On Friday morning outside an office building on Waters Avenue in Tampa, a coalition of groups held an event dubbed "Nation of Sickos," which included a stop for the "Save My Care" bus tour. Those who gathered were patients and loved ones of people for whom the ACA has had a profound and tangible impact, as well as members of the medical community who don't want to see their patients lose coverage.
With Republican majorities in the House and Senate and a Republican president who spent much of his campaign railing against the policy, the ACA's days are seriously numbered.
For Heather St. Amand, a political organizer and mother of a 13-year-old trans girl, preserving the system as it is could be a matter of life and death for her daughter, who receives quarterly injections of lupron blockers, which inhibit puberty.
"For my daughter, it's lifesaving treatment because to go through puberty in a body that you don't identify with, is everyday anguish,” St. Amand said, citing the high rate of self-harm and suicide among trans and gender nonconforming teens. “I can't allow my daughter to be one of those statistics. I support her as her mother and I make sure she has the tools that she needs to discover her identity and who she is with the help of our doctors and her psychiatrist.”
That treatment is covered through the Children's Health Insurance Program, which is an extension of Medicaid that helps cover millions of children and teens. St. Amand said she fears that Republicans will abolish the program and turn Medicaid, the program that provides health coverage to low-income Americans, into a block grant program the states would dole out on a per capita basis — i.e., the same amount for everyone — instead of patient needs.
“We have fought so hard to get to where we're at. While the ACA is not perfect by any means, to repeal and replace it without having proper provisions or to try and take from the Medicaid and the CHIPS expansion in order to fund that would be catastrophic,” she said.
Leading up to the passage of the ACA in 2010, Republicans were quick and successful in their efforts to, however misleadingly, brand the ACA as a government takeover of healthcare and an expensive blunder they promised to repeal if given the chance. Republican-led state legislatures did everything they could to block state-level administration of the law — and were aided by a Supreme Court decision that allowed states to decide whether or not to accept billions in federal Medicaid dollars in doing so.
So while the requirement that everyone purchase a plan or pay a fine stood, some people in states like Florida, which repeatedly rejected Medicaid expansion dollars, fell into a loophole in which they made too much money to qualify for Medicaid and too little to receive a subsidy to help them pay for insurance.
Meanwhile, healthcare costs continued to go up as they had prior to the bill's passage.
So instead of sweeping, pro-consumer reforms that require insurers to let people stay in parents' plans until they turn 26, focus on prevention and early detection via gratis annual checkups and never deny coverage because of a preexisting condition, what the general public saw was a large blunder of a policy that was costing everyone money.
On the campaign trail, then-candidate Trump used that sentiment to cast Democrats as overbearing, and despite saying he wants to keep aspects of the law, he still calls it "a disaster" on the regular — and his supporters, many of whom did not know the Affordable Care act and Obamacare are the same thing until recently, decried the law just as vehemently.
The misperceptions need to stop before it's to late, said Mona Mangat, a doctor of allergy immunology with a private practice who was there Friday to speak to the law's merits. She estimated that about a quarter of her patients were newly insured thanks to the ACA, including a patient she treated for free for a period before the law was ratified.
“And now, we have to have this conversation again: What's going to happen? What's going to happen if the ACA is repealed?” she said.
It's easy to see how we got here, Mangat said; there's a false correlation with the advent of the policy and exploding health care costs that were going up anyway. Plus, the law's supporters didn't effectively communicate what the ACA really does. Thus, millions of Americans didn't see a plan that allowed them to buy insurance despite preexisting conditions. They saw the government telling them what to do.
“It's a messaging failure on the part of those of us that support the Affordable Care Act," she said, "I guess we weren't able to fully explain and connect with people to help them understand how it's made their lives better.”
Mangat went on to explain the need for the individual mandate—the much maligned telling-people-what-to-do part—by noting that health insurance works only because everyone buys into it. And the more people buy into it, the better off everyone else is.
“I think the American way is 'nobody tells me what to do,' Mangat said. "But if you have an insurance-based system, then you'd have to understand risk. And risk pools. And you have to understand that if risk is shared, then cost goes down. And if only sick people buy health insurance, then it's going to be very expensive for those people. And so you have to think a little bit further. You can't just say 'don't tell me what to do, I don't wanna buy health insurance.' It is a difficult concept, but if we are going to continue to be in a state where we have insurance-based health [coverage], then this is how it has to be. Everyone has to have health insurance.”
This article appears in Mar 2-9, 2017.