For much of 2014, Tiffany Koehler had a nasty cough she couldn’t seem to shake. Consumed by a grueling Republican primary campaign for a seat in the Wisconsin state legislature, she chalked it up to fatigue from the race. But after a series of tests in 2015, Koehler learned the real cause: stage four non-Hodgkins lymphoma.
At the time, Koehler had health coverage through the state insurance program BadgerCare, a program enabled by the Affordable Care Act’s Medicaid expansion although funded separately. Koehler says her insurance paid for all the necessary blood tests and chemotherapy treatments, and she’s now in remission. But the American Health Care Act (AHCA), the Republican plan to replace Obamacare that is scheduled for a vote in Congress Friday afternoon, could gut ACA provisions like state Medicaid expansion and the requirement that insurers cover people with pre-existing conditions.
The prospect has turned Koehler into an activist against her own party, one of a growing number of grateful patients across the ideological spectrum who feel compelled to take a stand. “People like myself, survivors, we can’t afford this new bill that they’re proposing, because they want to remove mandated provisions about what can be covered,” she says. “This is not what President Trump campaigned on. He said everyone would have insurance and it would be the best plan ever. And it’s not.”
Many of Koehler’s fellow patient activists have little experience as political crusaders. They are survivors, like her, or current patients facing the scary thought of losing immediate care, and the spouses, parents, siblings, friends, doctors, nurses and others who love them. Their cause may be aligned with the seasoned protesters who flooded the streets for the Women’s March or Black Lives Matter rallies, but their reasons are deeply and entirely personal.
After Laurie Merges was laid off from her sales job in 2015, the 47-year old single mother of three wasn’t sure how her son would get the treatment he needs for his Asberger’s syndrome. But the family qualified for coverage under Ohio’s Medicaid expansion program enabled by the ACA. Had Republican Gov. John Kasich not expanded Medicaid in 2013, her children would have been eligible but Merges wouldn’t have been covered. Two months later, she was diagnosed with stage 3 breast cancer.
“It became not just a safety net, but a lifesaver,” she says of her insurance, which has covered 16 rounds of I.V. chemotherapy, 33 rounds of radiation, and a bilateral mastectomy. “I would never in a million years be able to afford this.”
Merges says she had never been the type to chant and march, but she felt the threat to her family’s health gave her no choice. “I became an activist,” she says. “This is not just some abstract other person, these are actual real-live people whose lives are being affected.”
So she started showing up. Merges went to the Women’s March in Cleveland, then to Washington D.C. with a delegation from the American Cancer Society’s Cancer Action Network (ACS-CAN). And in February, she sat down with aides to Republican Senator Rob Portman to explain what would happen to her and her children without Medicaid expansion.
Those visits are part of a coordinated effort by advocacy organizations to mobilize their growing army of fledgling activists. The American Diabetes Association says more than 15,000 new patient advocates have joined their effort to prevent repeal of the ACA, while ACS-CAN counts more than 12,300 new activists since January. “If you’re a patient and you’re relying on a state exchange plan or you’re relying on Medicaid to pay for your treatment, it’s not hyperbolic to say this is life of death,” says ACS-CAN strategist Erin O’Neill. “It’s easy to be dismissive of a statistic. It’s very hard to be dismissive of a person to their face.”
Major medical groups like the American Medical Association, the American Hospital Association, and the Association of American Medical Colleges have come out in opposition to the bill, and the threat of repeal has prompted some medical professionals to consider running for office. But the most persuasive voices against Obamacare repeal may be the sick or recovering constituents themselves.
In February, Portman joined four other Republicans from states that expanded Medicaid under the ACA––Lisa Murkowski of Alaska, Shelley Moore Capito of West Virginia and Corey Gardner of Colorado––to publicly criticize the AHCA for creating uncertainty for those covered by expanded Medicaid.
The fate of the GOP replacement bill depends on convincing two distinct groups of Republicans to support the measure: More centrist Republicans, who are wary of backing a bill that the Congressional Budget estimates will cost more than Obamacare while covering fewer people, and the hard-line members of the House Freedom Caucus, who think the AHCA is too expensive and doesn’t do enough to roll back federal coverage mandates. Concessions to the conservative wing are likely to further enrage the growing contingent of patient activists, many of whom confronted their representatives at combative town halls in recent months.
This new activism possesses the two factors that tend to drive grassroots causes, says Marshall Ganz, a veteran organizer and senior lecturer at Harvard’s Kennedy School of Government: challenge and hope. In this case, he says, the challenge posed by Obamacare repeal is a”sense of imminent loss that’s not theoretical, it’s experiential.” And the hope comes from an established pathway to action laid out by new activist groups like Indivisible, which has created a roadmap for the Trump opposition based on Tea Party tactics. “You put those two things together, you’re going to get some powerful reaction,” Ganz says. “You get people to act not by making something easy but by making it valuable.”
The possibility of losing her health care was what motivated Arkansas resident Kati McFarland to move from griping on social media to confronting her senator in an exchange that quickly went viral. McFarland, 26, suffers from Ehlers-Danlos syndrome, a rare genetic condition that causes joint dislocations, heart issues, and chronic fainting, which requires her to use a wheelchair.
Realizing that her self-described “slacktivism” wasn’t amounting to much, McFarland found herself at Sen. Tom Cotton’s town hall in late February, asking him to commit to replacing the ACA with an equally robust health plan. “Without the coverage for pre-existing conditions, I will die,” McFarland told the Senator. “That is not hyperbole. I will die.” She asked everyone at the town hall who would be impacted by the ACA repeal to stand up. Hundreds of people stood, but she could not. It was a powerful moment that quickly spread online.
This week, Cotton said he would not support the AHCA if it reached the Senate in its current form, though his primary concern was that it failed to adequately address rising premiums and deductibles.
No matter the outcome of the House vote, the Americans who feel the ACA has saved their lives are not sitting idly by as Congress debates a replacement. In Wisconsin, Koehler is hard at work lobbying every member of the Wisconsin delegation, including House Speaker Paul Ryan. She says she wants them to know her loyalty to fellow cancer patients outweighs party ties.
“I’ve had so many friends who have died during their cancer fight, and I feel like I owe it to them,” she says. “People get sick, people need to have all the tools available to fight. This is not the time to play politics.”
Correction: An earlier version of this story incorrectly quoted Harvard lecturer Marshall Ganz. He says anti-Trump activists are driven by a feeling that their efforts are “valuable,” not “plausible.”