Babies born to mothers who used opioids during pregnancy represent one of the most distressing legacies of an opioid epidemic that has claimed almost 400,000 lives and ravaged communities.

In fact, many of the ongoing lawsuits filed against drug companies make reference to these babies, fighting through withdrawal in hospital nurseries.

The cluster of symptoms they experience, which include tremors, seizures and respiratory distress, is known as neonatal abstinence syndrome, or NAS. Until recently, doctors rarely looked for the condition. Then case numbers quadrupled over a decade. Hospital care for newborns with NAS has cost Medicaid billions of dollars.

Studies indicate more than 30,000 babies with the condition are born every year in the U.S. — about one every 15 minutes. Although their plight is mentioned in opioids-related litigation, there are growing concerns that those same children will be left out of financial settlements being negotiated right now.

Robbie Nicholson, a mother in Eagleville, Tenn., tried to comfort her second child while the baby slowly underwent withdrawal from drugs Nicholson had taken during pregnancy.

“The whole experience is just traumatizing, really,” Nicholson says.

Nicholson’s ordeal actually began right after her first pregnancy. To help with postpartum recovery, her doctor prescribed her a pile of Percocets. That was the norm.

“Back then, it was like I was on them for a full month. And then he was like, ‘Ok, you’re done.’ And I was like, ‘Oh my god, I’ve got a newborn, first time mom, no energy, no sleep, like that was getting me through,’ ” she says. “It just built and built and built off that.”

After developing a full-blown addiction to painkillers, Nicholson eventually found her way into recovery. In accordance with evidence-based guidelines, she took buprenorphine, a medication that helps keep her opioid cravings at bay. And then came another pregnancy.

But buprenorphine — as well as methadone, another drug used in medication-assisted addiction treatment — is a special kind of opioid. Its use during pregnancy can still result in withdrawal symptoms for the newborn, although increasingly physicians have decided that the benefits of keeping a mother on the medication, to help her stay sober and stable during pregnancy, outweighs the risk of her giving birth to a baby with neonatal abstinence syndrome.

Treatment protocols for NAS vary from hospital to hospital, but over time doctors and neonatal nurses have become better at diagnosing the condition and weaning newborns safely. Sometimes the mom and her baby can even stay together if the infant doesn’t have to be sent to the neonatal intensive care unit.

But not much is known about the long-term effects of NAS, and both parents and medical professionals worry about the future of children exposed in utero to opioids.

“I wanted her to be perfect, and she is absolutely perfect,” Nicholson says. “But in the back of my mind, it’s always going to be there.”

There are thousands of children like Nicholson’s daughter entering the education system. Dr. Stephen Patrick, a neonatologist in Nashville, says schools and early childhood programs are on the front lines now.

“You hear teachers talking about infants with a development delay,” he says. “I just got an email this morning from somebody.”

Studies haven’t proven a direct link between in utero exposure to opioids and behavior problems in kids. And it’s challenging to untangle which problems might stem from the lingering effects of maternal drug use, as opposed to the impacts of growing up with a mother who struggles with addiction, and perhaps unemployment and housing instability as well. But Patrick, who leads the Center for Child Health Policy at Vanderbilt University, says that’s what his and others’ ongoing research wants to find out.

As states, cities, counties and even hospitals go after drug companies in court, Patrick fears these children will be left out. He points to public discussion of pending settlements, and the settlement deals struck between pharmaceutical companies and the state of Oklahoma, which make little or no mention of children.

Settlement funds could be used to monitor the health of children who had NAS, to pay for treatment of any developmental problems, and to help schools serving those children, Patrick explains.

“We need to be in the mix right now, in schools, understanding how we can support teachers, how we can support students as they try to learn, even as we work out was there cause and effect of opioid use and developmental delays or issues in school,” he says.

But it’s a nuanced problem with no consensus on where money is most needed, even among those who’ve been working on the problem for years.

Justin Lanning started Nashville-based 180 Health Partners, which works with mothers at risk of delivering a baby dependent on opioids. Most are covered by Medicaid. And those Medicaid departments in each state pay for most of the NAS births in the U.S.

“We have a few departments in our country that can operate at an epidemic scale, and I think that’s where we have to focus our funds,” he says.

Lanning sees a need to extend government-funded insurance for new mothers, since in states like Tennessee that never expanded Medicaid, these moms can lose health coverage just two months after giving birth. That often derails the mother’s own drug treatment funded by Medicaid, he says.

“This consistency of care is so key to their recovery, to their productivity, to their thriving,” Lanning says of new mothers in recovery.

Robbie Nicholson now has a job at 180 Health Partners, assisting and mentoring pregnant women struggling with addiction. Nicholson says their biggest need is a stable place to live and reliable transportation.

“I just feel kind of hopeless,” she says. “I don’t know what to tell these women.”

There are many needs, Nicholson says, but no simple fix. Those who work with mothers in recovery fear any opioid settlement money may be spread so thin that it doesn’t benefit their children — the next generation of the crisis.

This story comes from NPR’s reporting partnership with Nashville Public Radio and Kaiser Health News.

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Herman Ware sits at a small, wobbly table inside a large van that’s been converted into a mobile health clinic. The van is parked on a trash-strewn, dead-end street in downtown Atlanta where homeless residents congregate.

Ware is here for a seasonal flu shot.

“It might sting,” he says, thinking back on past shots.

Ware grimaces slightly as the nurse injects his upper arm.

After filling out some paperwork, he climbs down the van’s steps and walks back to a nearby homeless encampment where he’s been living. The small cluster of tents sits below an interstate overpass, next to a busy rail line.

Ware hasn’t paid much attention to his medical needs lately, which is pretty common among people living on the street. For those trying to find a hot meal or a place to sleep, health care can take a backseat.

“Street medicine” programs, like the outfit giving Ware his flu shot, aim to change that. Mercy Care, a health care nonprofit in Atlanta, operates a number of clinics throughout the city that mainly treat poor residents, and also has been sending teams of doctors, nurses and other health care providers into the city’s streets since 2013. The idea is to treat homeless people where they live.

This public health strategy can now be found in dozens of cities in the U.S. and around the world, according to the Street Medicine Institute, which works to spread the practice.

Building relationships to give care

Giving shots and conducting exams outside the walls of a health clinic comes with unique challenges.

“When we’re coming out here to talk to people, we’re on their turf,” says nurse practitioner Joy Fernandez de Narayan, who runs Mercy Care’s Street Medicine program.

A big challenge is getting patients to accept help, whether it comes in the form of a vaccination or something simpler — like a bottle of water.

“We’ll sit down next to someone, like ‘Hey, how’s the weather treating you?’ ” she says. “And then kind of work our way into, like, ‘Oh, you mentioned you had a history of high blood pressure. Do you mind if we check your blood pressure?’ “

The outreach workers spend a lot of time forging relationships with homeless clients, and it can take several encounters to gain someone’s trust and get them to accept medical care.

Their persistent encouragement was helpful for Sopain Lawson, who caught a debilitating foot fungus while living in the encampment.

“I couldn’t walk,” Lawson says. “I had to stay off my feet. And the crew, they took good care of my foot. They got me back.”

“This is what street medicine is about — going out into these areas where people are not going to seek attention until it’s an emergency,” says Matthew Reed, who’s been doing social work with the team for two years.

“We’re trying to avoid emergencies, but we’re also trying to build relationships.”

“Go to the people”

The street medicine team uses the trust they’ve built with patients to eventually connect them to other services, such as mental health counseling or housing.

Access to those services may not be readily available for many reasons, says Dr. Stephen Hwang, who studies health care and homelessness at St. Michael’s Hospital in Toronto. Sometimes the obstacle — say, lacking enough money for a bus ticket — seems small, but is formidable.

“It may be difficult to get to a health care facility, and often there are challenges, especially in the U.S., where people don’t have health insurance,” Hwang adds.

Georgia is one of a handful of states that has not expanded Medicaid to all low-income adults, which means many of its poorest residents don’t have access to the government-sponsored health care program. But even if homeless people are able to get health coverage and make it to a hospital or clinic, they can run into other problems.

“There’s a lot of stigmatization of people who are experiencing homelessness,” Hwang says, “and so often these individuals will feel unwelcome when they do present to health care facilities.”

Street medicine programs are meant to break down those barriers, says Dr. Jim Withers. He’s medical director of the Street Medicine Institute and started making outreach visits to the homeless back in 1992, when he worked at a clinic in Pittsburgh.

“Health care likes people to come to it on its terms,” Withers says, while the central tenet of street medicine is, “Go to the people.”

Help, with respect

Mercy Care in Atlanta spends about $900,000 a year on its street medicine program. In 2018, that sum paid for direct treatment for some 300 people, many of whom got services multiple times. Having clinics on the street can help relieve the care burden of nearby hospitals, which Withers says don’t have a great track record when it comes to treating the homeless.

“We’re not dealing with them well,” Withers admits, speaking on behalf of American health care in general. In traditional health settings, homeless patients do worse compared to other patients, he says. “They stay in the hospital longer. They have more complications.”

Those extra days and clinical complications mean additional costs for hospitals. One recent estimate cited in a legislative report on homelessness suggested that more than $60 million in medical costs for Atlanta’s homeless population were passed on to taxpayers.

Mercy Care says its program makes homeless people less likely to show up in local emergency rooms and healthier when they do — which saves money.

It’s past sundown when the street medicine team rolls up to their final stop: outside a church in Atlanta where homeless people often gather. A handful of people have settled down for the night on the sidewalk. Among them is Johnny Dunson, a frequent patient of the street medicine program.

Dunson says the Mercy Care staffers have a compassionate style that makes it easy to talk to them and ask for help.

“You gotta let someone know how you’re feeling,” Dunson says. “Understand me? Sometimes it can be like behavior, mental health. It’s not just me. It’s a lot of people that need some kind of assistance to do what you’re supposed to be doing, and they do a wonderful job.”

Along with the medical assistance, the staff at Mercy Care give every patient big doses of respect and dignity. When you’re living on the street, it can be hard to find either.

This story is part of NPR’s reporting partnership with WABE and Kaiser Health News.

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During Wednesday night’s Democratic presidential debate, candidates touched on “Medicare for All,” “Medicare for all who want it” and other ways to reform the American health system.

But in the backdrop, it’s once again sign-up season for Affordable Care Act health plans.

Despite repeated efforts by Republicans in Congress to undo the ACA, the controversial law’s seventh open-enrollment period launched earlier this month to relatively little fanfare. It ends Dec. 15.

Individual plans for 2020 are cheaper — premiums are lower, on average, and in some areas, people who qualify for government subsidies could end up with no monthly payment. Do check the fine print of your policy — in some cases, the patient’s share of other costs may have gone up.

Meanwhile, a pending court case threatens to overturn the entire law, with no clear replacement plan in the works. The result has been a cloud of confusion and misunderstanding — some even say misinformation — about the availability of this health coverage.

Here’s what consumers need to know.

The ACA is intact — at least for now.

The Affordable Care Act is still the law of the land.

The GOP-led Congress gutted a key part of the law — the penalty for the so-called individual mandate — that required everyone to have coverage. But other key tenets of the ACA remain in place, including the individual marketplace it created where people can shop for health coverage.

You might not hear much about that this year. The Trump administration has dramatically scaled back its outreach and marketing budget for open enrollment — allotting about $10 million for such efforts, compared with the more than $100 million the Obama administration spent.

Lack of outreach, combined with Republican efforts to overturn or undermine the law, could give consumers a wrong impression, says Katie Keith, a health policy consultant who frequently writes about the health law.

So far, about 930,000 people have signed up for coverage. That’s still slightly lower than where things were last year — and first-day Website glitches may have played a role, suggests Sabrina Corlette, a research professor at Georgetown University’s Center on Health Insurance Reforms.

In week two of the sign-up period, enrollment was about 10% below what it was in last year’s second week – but the number of new customers has gone up.

“The irony is, things are really stable, and depending on your state, you can really save,” Keith says. “Without advertising and information, folks are going to miss out on the deals they could get.”

You can get a cheaper plan this year, but it will probably require a bit of work.

Those deals can be pretty significant. On average, premiums are down 4% nationally over last year for silver-level plans sold through the federal marketplace. In some states, they’re even cheaper.

Many people don’t realize that if their incomes are below 400% of the federal poverty level (just under $50,000 for an individual or about $103,000 for a family of four) they qualify for federal subsidies — tax credits that help them pay for individual marketplace plans, Corlette says. The federal government has an online calculator that indicates if you fit into this bracket.

That tax break can make it easier to find affordable, comprehensive coverage, Corlette says, and she recommends that people who already have 2019 ACA plans shop around the marketplace to make sure they get the best deal going into 2020. (What plans charge can change each year.)

People who bought coverage last fall and don’t shop around will be automatically reenrolled in those health plans — which may not be the best for their needs and may be more expensive than other options.

Also worth noting: Federal courts recently blocked a rule that would have penalized recent legal immigrants who use those subsidies. Known as the “public charge” rule, it would have counted that subsidy against people looking to stay longer in the United States.

The court ruling means that, at least for now, legal immigrants should also be able to purchase subsidized health insurance with no penalty, Corlette says.

“If you have concerns or are worried, you should consult an immigration attorney. But assuming you are a legal resident, nothing has changed in terms of your entitlement,” she says.

Not everything that looks like an ACA plan actually is one.

Consumers should be wary of plans that look like they meet ACA standards but actually fall short.

The Trump administration has loosened restrictions on non-ACA policies — “short-term plans” — so that they can last up to 12 months. (Previously they lasted only three months and were treated as bare-bones, stopgap insurance.)

Pitched as a cheaper alternative to ACA coverage, they are allowed to factor in preexisting medical conditions — and can deny insurance to people because of their medical history. They also generally cover a much narrower range of benefits. Some have lifetime caps on benefits, and they typically don’t cover prescription drugs.

These plans are not eligible for federal subsidies.

“If you were to Google something like ‘ACA plan’ or ‘Obamacare plan,’ the first results will return insurances that are not ACA coverage,” Corlette warned. “A lot of it is going to be junky, skimpy coverage.”

One easy way to distinguish ACA-compliant plans from others: Make sure you’re shopping through healthcare.gov or an alternative set up by some states. Consumers who work with an insurance broker should be sure to communicate their desire to choose an ACA-compliant plan.

Meanwhile, federal courts are weighing a legal challenge that could strike down the ACA.

It’s not clear what would happen if that attempt to overturn the federal health law succeeds. But, for now, the case shouldn’t affect your coverage decisions, all sides agree.

A group of Republican attorneys general and governors filed a lawsuit in 2018 that argues that since the Supreme Court upheld the ACA in 2012 specifically because its individual mandate was deemed a valid exercise of Congress’ taxing power, reducing that tax to zero — as Congress did — makes the entire law unconstitutional. It’s an argument that many legal experts say is shaky, but a federal judge in Texas agreed with those who brought the suit.

The case, known as Texas v. Azar, is awaiting a ruling from the 5th Circuit Court of Appeals. The Trump administration, meanwhile, has declined to defend the federal health law. A group of Democratic attorneys general has stepped in, in their stead.

If the appellate court sides with the trial judge to overturn the ACA, the decision would likely be stayed and the case appealed to the Supreme Court. That could drag things out until next summer at the earliest.

The administration hasn’t indicated what it might do if the health law is struck down — a scenario that would gut the individual marketplace and eliminate the ACA’s consumer protections. But most experts agree it is also not likely to affect the 2020 coverage year.

Earlier this month, Joe Grogan, who heads the White House’s Domestic Policy Council, reiterated that the administration “will be prepared after that decision comes down” — adding that “nothing’s going to happen immediately.”

“This will surely go to the Supreme Court,” Grogan said. “It may or may not be decided — probably not decided — before the election.”

But it’s unclear what a White House response would involve. Neither President Trump nor Republicans in Congress have put forth a health care proposal that would maintain the protections the Affordable Care Act put in place.

That could be worrisome down the line, Keith and Corlette say. But any impact is far enough away that it shouldn’t influence the way consumers choose health insurance for the next year.

“Nothing will change right away, and it shouldn’t affect anybody anytime soon,” Keith says. “Go enroll. Pay your premiums.”

Emmarie Huetteman contributed to this report.

Kaiser Health News is a nonprofit, editorially independent program of the Kaiser Family Foundation. KHN is not affiliated with Kaiser Permanente.

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