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. 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 opioid-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, outweigh 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 parents and medical professionals both 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 is 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 have 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.

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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Right now, there are dozens of patients — U.S. citizens — in New Zealand hospitals who are fighting the clock. They have only a few weeks to recover and get home to the tiny island of American Samoa, a U.S. territory in the South Pacific.

“We have a cancer patient that is coming back in December,” says Sandra King Young, who runs the Medicaid program in American Samoa. “We can only give him six weeks of chemo, radiation and surgery. He has a good chance of survival if he has the full year of treatment, but not six weeks. The patient and family understand, and since they have no money, they have agreed to come back.”

The federal money to fully fund the Medicaid program in American Samoa and in all other U.S. territories is about to run out. As a consequence, the off-island referral program to treat conditions that the territory doesn’t have the local capacity or facilities to treat — the program that brought these patients to New Zealand — is getting shut down.

“It’s devastating for those people who need those lifesaving services,” King Young says. “People who need cancer treatment won’t get it. Children with rheumatic heart disease won’t get the heart surgeries that they need.”

All five of the U.S. territories affected — collectively home to more than 3 million Americans — are now desperately trying to figure out how to keep Medicaid running with only a fraction of the money they’ve had for the last several years. If Congress doesn’t increase the amount of designated money by the end of the year, the U.S. Virgin Islands and Guam say they would need to cut their Medicaid rolls in half; Puerto Rico says it would need to cut back dental and prescription drug services.

This is what people working on the issue have come to call the “Medicaid cliff.”

How did we get here?

When it comes to Medicaid, the federal government treats U.S. territories differently from how it treats states.

In U.S. states, the amount that the federal government contributes to Medicaid varies based on a formula in the law that relies on per capita income in each state. For instance, Alabama has a match rate of 72%; what this translates to is that for every dollar Alabama spends on Medicaid, the federal government contributes about $2.57 to the program.

But that’s not how it works in the territories, where even though the populations are all low income, the federal government’s match rate is set in statute at 55%. What this translates to is that for every dollar a U.S. territory spends on Medicaid, the federal government contributes $1.25.

The other significant difference is that the federal contribution to Medicaid in the territories is capped, with a set allotment of federal funds every year. Federal spending on Medicaid in states is not.

The low matching rate and the annual cap — that’s pretty much how it has always been for Medicaid in the territories, says Robin Rudowitz, who co-directs the Program on Medicaid and the Uninsured at the Kaiser Family Foundation. “These particular provisions historically have always been part of how they have been financed,” she says.

Here’s how the territories found themselves peering over the “Medicaid cliff.” For the last few years, the territories have had billions of dollars more in federal funding to run their programs than their usual capped allotments. First, the Affordable Care Act provided a one-time grant of $7.3 billion (which kicked off in 2011) for the territories’ Medicaid programs. Then, in 2017, after two Category 5 hurricanes ravaged Puerto Rico and the U.S. Virgin Islands, an extra $4.9 billion designated for their Medicaid programs was added to the 2018 Bipartisan Budget Act.

Now, we’ve come to the cliff’s edge. Most of these two pots of money ran out at the end of September, with just a bit of funding from the ACA still available through the end of 2019.

That leaves, essentially, just the capped allotment of federal dollars for each of the territories — far less than what the territories have come to rely on to provide care to their Medicaid enrollees in recent years.

“The capped financing amounts were low and did not meet all of the needs of the population in the territories,” says Rudowitz. If the additional federal contributions are gone for good, she says, “given the share that they represent of the financing for Medicaid in these territories, it would mean major changes and reductions in care.”

The territories have known that this funding cliff was coming for years — the end to a major portion of the money was written into the ACA. Island health officials and care providers hoped Congress would have legislated a more permanent solution by now, but it hasn’t.

In recent months, Congress has passed continuing resolutions that have allowed the territories’ Medicaid programs to keep limping along. But without legislation that appropriates more money, the territories’ Medicaid programs all are in serious trouble.

The Medicaid and CHIP Payment and Access Commission, known as MACPAC, a nonpartisan government group that advises Congress on Medicaid policy, projected in July that all the territories will have budget shortfalls in 2020. When considered altogether, according to MACPAC’s report, their Medicaid programs will be more than $1 billion short.

This is why Medicaid directors in the U.S. territories are all sounding the alarm. King Young, of American Samoa, points to news coverage as far back as the 1960s that described her island as “America’s Shame in the South Seas” because of rampant pollution and neglect.

“Right now, this is the United States’ shame in the islands,” she says. “Tell me if that’s acceptable in the United States, to stand by and say, ‘Oh, sorry, we can’t give you that stent or that pacemaker, so it’s likely that you’ll have a stroke or heart attack and — that’s it.’ That’s what it means not to have enough Medicaid funding for the territories.”

“Full-court press” in Congress

The territories have been lobbying Congress, urging members to appropriate more funds for their Medicaid programs so health officials on the islands can avoid these hard choices — between, for instance, keeping a hospital going and paying for a patient’s cancer treatment.

Each territory has a nonvoting delegate in Congress. Puerto Rico also sent an additional delegation from the island last week to make the case to lawmakers that something must be done to stave off disaster.

“I would say that we’ve been doing a full-court press this entire calendar year,” says Jennifer Storipan, executive director of the Puerto Rico Federal Affairs Administration. “Gov. [Wanda] Vázquez has said that Medicaid funding is her highest priority for the island right now.”

A bill to temporarily increase funding to the territories’ Medicaid programs was passed by the House Energy and Commerce Committee in July but has yet to make it to the floor for a vote. It would greatly increase the federal match rate for Medicaid in all the territories and allocate a bonus $3 billion a year — but only for the next four years. There is no companion bill in the Senate.

“We’re in active negotiations with the Senate, but there is some opposition to our bill in the Senate,” says Rep. Darren Soto, D-Fla., who introduced the House legislation with Rep. Gus Bilirakis, R-Fla. Both represent districts in central Florida that have huge Puerto Rican populations, and Soto is of Puerto Rican descent. In the House, the bill has bipartisan support.

Opponents of the bill in the Senate say they worry that the billions of dollars that the territories are requesting could be misspent. Some senators have raised particular concerns about Puerto Rico. During a recent corruption probe, a Puerto Rican Medicaid official was arrested — that news emerged just a few days before a committee hearing on the territories’ Medicaid bill in July.

“So that didn’t help,” Soto says. Integrity provisions were added to the House bill, he says, specifically addressing concerns about Puerto Rico. “We do need to take it seriously and make sure that tax dollars are safeguarded,” he says, but adds, “There have been fraud instances in many states too, and we don’t take away their Medicaid funding.”

Some congressional Republicans note that the funding cliff was created by the Affordable Care Act, which gave extra funding to the territories for a limited time. In a letter to Secretary of Health and Human Services Alex Azar in July, several Republican members of the Senate Finance Committee raised concerns about Puerto Rico’s Medicaid spending.

“We are again confronting proposals for what amounts to another extension of boosted funding with no permanence or certainty and without any resolution of the Medicaid funding cliff constructed as part of the ACA,” they wrote.

“It is true: Giving these additional funds with a set expiration date, the legislation itself did create the cliff,” acknowledges the Kaiser Family Foundation’s Rudowitz. However, she says, Congress now should consider “the implications of letting that cliff happen and what that means to the health care systems in these territories.”

Planning for the worst

Medicaid program administrators from each of the territories gathered in an impromptu meeting outside the annual Medicaid directors conference last week. They have spent a lot of time together in Washington recently, testifying before congressional committees about the Medicaid funding crisis as it approaches.

“We were here in May. We were here in June,” Michal Rhymer-Browne, assistant commissioner with the Virgin Islands’ Department of Human Services, told NPR that day. “We pleaded. We shared ourselves — everything that we could.”

Despite their pleas, Congress has yet to act.

There are three options for managing a slashed budget for a program like Medicaid: reduce the size of payments to providers, cut the rolls or cover fewer services. All the territories say there’s no way to go lower on provider payments — Puerto Rico’s struggle with provider flight because of low pay is well known. So cutting the rolls and covered services is where the programs would need to find cuts, representatives of the territories say.

“Guam and [the Northern Mariana Islands] are about to topple over the cliff,” Rhymer-Browne says. “And for the Virgin Islands, we are nearing the cliff and seeing the bottom right now.”

Many of the territories would like to make improvements in the care they provide — invest in better facilities, recruit great health care providers, improve preventive care. All of that comes with upfront costs, they say, and they’ve had so much budget uncertainty that it has been impossible to move forward with those kinds of projects.

Right now, they’re just trying to keep the lights on.

“The urgency is here for us to let our congressional members know — even going to January is extremely dangerous,” Rhymer-Browne says. “It’s already catastrophic for our territories. We really need them to make a move.”

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It was a moment of genuine bipartisanship at the House Ways and Means Committee in October, as Democratic and Republican sponsors alike praised a bill called the “Restoring Access to Medication Act of 2019.”

The bill, approved by the panel on a voice vote, would allow consumers to use their tax-free flexible spending accounts or health savings accounts to pay for over-the-counter medications and women’s menstrual products.

Assuming the measure ultimately finds its way into law, it would also represent the latest piece of the Affordable Care Act’s financing to be undone.

Over-the-counter medication had been eligible to be considered a pretax expenditure in this way, before the ACA. But that eligibility was eliminated as part of a long list of new taxes and other measures that were designed to generate revenue to help pay for expanding health coverage to more people — a roughly $1 trillion cost of the health law over its first 10 years.

“It is paid for. It is fiscally responsible,” said President Barack Obama as he signed the ACA into law in 2010.

But not so much anymore. Many of the taxes and other provisions aimed at paying for that expanded health coverage “have been eliminated, delayed or are in jeopardy,” says Marc Goldwein of the Committee for a Responsible Federal Budget, a nonpartisan budget watchdog group. “All this stuff, it turns out, is very unpopular.”

The first piece of financing to disappear happened before most of the law even took effect. In 2011, Congress repealed a requirement that small businesses report to the IRS any payment of more than $600 to a vendor. The idea was that if more such payments were reported to taxing authorities, more taxes due on that income would actually get paid.

But small businesses complained — loudly — that the new paperwork requirement would be excessive, and Congress (and Obama) eventually agreed. The change alone eliminated an estimated $17 billion in ACA financing over 10 years.

Next, in 2015, Congress delayed (for the first time) the “Cadillac tax,” a 40% tax on the most generous employer health plans; one goal of that tax had been to curb excessive use of medical services.

That congressional delay came after intense lobbying by a coalition of business, labor and patient advocacy groups that banded together in a group called the Alliance to Fight the 40. It first got Congress to delay the Cadillac tax’s implementation from 2018 to 2020, then further pushed that date to 2022. And this past summer the House voted overwhelmingly to altogether eliminate the tax, which had been estimated to raise nearly $200 billion over the next decade.

Also on ice, thanks to that 2018 bill, are levies that were supposed to be paid by medical-device makers and health insurance companies, originally worth a combined $80 billion in financing during the law’s first decade.

Yet another — albeit fairly small — source of financing for the law went away in the 2017 GOP tax bill, which zeroed out the tax penalty for failing to have health insurance. The penalty raised $4 billion in 2018, the last year it was in effect.

Now it should be pointed out that the two ACA taxes that generate the most revenue are still on the books and collecting money. They are aimed at people with high incomes (more than $200,000 for individuals and $250,000 for couples) and were estimated to bring in more than $200 billion from 2010 to 2019. The measures, which don’t deal directly with services or provisions of the ACA, raise Medicare taxes on people at those higher incomes and increase taxes on unearned income.

The durability of those two taxes does not surprise Goldwein. Some are “unpopular to repeal,” he says, like “a tax on the rich that funds Medicare.”

What Goldwein does find surprising, though, is how durable some of the ACA’s other financing measures — reductions in spending ­— have been. For example, the health law, somewhat controversially, reduced Medicare payments to hospitals, insurance companies and a broad array of other health providers.

“The Medicare cuts have been for the most part surprisingly sustainable politically,” Goldwein says. Even when the GOP took over the House in 2011, its budget maintained the reductions from the ACA. So did the 2017 GOP “repeal and replace” proposal.

On the other hand, the appointed board of experts that was to rein in future Medicare spending, the “Independent Payment Advisory Board,” never got off the ground. Congress formally repealed it in 2018.

So what does this all mean? The past decade has shown that it has been relatively easy to make hard-won tax increases go away, suggesting that interest groups — particularly health industry groups representing drugmakers, insurers and hospitals — still wield a lot of power on Capitol Hill.

“Right now, everyone wants to cancel a 3% tax on the health insurance industry,” he says, referring to the current efforts of a major ad campaign by a coalition of small-business owners and insurance groups to get Congress to delay or cancel that ACA-linked tax.

Given how much money from health insurers is going into fighting that tax, he says, how likely is it that Congress — even one controlled by Democrats — would really “cancel the whole industry” by passing a “Medicare for All” bill?

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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