We Deserve Better: Why I Support the ACA (by Jamie Davis Smith)
Jamie Davis Smith speaks in front of the Supreme Court. [image description: A woman wearing a face mask stands in front of a microphone. Protestors carrying signs supportive of health care stand in a line to her left & right. In the background is the U.S. Supreme Court, bright white marble against a flawless blue sky.]
My daughter Claire is 14 and loves ice cream, being in water, and has spent much of the pandemic snuggled on the couch with her three younger siblings. Claire spent the first few weeks of her life in the Neonatal Intensive Care Unit receiving the best medical care available. There we learned that nearly every part of Claire’s body was formed differently than most. She is missing parts of her brain and her heart is not in the typical place. She has epilepsy, asthma and intellectual disabilities.
Like Amy Coney Barrett’s son Benjamin, who was born with Down Syndrome, Claire was born with pre-existing conditions. But Claire was born in 2006, four years before the Affordable Care Act (ACA) was passed. This meant that every test she had, every procedure, every hospital stay, every doctor’s appointment, every therapy visit, every canister of oxygen was a tick mark against her annual and lifetime caps on care. Every step I took to help Claire stay healthy felt like a step closer to the day she would not be insurable – at any cost – because of the way she was born.
Because Justice Barrett’s son was born after the ACA passed, she never had to worry that her child would suffer (or worse) because his health insurance benefits ran out. And she never experienced the relief that came to parents like me when the ACA passed, and we could tuck our children in at night with peace of mind, knowing that, while they might still face challenges, those challenges would not be a lack of access to health care. Justice Barrett never felt this relief because she never carried the worry that came along with having a disabled child before the ACA became law.
After the ACA was passed, we no longer worried that Claire would lose her health insurance because an insurance bureaucrat decided what her life was worth and that she was too expensive to keep alive. Friends who received pre-natal diagnoses of illness or disability felt confident that after their children were born they would never have to go without health care because of pre-existing conditions, or because they could not afford to pay for the care their children needed.
Yet Justice Barrett is clearly on record as being opposed to the ACA and is poised to be the decisive vote to overturn the law. She takes this position knowing that without the ACA’s mandates millions of Americans, like her son, with pre-existing conditions could lose their insurance and access to health care.
Justice Barrett now has a secure, life-time job with access to some of the best health benefits offered in the country. Few other Americans are so lucky. While I certainly believe that every Supreme Court Justice and their family should have access to quality healthcare, I do not believe that this right should be guaranteed only to the wealthy and the powerful. Neither does Joe Biden, whom Americans just elected with a record number of votes – many of those votes cast before Justice Barrett was confirmed. I, too, believe that everyone deserves the right to access healthcare, even if they were born with pre-existing conditions.
It is stunning that after making so much progress toward achieving this goal we are now on the cusp of limiting access to health care, rather than taking steps to expand Medicaid and other programs that ensure that everyone has the care they need. I believe the voice of the American people should be heard. Americans just voted in overwhelming numbers to support these ideals: compassion and that every life has value.
After four years, no viable alternative to the ACA has been proposed. The ACA must stand!
Claire deserves better. We all do.
[Adapted from Jamie’s remarks delivered on the steps of the U.S. Supreme Court during oral arguments on the future of the ACA, November 10, 2020.]
Jamie Davis Smith is a mother of four who lives in Washington, DC. She is an attorney, writer, and disability rights advocate. Jamie is a member of Little Lobbyists, and her articles about her family's experiences with disability and advocacy are frequently featured in national publications.