged from March to late July 2017 (or into September, if you count the Graham-Cassidy effort that never came to a vote). They accordingly formed and passed their massive tax cut bill in two months at the end of 2017.

Because a budget resolution sets spending targets rather than specifying measures, such as imposing per capita caps on federal Medicaid funding, ending the special match rate for the ACA Medicaid expansion, or mandating work requirements for Medicaid enrollees in all states, Dwyer stressed that advocates now should not get into the weeds as to how these individual spending cuts —all totaling in the hundreds of billions of dollars over ten years — work, or which populations will be affected. Under spending cuts on this scale, “No one is protected. States will cut payment rates and benefits.” Groups representing various constituencies — the disabled, seniors, people with substance use disorders — must present a unified front (e.g., against false Republican claims that the ACA expansion, which extended Medicaid eligibility to all adults with income below the 138% FPL threshold, drains resources from the disabled and other groups). The message must be: denying care to some is denying care to all.

Attacks on targeted groups are attacks on all: So said keynote speaker Sarah McBride, the first openly trans member of Congress:

As we defend individual communities, as we defend access to individual kinds of treatment, we also have to be clear how inextricably linked these fights are. Every time they come for healthcare for trans young people, every time they come for healthcare for immigrants, we have to make clear that when they are doing that with their left hand, with their right, I guarantee you, they are going to pick the pocket of American workers. I can guarantee that they are working to privatize Social Security and Medicare, that they are working to undermine reproductive freedom, that they are working to line the pockets of their wealthy friends and major corporations including big pharma. We have to make clear that these attacks are not only harmful but connected, that they are all part of the same strategy to undermine health access in this country.

Elena Hung, co-founder of Little Lobbyists and mother of a child with acute medical needs, struck a similar note. Looking back at the fight against ACA repeal and massive Medicaid cuts in 2017, she said, “The way we won is by coming together. When we fight for the most vulnerable among us [e.g.,], for children with complex medical needs — if we fight for them, we fight for everyone. If we start dicing it up, I promise you some of us will get left behind.”

Breakthrough potential: Wright stressed that the public programs that provide health coverage all have broad public support, and that access to affordable care is an issue that “people care deeply about” Looking back at the 2024 election, Wright said, “If Americans voted for anything, it was affordability — and people have been screaming about price of healthcare for decades. Healthcare is therefore an issue with “breakthrough potential.” The fight about healthcare is the fight about whether we care for one another.” (A plenary session focused on “lessons learned from the last 5 years of the national movement to reign in pricing abuses driven by medical monopolies and will lay out a roadmap for advancing the movement.”)

Educate legislators: Dwyer stressed that there has been a lot of turnover in Congress of members and staff alike, and that not only many staffers but many members “know nothing about Medicaid.” In a session focused on Medicaid defense, Bethany Lilly, executive director of Leukemia and Lymphoma Society, similarly asserted that many staffers are ignorant about the program; for example, they may not recognize that a Medicaid program branded by the state, such as PeachCare in Georgia, is in fact Medicaid. Education about the extent to which some 79 million enrollees depend on Medicaid and CHIP entails both large-scale action, like that of the advocates who got themselves dragged out of the Capitol in their wheelchairs in 2017, and individual encounters, such as people stopping their reps in an airports, saying, “ I have a family member on Medicaid — you can’t cut it.”

Lilly, like many conference speakers, stressed that in 2017, “Storytelling made the difference.” Many advocacy groups, including Families USA, collect narratives from their members and bring program beneficiaries to meetings with elected officials. “You never know who will flip any single member,” Lilly said.

On the state level, Matthew Slonaker, executive director of the Utah Health Policy Project, recounted that what clicked with legislators in Utah, one of the states hit hard by the opioid crisis, was stories about substance abuse treatment provided by Medicaid. (According to KFF, as of 2017, Medicaid covered almost 40% of U.S. adults with an Opioid Use Disorder.)

Allison Orris of CBPP stressed that the search for allies in defense of Medicaid can bring together strange bedfellows: “different messages from people you work with” might have an effect on legislators. In some cases at least, to move legislators, “You don’t have to be loud in public.” Flipping a critical mass of Republicans in Congress may be doable: “their margins in the House give us optimism.”

Tap institutional allies: In his keynote, Wright stressed that hospitals and insurers have huge stakes in Medicaid, recounting demonstrations against ACA repeal on hospital steps in California in 2017. He reminded listeners that the fight was centered not just at the Capitol and White House: that congressional district offices, clinics, hospitals, church basements, and union halls are all on the front lines.

Medium vs. message: Nourbese Flint, president of All Above All, warned that Democrats are “behind the 8-ball” with respect to combating disinformation and getting their message out. She noted that all major social media platforms are MAGA-friendly; that “disinformation is free”; and that if progressives don’t know where to find the politically disengaged, “others are ready to take them in.”

In a briefing for journalists, Wright also acknowledged progressives’ communication deficit, asserting, “we need to be better, be creative, try different things —podcasts, different platforms, find where people are.” At the same time, he added that he still believed in the value of grassroots organizing. And, he added, “healthcare may be the best issue to break through. It’s something that unites people, and can sometimes peel off some of those tempted by culture war issues.”**

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* Families USA and its longtime director, Ronald Pollack, played a pivotal role in the grassroots mobilization without which, according to Nancy Pelosi, the ACA could not have passed.

** The conference ended before Trump’s Office of Personnel Management launched its unconstitutional massive spending freeze, which made clear that a huge array of vital healthcare and social welfare programs — including Medicaid — are plainly at risk administratively as well as legislatively. That impoundment is currently stayed by the D.C. Circuit court.

*** While several speakers noted progressives’ difficulties breaking through the fast-changing information/disinformation environment, none that I heard offered specifics. I had to miss a workshop on communications strategies provided by staff at the Alignco consultancy, but judging from the session description it was focused more on the content of messages than the mode of delivery.