- Jamie Davis Smithmother of four, civil rights attorney and member of Little Lobbyists and Health Care Voter.
Just a week after President Trump’s Justice Department supported a federal court ruling to wipe out the Affordable Care Act, Trump changed course in a series of tweets Monday and said he is willing to wait until after the 2020 presidential election for Congress to vote on a new healthcare plan. Trump has vowed to replace the ACA so that the Republican Party will be known as “the party of healthcare.” We speak with Jamie Davis Smith, a mother of four, civil rights attorney and member of Little Lobbyists and Health Care Voter. Her daughter Claire has multiple severe disabilities. In a recent op-ed for The Washington Post, Davis Smith wrote, “If Trump ends Obamacare, keeping my daughter alive will wipe me out.”
AMY GOODMAN: This is Democracy Now! I’m Amy Goodman, with Juan González.
JUAN GONZÁLEZ: Well, it was just last week that President Trump’s Justice Department supported a federal court ruling to wipe out the Affordable Care Act, and Trump vowed to replace it so that the Republican Party will be known as “the party of healthcare.”
PRESIDENT DONALD TRUMP: Obamacare is a disaster. Right now it’s losing in court, right now in the Texas court, as you know, probably ends up in the Supreme Court. But we’re plan—we’re doing something that is going to be much less expensive than Obamacare, for the people. I’m not saying government, I’m saying for the people. And we’re going to have pre-existing conditions, and we’ll have a much lower deductible. So—and I’ve been saying it: The Republicans are going to end up being the party of healthcare. Thank you very much.
JUAN GONZÁLEZ: That was President Trump speaking last week, after the Justice Department argued that the ACA should be fully overturned, siding with a Texas judge who declared President Barack Obama’s signature health law unconstitutional last December. But that was last week. Now we’re in this week.
AMY GOODMAN: And in a series of tweets Monday night, Trump changed course and said he’s willing to wait until after the 2020 presidential election for Congress to vote on a new healthcare plan. Trump wrote, “Everybody agrees that ObamaCare doesn’t work. Premiums & deductibles are far too high–Really bad HealthCare! Even the Dems want to replace it, but with Medicare for all, which would cause 180 million Americans to lose their beloved private health insurance. The Republicans are developing a really great HealthCare Plan with far lower premiums (cost) & deductibles than ObamaCare,” unquote.
This comes after Trump’s first push to repeal and replace the Affordable Care Act failed in the Repbulican-controlled Senate in 2017. Many Republican lawmakers said the move hurt incumbents and candidates in last last November’s election. Democratic Speaker of the House Nancy Pelosi has a vote planned this week to condemn the administration’s decision not to defend the ACA in court.
For more, we’re joined in Washington, D.C., by Jamie Davis Smith, whose daughter Claire has multiple severe disabilities. She’s a mother of four, civil rights attorney, member of Little Lobbyists and Health Care Voter, her recent op-ed for The Washington Post headlined “If Trump ends Obamacare, keeping my daughter alive will wipe me out.”
Claire, thanks so much for joining us—Jamie Davis Smith, thanks so much for joining us. Can you talk about your daughter and what it would mean if the ACA were overturned?
JAMIE DAVIS SMITH: Thanks, Amy. Yeah, my daughter Claire is 12, which means she was born in 2006, before the ACA was passed. When she was born, we thought she was perfect, but she was born with multiple and severe disabilities. She has epilepsy, asthma, autism and a very long list of medical conditions that affect nearly every part of her body, from top to bottom. But she’s a very sweet child. She’s almost a teenager. She loves swimming and ice cream and spending time with her family.
And we are really terrified that just as she’s about to become a teenager and embark on this whole new part of her life, that we are going to be thrust back to the time before the ACA, when we stayed up at night worrying: What if she meets the lifetime cap on her benefits? What if she meets the annual cap on her benefits? What if her pre-existing conditions, the conditions she was born with, are no longer covered by insurance? What will we do then?
It was terrifying when she was born, before the ACA took effect, to know that there could be a time where even though we live in a country, in a city with access to state-of-the-art medical care, that can not just help her not survive, but thrive, she might not be able to access to that care, just because health insurance wouldn’t cover it, and because even if we spent every penny we had on her care, there would reach a time eventually where we would be completely wiped out and couldn’t afford to pay for her care anymore. And we don’t want to go back to that time. It was a horrible time to have a pre-existing condition in this country. And it is truly bizarre to me that we are even contemplating going back to that kind of system.
JUAN GONZÁLEZ: Well, I wanted to ask you—you mentioned the cap. Most families that have not been faced with catastrophic health crises are not aware that there are actually lifetime caps. Could you talk about what they are?
JAMIE DAVIS SMITH: Sure. So, I’ll talk about my friend Kim. Her son Isaac actually lost his health insurance when he was just 15 months old, because he reached his $2 million cap on care when he was just a baby. And luckily, the Affordable Care Act was signed into law just a few days after that, but he’s 10 now and stands to lose his insurance again. He probably met that $2 million cost for his care multiple times over since then.
My friend Elena Hung, who is actually the co-founder of Little Lobbyists, her daughter is Xiomara spent time in the NICU. That stay cost $3 million, just for the first few weeks of her daughter’s life.
So, the caps did vary from plan to plan before the ACA. They were generally in the range of a couple to a few million dollars. But if you do have a catastrophic illness or a child who’s born premature or with disabilities, there’s a very real chance that they would reach that limit. No matter how high it may seem to people who are generally healthy, people did reach that limit within months, you know, 15 months, of their lives. And we can’t go back to that. The caps are not high enough—or, were not high enough to provide for a lifetime of care.
AMY GOODMAN: What would the ACA repeal mean for you? What would it mean for Claire?
JAMIE DAVIS SMITH: Well, it means my husband and I would lose the very real peace of mind we have, knowing that although Claire faces a lot of challenges in her life and we face a lot of uncertainty, none of that right now is due to fear that she won’t have access to health insurance or the healthcare she needs. We go back to a time wondering: What happens if Claire does reach her lifetime cap? What happens if there’s a change in the law and her pre-existing conditions aren’t covered, that she can’t get access to the medication that keeps her from having seizures, the asthma medication that helps her breathe? What happens then?
Before the ACA, my husband and I contemplated selling all of our assets. We have a home and a car. I live a very middle-class lifestyle. There’s a very real possibility that if the ACA were repealed, we would have to give all of that up just so that my daughter could have access to Medicaid, which would actually cost the government a lot more than the ACA does.
Another possibility we contemplated, which some families have done, is getting actually divorced, so that I could have custody of Claire as a single, unemployed mother, and she could get access to healthcare that way. Another option, which is really unthinkable to us, would be that Claire could be sent to live in an institution, because she could qualify for Medicaid if she didn’t live with us.
But we believe very strongly that families belong together. We believe that families who love each other shouldn’t have to get divorced just to get access to healthcare. We believe that all families deserve the stability of having a home and a decent income to put food on the table and that we shouldn’t have to give that up just to have access to healthcare, just to keep our daughter alive. But that’s the kind of situation we’re facing if the ACA is repealed.
JUAN GONZÁLEZ: And, Jamie Davis Smith, you’ve argued, and your group, Little Lobbyists, have argued, that the Obamacare, or the ACA, actually saves money. Could you talk about that?
JAMIE DAVIS SMITH: Yeah. There have been studies showing that although the ACA does have costs and is expensive, that the ACA has actually saved $2.3 trillion—trillion—in the system overall. And if the ACA is wiped out, all of those gains stand to be wiped out. We also now have access to long-term supports and services that help us keep our children at home. Claire has a nurse at home who helps keep her healthy, who helps keep her out of the hospital. And under some proposals, that would all be gone, even though studies show, again, that it’s actually much less expensive to provide these kinds of supports that keep children at home rather than providing them in a hospital, which, again, tears families apart and is completely unthinkable to families like mine.
AMY GOODMAN: Your thoughts on the Trump flip of the last 24 hours, saying he won’t push to replace Obamacare during his term, but right after, when the Republicans take back the House? What does this mean for your family as you follow policy, the life of your daughter at stake, from presidential tweet to tweet?
JAMIE DAVIS SMITH: Well, we need certainty. We can’t provide for Claire’s care on a day-by-day or tweet-by-tweet basis. She has a very complex—she has very complex medical needs that require coordination between specialists and a lot of support. And it’s very difficult for families like mine to try to plan for the future in ways that keep our children healthy and allow them to thrive, if we don’t know what’s coming next.
In the immediate future, it’s very important to us that we keep the protections of the ACA, that we have now, in place. And looking forward, I believe very strongly that healthcare is a human right, that everybody deserves access to high-quality, affordable healthcare. And we need to take the time to think about what that kind of plan would look like, whether it’s a universal coverage plan or something else. But we need certainty, and we can’t subject our—we can’t subject our children to the whims of presidential tweets.
AMY GOODMAN: Well, Jamie Davis Smith, we thank you for being with us, mother of four, civil rights attorney, member of Little Lobbyists and Health Care Voter. We’ll link to your piece in The Washington Post, “If Trump ends Obamacare, keeping my daughter alive will wipe me out.” And as you talk about universal healthcare, we’ll go to talk about Medicare for all, in 30 seconds.