The ACA, My Son, And a Judge in Texas

December 15 was also the day a judge in Texas struck down the Affordable Care Act (ACA). Health care, and passage of the ACA, has and continues to be a major part of the work I do in my day job. But, it’s also been an area of deep passion and concern personally. Before the diabetes diagnosis, the same child had been managing his ADHD and impulsivity disorder. My younger son, also diagnosed with ADHD at a young age, has Asperberger’s syndrome — or what is now called an Autism Spectrum Disorder. Specialists, out of pocket costs, insurance, and medication have been a daily part of our lives since the kids were diagnosed at young ages. We recognize the privilege we have had in getting our kids the health care they need regardless of insurance or other financial obstacles. However, they are not going to stay young forever. Without the benefits of the Affordable Care Act, kids like mine — and everyday Americans — cannot afford to manage chronic illness.

Protections for individuals with pre-existing conditions, provided through the ACA, are critical for millions of Americans living with chronic diseases, including people with type 1 diabetes. Yet the court decision and efforts to repeal the ACA in Congress, threaten these protections by putting quality, affordable health coverage is at risk. Without them, individuals with pre-existing conditions — like the diabetes community — were previously denied insurance coverage, charged higher premiums, and experienced limited benefits.

In my steep learning curve since my son’s diagnosis one week ago, I discovered through the Juvenile Diabetes Research Foundation that 1.25 million Americans are living with type 1 diabetes, a serious and chronic disease. People with type 1 diabetes are dependent on insulin and require affordable access to drugs and devices to survive. Continued access to comprehensive health insurance at rates similar to those without pre-existing conditions is essential.

And the costs, as we’ve also learned, are real. Insulin costs have skyrocketed. As a result, individuals with T1D incur almost three times the level of medical expenses compared to those who do not have diabetes. Without comprehensive and affordable insurance, people will not be able to afford this life-sustaining drug, leading to hospitalizations that can cost $17,000 or more, and high rates of costly complications such as kidney failure, heart attacks, and strokes.

While the judge in Texas and Republicans in the 115th Congress play with people’s lives, it’s time for the new Congress to recognize what we know: a majority of Americans support the ACA, including ensuring coverage for pre-existing conditions. And, a majority of lawmakers on both sides of the aisle have supported ensuring protections for those with pre-existing conditions. Making it easier for people with chronic conditions, like diabetes, to manage their disease is better for the economy as it keeps them healthy and productive, and reduces overall health care costs. Quality, affordable coveragehelps individuals with chronic disease avoid costly emergency room visits, inpatient admissions, and other complications.

The midterm elections made it clear that no one wants to go back to a pre-ACA world when 48 million Americans were uninsured and insurers could deny coverage or drop/charge more to those with pre-existing conditions. People’s lives depend on high quality, affordable, and comprehensive health care coverage — since 2010 we’ve learned just how much the opportunity to access health care with consumer protections, for many for the first time, means for millions.

At 16 years old, instead of learning to drive and hanging out with his friends, my son is learning to count carbohydrates, test his blood sugar, and determine insulin amounts to stay alive. Many are diagnosed at a much younger age, and still others at older ages. No matter when illness strikes, no one should have to fear that health care coverage is unavailable or unaffordable. Congress must protect the health care needs of all. If not for my children, then for the millions of Americans suffering — or not yet diagnosed — with health conditions.