Claire was born in 2006 with multiple and severe disabilities as a result of a chromosomal duplication present from conception. She has profound intellectual disabilities and cannot speak, feed herself or use the toilet on her own. She requires assistance with every aspect of her life, from getting dressed in the morning to brushing her teeth at night. She has a complex medical profile including autism, epilepsy and asthma.
Learning your child will live with additional challenges and pain is not easy, but the prospect of having a medically complex child before the Affordable Care Act was passed in 2010 was terrifying. When Claire was born, I worried about her health and her future. I knew some of what life had in store for her was beyond my control, no matter how much support I gave her. I also knew providing her with the best care was expensive — and, because of the lifetime limits insurance companies were allowed to impose before the ACA was passed, there was a very real possibility that Claire’s insurance benefits would run out while she was still a child. I also knew my family could be held hostage by Claire’s multiple preexisting conditions, ones with which she was born, because any change in family employment or health insurance could mean that Claire could lose coverage for her most costly and hard-to-treat needs.
Claire was a “million-dollar baby,” having started her life in the neonatal intensive care unit, which was followed by heart surgery when she was 6 months old, weekly visits with multiple specialists and therapists, followed by even more surgeries, more hospital stays, and more treatments. As her mother, I of course thought she was worth every penny. But I was also aware that every procedure, every prescription, every doctor’s visit pushed her a little closer to reaching the dollar amount her insurance company had placed on her life the moment she was born. I lived with this fear for years.
If that had happened, we would have had to sell all our assets — including house and car — to get Claire on Medicaid. We even wondered whether we would have to qualify for Medicaid by getting divorced — so that she would be in the custody of a single, unemployed mother.
Then came 2010. Claire turned 4 and President Barack Obama signed the ACA into law. With one stroke of the pen, the lifetime cap on health care that I feared Claire was perilously close to meeting was eliminated. Claire’s preexisting conditions became just a list of medical and developmental concerns rather than a list of conditions for which Claire was in danger of losing coverage if my husband ever lost his job.
After the ACA went into effect, for the first time since Claire had been born, I could sleep well at night knowing that although Claire would continue to face challenges, none of them would arise because we could not afford to provide her with the best care available. I did not have to worry that my daughter’s preexisting conditions would force my family into bankruptcy because Claire was not insurable, at any cost, on the private market. I did not have to worry that even if we spent everything we had on Claire’s care that we would still reach the point, eventually, where we could no longer afford to provide her with the care she needs to survive and thrive. Although our lives were still full of uncertainty, for the first time, we were certain that Claire would always have health insurance.
Since the passage of the ACA, Claire has continued to thrive. She is followed closely by a carefully selected team of doctors. She receives speech, occupational and physical therapy several times a week to help her reach her fullest potential. She has the medical equipment she needs, like a wheelchair and a hearing aid, that allows her to be fully integrated into family life and our community. All of this is possible because of the ACA.
It is not an exaggeration to say that a repeal of the ACA would be a death sentence for many. Claire is not unique in this regard. Many of my friends from Little Lobbyists, with whom I advocate for kids with complex medical needs and disabilities, are at risk. Tasha Nelson’s son Jack, who has cystic fibrosis, could lose access to the $9,000 worth of medications he needs every month to help him breathe and eat. Angela Carpenter Gildner’s son Graham could lose access to the lifesaving treatment for depression and autism that keeps him from having suicidal thoughts. Because Graham’s father is self-employed and his mother is a student, he would probably be uninsurable without access to insurance plans available under the ACA. Kimberly Gould Crawley’s son Isaac, who lost insurance when he was just 15 months old and reached his $2 million lifetime cap as a baby, could lose his insurance again.
If the ACA is struck down, 130 million Americans with preexisting conditions stand to lose protections for conditions including from cancer, heart disease and arthritis. If the Justice Department gets its way and the ACA is found unconstitutional, 20 million Americans stand to lose their insurance. Getting rid of the ACA also will be expensive. Since the ACA was passed, health-care costs have been reduced by $2.3 trillion, more than offsetting the costs of providing health care under the ACA. Yes, Claire’s treatment is expensive — but overall, the system has been able to cut spending. These savings stand to be wiped out if the ACA is eliminated.
No one will be immune from the impact of this decision. We all stand to become sick or disabled at some point in our lives. We are all just one phone call away from hearing that our child has been in an accident, or that test results for a serious illness came back positive.
In 2018, voters loudly rejected a repeal of the ACA. Health care was the No. 1 issue in the midterm elections, and Democrats made the biggest gains in the House since Watergate. Long-term Republican members of Congress such as Rep. Barbara Comstock (Va.) were voted out, unseated by candidates including Democrat Jennifer Wexton who campaigned on protecting health care.
With Democrats now firmly in control of the House, President Trump knows he cannot repeal the ACA through Congress — the appropriate channel, where the voices of Americans have a say — and is instead turning to the courts to overrule the clear mandate voters gave in the midterm elections to keep our health-care protections in place. We cannot let him get away with this.
My daughter Claire deserves access to high-quality health care. So do Jack, Graham and Isaac. So does every American.