Recent research from West Virginia University suggests the rate of drug use during pregnancy in West Virginia is higher than federal estimates. Although many people who use drugs while pregnant are covered by insurance to pay for treatment, partly thanks to the Affordable Care Act’s Medicaid expansion, geography and limited treatment options prevent some from finding the care they need.

President Donald Trump’s declaration of the opioid crisis as a public health emergency should alleviate some of the burdens pregnant people in West Virginia face by allowing doctors to prescribe medication-assisted treatment, like buprenorphine, to pregnant people via telemedicine.

Not included in the declaration, however, is a commitment to pay for the programs that help people receive adequate care and find stability after pregnancy.

Janine Breyel, who heads the substance use during pregnancy division of the West Virginia Perinatal Partnership, does not have high expectations for federal support in the immediate future. “We’re a little jaded about where the priorities are,” said Breyel, who helped prepare a grant proposal for around $1 million to improve care for pregnant people who use drugs. The proposal was ultimately rejected by the federal government.

Assuming patients find drug-treatment care that’s close by and appropriate for pregnant people, the transition to healthy motherhood remains difficult. Stigma toward people who use drugs affects their search for employment, housing, and stability. Scaling up programs that address barriers to care and social reintegration could improve life for families across the state.

The Scale of the Problem

West Virginia is one of the poster states for discussing the effects of the opioid epidemic on families, particularly babies born with withdrawal symptoms, or neonatal abstinence syndrome. In 2013, the Centers for Disease Control and Prevention (CDC) estimated that 5.9 percent of babies born in West Virginia were exposed to drugs during pregnancy, while 3.3 percent went through withdrawal symptoms. Most other states hover below 10 percent. Researchers from West Virginia University announced in October an exposure rate of nearly 14 percent and a withdrawal rate of 5.3 percent for babies born in the state.

These rates confirm an anonymized study of umbilical cord tissue done in 2009 by the Perinatal Partnership. Breyel spoke to the recently released measurements. According to CDC data, “our numbers [in West Virginia] are higher than the rest of the country,” she said. “[West Virginia University researchers’] numbers are even higher, more accurate, and real-time.”

These measurements gauge drug use only and do not include smoking, which has harmful effects on mothers, fetuses, and newborns. “We have the highest rate of smoking while pregnant in the nation,” said Amy Tolliver, the West Virginia Perinatal Partnership’s director. According to Tolliver, over 90 percent of women who use illicit drugs while pregnant also smoke. The West Virginia legislature cut all funding for tobacco prevention in the state last year, though it also passed a tobacco-tax increase.

Getting to Care

Many who struggle with addiction turn to long-term, inpatient facilities for care, but, “When a mother needs recovery programming it’s harder for her to go to an inpatient facility because she doesn’t want to leave her child,” said Rebecca Crowder, executive director of Lily’s Place, a neonatal abstinence syndrome center, in Huntington, West Virginia. Lily’s Place provides medical care for infants, and also offers counseling and support for those infants’ mothers and families. It has treated around two-hundred infants since its inception in 2014.

Facilities like Lily’s Place offer valuable services to mothers close to urban areas in West Virginia. Other, more rural areas in the state lack any treatment options for people who are pregnant or who have recently given birth.

Some areas in West Virginia have mental-health clinics but do not treat people with substance-use disorders. Many areas have treatment centers for addiction but do not have medical staff trained to care for pregnant people who use drugs. According to Breyel, some facilities only offer abstinence or “cold-turkey” programs, instead of the evidence-backed course of action for pregnant people: medication-assisted treatment like methadone and buprenorphine.

“[In Morgantown, West Virginia,] we have women driving two hours to get services,” said Breyel. “If you have other kids, if you have other appointments you need to make, if you don’t have reliable transportation, that’s a huge burden.”

Being in Treatment

Assuming a person is able to find programs that will accommodate pregnant patients, stigma persists. An anonymous survey of nurses treating pregnant people who use drugs in West Virginia recorded the frustration many nurses feel.

“The opioid epidemic has taken a huge toll on our health-care system, and nurses are on the frontline of dealing with it,” said Breyel. A negative impression from a nurse or health care provider can perpetuate negative stereotypes, however, and interfere with recovery. “If you go in judging someone, they’re going to shut down,” said Breyel. “It creates this cycle where then the nurses are blaming the moms for not coming in and visiting the babies. Then the moms are not wanting to come in to visit the babies because they’re judged when they’re there, and made to feel bad.”

Facilities like Lily’s Place, where providers are focused on accommodation and avoiding judgment, face different barriers. Some Medicaid managed-care insurers refuse to fund treatment at Lily’s Place, despite the much lower cost compared to hospitals and the equivalent, or better, outcomes at Lily’s Place. Being unable to bill social insurance means Lily’s Place has to source 40 percent of its budget from fundraising and donations. The Cabell Huntington Hospital’s Neonatal Therapeutic Unit, which also cares for babies with neonatal abstinence syndrome, is often unable to refer patients to Lily’s Place because of this issue.

“[Cabell Huntington] will be busting at the seams, over their capacity, and we’ll be sitting half empty because we cannot take a baby from Ohio,” said Crowder. “A mother calls here, and wants her child to come here, and I have to tell them no, because they live in Ohio. This is a weekly occurrence.”

Crowder is hopeful for federal legislation that will help Lily’s Place reach a deal with Medicaid providers from other states, but the state of Ohio would also need to make policy changes to its Medicaid billing system. Said Breyel, the issue “goes back to our fragmented, complicated health–care system.”

More Is Needed

Angela Davis is the only social worker at Lily’s Place. She works with mothers to find housing, employment, and training after giving birth. After delivery, many mothers who manage addictions face significant obstacles to stability. “People are so angry with drug addiction right now, it’s ‘You’re costing us money with Narcan; you’re costing us money with health care; you’re costing us money.’” said Davis.

The paradox, according to Davis, is that while nobody wants to see people with substance-use disorders not working, “nobody wants to hire them …. Some people just don’t want to hire people that have had drug addictions; some people don’t want to rent to people who have had drug addictions,” said Davis. “We have to get past the stigma.”

In October, Melania Trump visited Lily’s Place to show the administration’s commitment to addressing the opioid crisis. Crowder, the director of the treatment center, is optimistic that the first lady’s tour will eventually help people with substance-use disorders. “The first lady came here with wonderful intentions, and I do believe she wants to help, and it’s probably going to take her a little bit of time to come up with a plan,” she said.

Any plan that makes a difference will require significant spending. Without more support and training for nurses, the stress of working with hard-to-treat patients will interfere with care. Without resources for social workers and programs that transition people who use drugs into stable employment and housing, recovery will be short-lived. Money alone will not solve these problems. However, any approach without significant investment is doomed to fail.