Six Months Later: The ACA, My Son, And a Judge in Texas

I’m not one for numbers. Math was never my thing in school, and I avoided it then just as my younger son seems to do now. Yet marking the time since my older son’s type one diabetes (T1D) diagnosis six months ago comes naturally. In fact, each day is punctuated with So. Much. Math. Throughout endless counting, dividing, calculating, tallying, timing, and dosing, the hubs and I agree that it feels more like six years than six months.

Just as my son was diagnosed with T1D in December 2018, US District Court Judge Reed O’Connor issued a dangerous ruling that would strike down the entire Affordable Care Act (ACA), including provisions that protect people with pre-existing conditions. On July 9, 2019, the Fifth Circuit Court of Appeals will hear oral arguments in the case (now on appeal) — Texas v. United States — in which access to health care and financial security for millions of Americans is at risk.

As the Director of Government Relations and Advocacy at the National Council of Jewish Women (NCJW), I’ve worked with our network across the country since the very beginning of the ACA’s legislative journey to enact it, and since its enactment, to ensure its implementation and protection. It was — and is — a landmark law, changing health care for millions. In multiple votes over many years, Congress acted to keep the ACA intact. And, in the 2018 midterm elections, the issue of health care was front and center as people across the country went to the ballot box and voted for candidates who wanted to preserve and improve the ACA, not dismantle it.

By now, many of us are aware that repealing the ACA would allow insurance companies to:

· deny coverage to the 133 million people, including 17 million children, with pre-existing conditions like T1D or charge them more;

· prevent 2.3 million individuals from staying on their parents’ coverage until age 26; and

· refuse to cover the costs of prescription drugs.

My son, at age 17, could use all the time he can get on our insurance. The number of prescriptions for his ADHD and impulsivity issues coupled with lifesaving insulin (which should be free — a rant I’ll save for a future blog) and all of the T1D accoutrements are staggering. I can’t imagine him being able to comfortably afford any of it now, let alone by age 26.

Let me be clear: T1D is an unpreventable, incurable, and expensive disease. Approximately 1.25 million Americans have it, and without the ACA, all of them would have to worry about being charged more or kicked off their insurance. Aside from the large prescription drug costs associated with diabetes care, diabetes is a device and supply intensive disease. Beyond prescription drugs, the cost of diabetes supplies is estimated to be between $350 and $900 per month, with the cost of an insulin pump adding another $2,500 per year. If premiums rise, many patients won’t be able to afford pumps and blood glucose monitors, important equipment for blood sugar control to thwart T1D complications including blindness, kidney failure, heart disease, stroke, and loss of limbs.

But, this is not just about my son and others with T1D. Overturning the ACA would impact millions by:

· eliminating tax credits used by most people on the marketplaces to pay for coverage;

· ending Medicaid expansion, upon which many non-elderly adults with disabilities depend on for care; and

· allowing insurance companies to charge older people significantly more than younger people.

Of course, repealing the ACA would also mean returning to the practice of insurance companies charging women more than men, eliminating contraception coverage at no-cost, and denying maternity care. This, coupled with the rollback of abortion rights across the country, would prove devastating to women in particular. And, yet the person at the helm of the US Department of Health and Human Services — Secretary Alex Azar — charged with improving the health and well-being of the American people, is a staunch opponent of both the ACA and a woman’s right to make her own health care decisions.

Texas v. United States is overwhelmingly opposed by the American people, including large numbers of Moderates and Republicans. In fact, polling done by the Kaiser Family Foundation and Public Policy Polling show voters reject the Trump administration’s health care lawsuit. Further, the majority of the public say they do not want to see the Supreme Court overturn either the pre-existing condition protections (68 percent) or the entire health care law (54 percent); and most — including about half of Republicans — also say it is “very important” to them that the ACA provisions protecting people with pre-existing conditions remain law even after hearing that these protections may have led to increased insurance costs for some healthy people.

The Trump administration, which has refused to even defend the ACA in court, has waged a relentless war on health care from day one. From selling junk insurance plans to starving the ACA marketplace enrollment effort to Medicare and Medicaid cuts in the president’s budget. It is painfully evident this is not an administration that cares about my son or any of the more than 20 million Americans who #gotcovered thanks to the ACA. But what happens if the Fifth Circuit sides with the District Court ruling? If the ACA is repealed, what is the plan of action? Without access to affordable, quality, and comprehensive health care, chaos will undoubtedly ensue.

At NCJW, we know that courts matter to everyone and that a single ruling can change the course of history. Thanks to the Senate’s frenzied pace of confirming judges hostile to the ACA, the administration is banking on using the courts to achieve what they can’t legislatively — in this case, dismantling the ACA. In the words of Alliance for Justice President Nan Aron, “The future of health care for millions of people is now at the mercy of a court system that is increasingly stacked against it, and that is a tragedy waiting to happen.”

My son, who will be 18 next year and eligible to vote in 2020, will be watching to see what comes out of the Fifth Circuit Court of Appeals — along with millions of health care voters across the country.