A week after election day, the U.S. Supreme Court will hear California v. Texas, a case that could have significant implications for people with rare diseases.

The case may decide whether the Affordable Care Act, the signature legislation of the Obama administration often referred to as Obamacare, will remain in place more than ten years after its passage.

Past efforts to overturn the legislation failed in the courts. In 2012, the U.S. Supreme Court ruled the individual mandate was constitutional under Congress’s taxing authority. The individual mandate is a part of the ACA that requires virtually everyone to have health insurance or face a penalty for not complying. Republican legislators and the Trump administration also failed to kill the legislation despite their long threats/promises (depending on your politics) to repeal the legislation because of their inability to craft an alternative. Now, though, the law may fall.

With the death of Justice Ruth Bader Ginsburg last week, the chance has increased for the court to overturn the legislation. Much of the focus has been on the Trump administration’s move to name a replacement for Ginsburg and the political fight over whether the Senate should hold a hearing and vote on a nominee with the presidential election set for November 3.

If a new Trump appointed justice is seated in time for the case, there’s a reason to believe the court may throw out the individual mandate and even the entire law. But even if the court ends up divided in a 4 to 4 vote, the lower court’s ruling will stand and it will be up to the trial court to determine if the individual mandate can be severed from the ACA and the rest of the law can stand without it.

What set the stage for the current challenge was the package of tax cuts Congress passed in 2017 in legislation known as the Tax Cuts and Jobs Act. Among other things, the legislation established that the penalty for individuals failing to comply with ACA’s individual mandate would be nothing.

In 2018, the state of Texas and 19 other states, along with two individuals, argued that setting the penalty for failing to comply with the individual mandate to nothing meant it could no longer be considered a tax and therefore made the mandate unconstitutional. But they didn’t stop there. 

The plaintiffs go on to argue the mandate is essential to the Affordable Care Act and if it is struck down, the entire law becomes invalid. The Fifth Circuit Court of Appeals in Texas agreed that the mandate was unconstitutional and sent the case back to the lower court to determine if the rest of the law could stand without it.

A group of 20 patient organizations, including the National Organization for Rare Disorders, the Muscular Dystrophy Association, and the Hemophilia Federation of America, filed an amicus brief with the court asking the court to keep the ACA in place.

“The costs of treating such serious conditions are often staggering and beyond the financial means of most individuals and families. The central question is not whether individual Americans will incur health care expenses but how those expenses will be financed, and the extent to which patients will forgo treatment if they cannot afford it,” the patient organization said in the amicus brief. “Without the health insurance facilitated by the ACA, access to vital health care services and the quality of health outcomes diminishes, making it more difficult to manage the myriad chronic diseases and conditions that Amici help Americans fight and treat every day. Few Americans have the means to pay for adequate treatment of these diseases without insurance coverage—for most Americans, insurance is a not a luxury, but a prerequisite to obtaining life-saving and life-sustaining treatment.”

They argued that Congress rejected a “repeal-without-replace” scenario and that invalidating the ACA would invalidate Congress’s clear intent to the contrary.

While the outcome of the case is uncertain, among the provisions that would fall should the entire ACA be thrown out is the provision that prevents insurance companies from refusing to cover anyone or charge more because they have a pre-existing condition, an issue of particular concern for people with rare conditions.

At a time when rare disease advocates should be fighting for better and more affordable care, they face the loss of some of the most significant gains in the past ten years. During the next six weeks the battle over a new justice and the presidential election will no doubt elevate the sound and the fury that has become American politics. In the midst of all the noise, it is worth remembering rare disease patients have much at stake.

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