Kevin Carroll via Creative Commons
U.S. Representative Matt Cartwright speaks during Protect Our Care’s nationwide “Lower Costs, Better Care” bus tour. On his left is health care advocate Laura Packard.
The Affordable Care Act saved my life. I am one of many health care activists in the United States who wouldn’t be here without it.
Four years ago, I walked into a doctor’s office with a nagging cough and walked out with a stage-four cancer diagnosis (Hodgkin’s lymphoma). Without the Affordable Care Act, I could never have afforded the six months of chemotherapy and month of radiation I needed to achieve remission.
Were it not for the ACA, millions of Americans like me with pre-existing conditions would be uninsurable. And without insurance, many of us in the chronic disease and disability communities could not afford the care we need to stay alive and thrive.
We have lived through fire in recent years, wondering every day if we would lose the health care we need to stay alive.
We cannot go back to a time where insurance companies can pick and choose whether to cover the care you need, or whether to cover you at all. Our elected officials should be focused on expanding affordable health care, not taking it away.
Instead, we’ve gone through more than a decade of attacks on the ACA led by Republicans in Congress. In June, the U.S. Supreme Court issued its third straight rebuke to these efforts to kill the Affordable Care Act. However, conservative anti-health care elected officials in Congress and in state legislatures continue to try and chip away at our care, and they will not stop bringing lawsuits.
But there is a new and formidable obstacle to those who want to turn back the clock. It’s people like me who are determined not to let them get away with it.
Cancer nearly killed me, but it also forged me. The day after my first chemo appointment in May 2017, Republicans in the U.S. House voted to dismantle the ACA.
For me, staying out of the fight was not an option.
I spent six months of chemotherapy struggling through medical appointments and then leaving my couch to speak at rallies and press conferences and vigils outside my Republican Senator’s office. Rinse, repeat. I learned to expose my most personal thoughts and feelings, through writing my story in my own words and having it published locally and nationally, and sharing self-filmed videos to ever-larger audiences.
Willingly or not, people living through their own health care struggles around the country were thrust into the fire. Flipping the script on the Tea Party protests against the ACA prior to its passage in 2010, a generation of people who have lived thanks to the ACA were now here to defend it.
These include disability rights activists from ADAPT; the group Little Lobbyists for kids with complex medical conditions and their parents; health care activists organized through Health Care Voter, which I now have the honor of leading, Protect Our Care, and other groups; and existing progressive organizers through groups like MoveOn and the Center for Popular Democracy.
Those of us new to the health care advocacy movement learned how to become activists as we did the work. We shared our most painful and private health care moments in the crucible of public attention, again and again. We spoke at events and town halls, and told our stories to reporters and in our own opinion pieces in the media. In short, we refused to stay quiet.
This new movement was led mostly by women and people with disabilities, marginalized people who stepped out of the margins. Families pushed aside the stigma of relying on social supports like Medicaid, and dispelled the myths and lies surrounding government health care programs to show the real effects of cutting care. We changed minds, and we changed hearts.
Activism and the power of personal stories led to victories even when defeat seemed certain. Up to 135 million Americans under the age of sixty-five with pre-existing conditions were at risk, including families with medically fragile children and adults with chronic medical conditions and disabilities. We advocated for them as well as for ourselves, and in the process we were brought out of the margins into the community, and discovered our own power.
In July 2017, it seemed that Republicans in the Senate had the votes they needed to repeal the ACA. Using reconciliation to avoid the filibuster, Mitch McConnell’s Senate needed only fifty votes. Thanks to Susan Collins, Lisa Murkowski, and John McCain, repeal efforts went down in flames in the Senate. The Republican Party’s determination to kill it lived on, but so did ours.
In December of that year, I was thrown out of an event hosted by my U.S. Senator, Dean Heller, when I tried to ask him about his ongoing opposition to the ACA. Senator Heller is now an ex-Senator.
I spoke out against then-President Donald Trump too, only to find that he had blocked me on Twitter. Trump is no longer President and I’m still on Twitter—but he’s not.
In 2018, I founded the nonprofit Health Care Voices to organize other adults with serious medical conditions. We provide access to free training and support for activists to make their voices heard.
We have lived through fire in recent years, wondering every day if we would lose the health care we need to stay alive. But we fought back and, mostly, we won.
Repeal of the ACA did not happen through Congress, or through the courts. Many of us activists found our voices through increasing public exposure and eventually threw out of office those who had threatened our care. We already had endured so much from our bodies and the medical treatments we lived through. The callous indifference of politicians tempered the steel of our will.
New health care champions, including Congress members Elissa Slotkin, Democrat of Michigan, and Lauren Underwood, Democrat of Illinois, were motivated to run by the votes of the people they then replaced. Control of the U.S. House flipped in 2018.
In the 2018 and 2020 elections and runoffs, anti-health care Republican Senators Dean Heller of Nevada, Cory Gardner of Colorado, Martha McSally of Arizona, and David Perdue and Kelly Loeffler of Georgia all lost their seats. And we replaced President Donald Trump, who promised to repeal the Affordable Care Act, with President Joe Biden, who signed into law new health care subsidies and expansions as part of the American Rescue Plan.
I had the honor of speaking with candidate Biden at the Democratic National Convention, as part of a group of several health care activists. “Well, you beat Hodgkin’s lymphoma, God love ya, but during it all Trump was trying to rip away your coverage,” he told me. “We’re going to make sure we don’t lose that ACA.”
The battle is far from over.
Too many elected officials think of health care as a privilege, not a right. They vote for laws to restrict our care, and approve judges who will do so. So when Republicans in Congress failed to marshall the votes they needed to repeal the Affordable Care Act outright, they turned to the courts.
It looks like we won that battle, with the U.S. Supreme Court’s 7-2 ruling in the most recent case. But our health care, like our basic humanity, never should have been up for a vote. And unfortunately the opponents to our care will not give up.
In Missouri, even after the people voted for a ballot initiative to expand Medicaid to low-income people under the ACA, the state legislature refused to implement it. They had to be dragged before the Missouri Supreme Court to do their duty. And Republican legislators and governors in twelve states have refused to expand Medicaid, despite the pleas of their constituents.
But this is also a moment in which we can move forward on health care coverage, instead of clinging so desperately to piecemeal solutions. This summer, state legislatures in Nevada and Colorado joined Washington State in passing a public option, a cheaper form of health insurance in their respective states. Oregon is looking to join the wave next year, and other states may soon follow.
And nationally, Congress is putting together the Build Back Better budget bill. It would lower insurance costs for those who receive ACA subsidies.It would strengthen Medicare by including vision, dental, and hearing coverage. And it would fill in the Medicaid gap by covering the more than two million Americans in hold-out states like Florida, Georgia, Texas, North Carolina, and Wisconsin with new national health insurance coverage.
Some of the cost of these health care expansions could be covered using the money saved by letting the government negotiate down the price it pays for prescription drugs, which current law does not allow. Not only would we lower the cost of prescription drugs that many of us pay, we save taxpayer money too.
We need to hold elected officials accountable if they vote to take away our care, or if they vote to enrich the health care industry over the needs of their own constituents. Now is the time for them to choose which side they are on.
Health care activists came out of the shadows to become the heroes we were waiting for. Our work is not yet done until everyone in the United States has the health care they need.