The Affordable Care Act faces a new legal challenge after a federal judge in Texas ruled the law unconstitutional on Friday. The decision risks throwing the nation’s health care system into turmoil should it be upheld on appeal. But little will be different in the meantime.

“Nothing changes for now,” says Julie Rovner, chief Washington correspondent of Kaiser Health News.

“If you need to sign up for health insurance you should,” Rovner tells NPR’s Michel Martin. “If you’re in one of the several states where it’s extended where you can sign up through January, you have time to do that too.”

Below are some questions and answers about the ACA.

1. What was the Texas ruling?

U.S. District Judge Reed O’Connor ruled that the Affordable Care Act was not constitutional. O’Connor made his decision after 18 Republican state attorneys general and two GOP governors brought their case, Rovner reports. They claimed that the Supreme Court upheld the ACA in 2012 because it included an individual mandate — or a tax penalty for Americans who did not buy health insurance. After Congress repealed the individual mandate in 2017, O’Connor said the rest of the law fell apart.

2. Who might this ruling affect?

The Affordable Care Act runs for more than 1,000 pages and includes many provisions — the exchanges for individuals that are frequently political footballs — and a long list of other measures and protections designed to expand insurance coverage.

NPR’s Alison Kodjak reports that the ACA expanded Medicaid, which has allowed more than 10 million people to get coverage in states that chose to expand the program. The law also protects people with pre-existing conditions and allows people up to age 26 to be covered under their parents’ insurance; requires calorie counts at restaurants and gives protections to lactating mothers. The ACA also secured more money for Native American health care and made significant changes to allow for generic drugs and to provide funding for Medicare.

Rovner says people should act as if the ACA is still in place, but the ruling opens a possibility for “an enormous disruption.”

“It would really plunge the nation’s health care system into chaos,” Rovner says. “The federal government wouldn’t be able to pay for Medicare because all the Medicare payments have been structured because of the Affordable Care Act.”

3. What next?

Judge O’Connor did not rule the law has to be enjoined immediately. Saturday was the last day of open enrollment for the ACA in most states. NPR’s Kodjak reports people can still enroll in health plans in states with extended deadlines. She says even the newest ACA insurance policies will go into effect until more legal action plays out in courts. The federal site for insurance, Healthcare.gov, is running a banner that reads, “Court’s decision does not affect 2019 enrollment coverage.”

NPR’s Kodjak says the state of California has already said it will appeal the ruling. Other states will likely join California in the fight to preserve the law, Kodjak reports. Rovner says the case will probably reach the Supreme Court, though lower courts may reject O’Conner’s ruling first.

4. What are the political stakes in this decision?

The political stakes are great. Voters saw health care as an important issue in November’s midterm elections. Kodjak notes Congress voted multiple times in 2017 to repeal the ACA but did not succeed.

“Lots of Republicans were running ads during the midterms saying they were the ones who were going to protect people’s health care, and specifically protect people with pre-existing conditions,” Kodjak says.

The challenge to the ACA brought by Republican attorneys general is aimed at eliminating protections for pre-existing conditions, Kodjak says.

“So now you have Republicans trying to play both sides, which is going to be difficult,” she says.

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All over the country, specialized teams of doctors are giving hope to families who are desperately searching for a diagnosis.

The medical sleuths, scattered across 12 clinics nationwide, form the Undiagnosed Disease Network. Since the program began in 2014, they’ve identified 31 previously unknown syndromes and they’ve cracked more than a third of their cases, according to a recent paper in the New England Journal of Medicine.

“It was like Sherlock Holmes,” says Euan Ashley, a professor of medicine at Stanford University.” Patients would come with mystery diseases and we would try to solve them.”

Although rare diseases are individually very uncommon, collectively they are surprisingly pervasive. In fact, if grouped together into a single category, they afflict between 25 to 30 million Americans.

For people coping with mystery conditions, finally getting a diagnosis can be life-saving or life-changing. Take the perplexing case of the two Miller boys from Marin County.

A Four-Year Diagnostic Odyssey

Five-year-old Chase and 7-year-old Carson have alert minds and radiant smiles but very uncooperative bodies. The blond, blue-eyed brothers are not able to sit, stand, speak, or feed themselves. They’ve spent their lives in wheelchairs.

Even though they attend a mainstream elementary school and are cognitively functioning on par with their peers, they are both still in diapers. The boys require constant care at home and attentive individual aides in the classroom.

When Carson was about a year old, he was misdiagnosed with cerebral palsy.

Courtesy of Andrew Ross-Perry

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Courtesy of Andrew Ross-Perry

The boy’s parents, Nikki and Danny Miller, first noticed a problem seven years ago when their first son wasn’t reaching typical milestones like rolling over or crawling. Instead, they witnessed spastic movements and tiny hands repeatedly balling into fists. Babbling never turned into words.

When Carson was about a year old, he was misdiagnosed with cerebral palsy. Then when the same developmental delays emerged in the Millers’ second-born, the parents started asking more questions, which led to a four-year diagnostic odyssey with countless inconclusive lab tests. One after another, specialists shrugged their shoulders.

“It’s really tough because as a parent you blame yourself,” says Danny. “What did I do wrong? Is there something wrong with my genes?”

Cracking the Case

Finally, two years ago Danny applied to the clinic at the Stanford Center for Undiagnosed Diseases. After reviewing the boys’ medical history, researchers ordered full genome sequencing for all four family members. Until recently this type of extensive testing was prohibitively expensive.

“We’re rapidly moving to the point where it makes more sense to go straight to the genome rather than measuring one gene, then another, then another,” says Ashley as he pulls out his laptop to point out the clue within the family’s genetics.

The screen is divided into several rows and columns with long strings of letters that represent the human DNA code. Ashley points to a section in the MECR gene, which, when disrupted, alters the part of the brain that controls movement.

“You can see in the colored section the same gene was hit by by two variants one from mom and one from dad,” he says. There is an incorrect letter in the boys’ genetic code. “One letter of 6 billion can cause these incredibly devastating diseases,” Ashley says.

Chase Miller plays at the park with his mom and older brother.

Courtesy of Andrew Ross-Perry

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Courtesy of Andrew Ross-Perry

Neither of the boys’ two copies of the gene works properly, which is why Carson and Chase have a brain disease called MEPAN syndrome. Only 13 people in the world are currently known to have it, and there is only one published scientific paper on it, says Ashley.

“Currently, there is no treatment for MEPAN, but Danny and Nikki are hoping a heavy cocktail of vitamins and supplements will slow down the disease from progressing and further limiting the boy’s ability to move. The parents also take the boys to physical, occupational, and speech therapy to strengthen their muscles and teach them life skills. The boys communicate with computers attached to their wheelchairs.

Discovering what was wrong was only a single step on the family’s journey, though a crucial one. A diagnosis is key to refining treatment and potentially attracting more scientific interest, which may someday lead to a cure.

Father Danny Miller’s voice cracks as he contemplates the road ahead.

“Recently at school Carson built a sentence that said, ‘I hate my wheelchair,’ ” recalls Danny. “Because I know that he wants to be up running around, playing tag, and hide and seek with the other kids. That may not be the way things work out. But I’m going to do everything in my power to try and make sure that does happen.”

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In 2009, Steve Burrows’ mom, Judie, went in for hip replacement surgery. She came out with brain damage and mobility issues after a weeks-long coma that would change her and her family’s life.

In the new HBO documentary Bleed Out — Burrows, a filmmaker and comedian, tracks his 10-year odyssey to find out what happened to his mother and who is to blame. It’s a deep dark dive into the heart of America’s health care system.

What happened to Judie is complicated, but it essentially began with massive blood loss.

“In the end, that’s really how this whole thing started,” Burrows says in an interview with NPR’s Lulu Garcia-Navarro. “She lost over half the blood in her body.”

After her surgery, she was put into recovery and left alone with that’s called an electronic intensive care unit, or eICU.

With a series of monitoring tools that usually include microphones, video cameras and alarms, eICUs are meant to provide the 24-hour monitoring that many patients require after a major medical emergency.

“This [eICU] didn’t notice my mom was in a coma for at least a day and a half and I wanted to talk to the ICU doctor who was there that night,” Burrows says. “We were told there was no doctor there. I said ‘Well that’s insane, what do you mean?’ “

He says there were doctors monitoring the cameras out by the airport in Milwaukee and they were supposed to be the safety net for his mother.

Burrows says that when he asked whether the camera was on, the head of the ICU told him it wasn’t because of patient privacy issues.

As Burrows dug into his mother’s case and the failure of the eICU to recognize her coma, he came across a staggering statistic. According to a study by researchers at Johns Hopkins University, the third leading cause of death in the United States is medical errors.

And those errors, Burrows says, can leave patients one step away from financial ruin.

“That’s the hard lesson we learned,” Burrows says. “My mom, certainly. She was a single mom, she raised my sister and I. She did everything right. She was set. And this happened and two and half years later, she’s broke. She’s on Medicaid … and now we, all the American taxpayers, are paying for her.”

Burrows says that before her surgery, Judie was a vibrant, independent and adventurous woman. These days, her health care has become increasingly more complicated, and in the past two months, she has started long-term hospice care.

“She is very compromised,” Burrows says. “She lost her speech several years ago and that was really the thing that really hurt her the most because she was so articulate and so full of life. I know that the loss of her speech is really the thing that is really killing her the most.”

Throughout the 10 years that Burrows documented his mother’s struggles, he recorded many conversations — both openly and secretly. One of those conversations was with the doctor who conducted his mom’s hip replacement surgery. At the time, the doctor didn’t know he was being recorded.

Steve: If you were in my shoes, right now, what would be …

Doctor: I’d like an accounting, just like you, for why in the hell no doctor was there. Their intensive care unit, where this problem occurred, we still don’t know what happened. We don’t have accountability.

Steve: I mean, do you think they’ll ever tell the truth?

Doctor: No. I don’t.

Up until this point, Burrows had been asking basic questions to the doctors and caregivers involved in his mom’s situation and their stories were always changing, he says. When he finally heard what he thought was the truth by the doctor, Burrows says it was shocking.

He started filming his mother’s pain and suffering after consulting with attorneys about trying to pursue justice for her. She was at her most vulnerable. It was painful and uncomfortable, but he knew he had to do it.

At the time, he didn’t want to make a documentary, but he eventually decided others needed to know what happened.

“When I started to find out about this universal thing, about the third leading cause of death, and then the eICUs, I thought I really have to tell people about what I just found out,” Burrows says. “Because I’m a pretty informed guy and I didn’t know about any of this stuff.”

Although he’s done his best to make sure his mother is comfortable, Burrows says he hasn’t been able to give her what she really wanted, which was to get her life back.

“I had a great mom and I really tried hard to give her everything she wanted and I couldn’t give her any of that,” he says. “She wanted to go home. She wanted to drive. She wanted her life back.”

Burrows says he hopes that as people watch the film, they realize they need to ask thoughtful questions when it comes to their health care, and he stressed the importance of having a patient advocate in case things like this happen.

“You need to shop for doctors and hospitals like you’d shop for a car,” he says. “You know, shop like your life depends on it because we found out that it does.”

NPR’s Sarah Handel and Cindy Johnston produced and edited the audio for the story. Wynne Davis adapted it for Web.

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