Our Family's $300,000 Question and the Coming Answer from the U.S. Supreme Court
Updated: Nov 12
What do the American Cancer Society, the American Diabetes Association, the American Heart Association (and its division, the American Stroke Association), the Crohn's & Colitis Foundation, the Epilepsy Foundation, the Hemophilia Federation of America, the Leukemia & Lymphoma Society, March of Dimes, the Muscular Distrophy Association, the National Alliance on Mental Illness, the National Coalition for Cancer Survivorship, the National Hemophilia Foundation, the National Multiple Sclerosis Society, the National Organization for Rare Disorders, the National Patient Advocate Foundation, the Kennedy Forum, and (most significantly for my purposes) the Cystic Fibrosis Foundation (CFF) all have in common?
Answer: this all-star roster of mainstream American healthcare organizations all jointly filed an amicus ("friend of the court") brief at the U.S. Supreme Court urging the justices not to strike down the Affordable Care Act (ACA).
Eschewing, mostly, the statutory construction arguments at the legal heart of the appeal, the amicus brief recites in compelling fashion exactly what voiding the ACA would mean to millions of Americans. Among those millions is my cystic fibrosis family; the PwCF (person with CF) we love and especially care about is a healthy and thriving 19-year-old first-year college student and equestrian whose CF care in 2019 -- a fairly routine year, based in experience -- was approximately $300,000. For reference, that's three times my annual salary.
Reading the amicus brief was a humbling experience, if only because it reinforces how small the CF community is in relation to the bigger universe of Americans who have the diseases and conditions relevant to the organizations listed above. There are only about 30,000 people in the U.S. with CF. But, according to the amicus brief, about 1.8 million Americans will have been diagnosed with cancer in 2020, 34.2 million Americans have diabetes, nearly 109 million Americans have cardiovascular disease, 16.4 Americans have chronic obstructive pulmonary disease (COPD), 3.4 million Americans have epilepsy, a million Americans have multiple sclerosis (MS), and 46 percent of adults in the U.S. have a mental illness. Altogether, 60 percent of Americans are living with a chronic disease, according to page 12 of the amicus brief.
No wonder the justices seem poised to affirm the Affordable Care Act. As the amicus brief hauntingly documents, the end of ACA would be devastating to that 60 percent. "These statistics," according to the brief, "confirm the virtual certainty that all Americans will need health care at some point in their lives to preent or combat serious chronic diseases or a myriad of other health conditions." Boy do I know that. Prior to becoming a father in late 2001, I was a health insurer's dream -- a reliable source of (mostly employer-paid) premiums who made few if any claims. Then cystic fibrosis snuck up behind me, tapped me on the shoulder, and said "turn around and follow me." The hospital bills, and the pharmacy bills, likewise followed -- again, happily, mostly covered by employer-provided health insurance.
The data in the amicus brief about healthcare-related financial burdens in the amicus brief is especially haunting for a CF patient. CF may be an "orphan disease," but it's right up there when it comes to the cost of treatment. Disease-modifying treatment for MS patients averages $82,000 a year. For people with diabetes, annual medical expenses average $17,000. For epilepsy the number is $20,000 and for inflammatory bowel disease its $36k.
Burned into my head is the price charged by Vertex pharmaceuticals for a year's worth of its breakthrough CF drug approved a year ago, Trikafta: $312,000. My daughter is among the 10 percent of CF patients who aren't helped by Trikafta and its pharmaceutical cousins (the so-called "modulator" therapies), all really expensive and all exclusively produced by Vertex under patents that have many years left to run. Her breakthrough will come -- the CF Foundation will see to that, as America's most successful and relentlessly mission-focused healthcare charity -- but, when it does, I'll wager the price will make Trikafta look like ibuprophen.
The specific question in California v. Texas has to do with a really stupid decision made by Congress (and the soon-to-be evicted current occupant of the White House) in 2017. That's when the penalty in the ACA for failing to acquire health insurance was reduced to zero. Why is that stupid? Because if you don't require healthy people to buy health insurance, then only sick people will volunteer to acquire coverage and premiums must soar in order to meet the resulting costs. Or something else has to give.
What the justices must now decide is whether this decision to zero out the "no coverage" penalty should have the effect of rendering the entire ACA null and void. The amici -- along with the states of California, Colorado, Connecticut, Delaware, Hawaii, Illinois, Iowa, Massachusetts, Michigan, Minnesota, Nevada, New Jersey, New York, North Carolina, Oregon, Rhode Island, Vermont, Virginia, and Washington (but not, alas, New Hampshire) plus the District of Columbia and Kentucky Governor Andy Beshear -- persuasively argue that the high court should not do what Congress explicitly declined to do in 2017 and a bunch of other times as well: repeal the Affordable Care Act altogether.
The justices will likely go along with that, even though the political and personal preferences of a majority of the learned nine now unmistakably align with those of politicians who have dedicated themselves to ACA repeal. For all of the current controversy about the Court, social scientists have observed that SCOTUS jurisprudence tends to be not radical but, rather, a lagging indicator of majority sentiment among the U.S. population. And, as the amici have cogently demonstrated, the vast majority of Americans would suffer palpably, arguably even horribly, if the Affordable Care Act were voided by fiat.
I'm betting $300,000 on a good outcome.
Above: Baby Rose in December 2001, pre-diagnoses. Below: Baby Rose a few months later, post-diagnosis.
And . . . can't resist . . . here is baby Rose now (or, at least, back in late August) heading off to college.