Three years ago, Jack Baker was born with neonatal abstinence syndrome (NAS), a condition common to infants whose mothers took opioids during their pregnancies.
Jack was 5 lbs, 3 oz and spent 3 weeks weaning at the Ohio State University Hospital. He had tiny puncture marks on his chest from tubes inserted to help him breathe, said his adoptive mother Carrie Baker.
Baker, the director of public policy and advocacy at Ohio Children's Hospital Association in Columbus, said his biological mother likely had not received any prenatal care.
Every 25 minutes, somewhere in America, a child is born with NAS, a condition characterized by low birth weight, feeding problems, seizures, diarrhea, vomiting, and difficulty breathing.
While society sympathizes with opioid-dependent infants, considered innocent victims, their mothers are often stigmatized, marginalized, and neglected. In their search for care, they find many clinicians are unwilling or unprepared to help them, experts toldMedPage Today.
"When you have those two problems, [pregnancy and addiction], together, that freaks doctors out and they say 'Oh you should go see somebody else. We don't know what to do,'" said Michelle Walsh MD, chief of the division of neonatology and perinatal medicine at University Hospitals, Rainbow Babies & Children's Hospital at Case Western Reserve University in Cleveland.
Walsh and Baker spoke at a Senate briefing focused on reining in the opioid epidemic in mid-September.
There's a definite shortage of knowledgeable addiction and mental health specialists and even fewer providers trained in addiction medicine willing to treat pregnant women, said Walsh.
Randy Easterling, MD, medical director for the Marion Hill Chemical Dependency Unit in Vicksburg, Miss., told MedPage Todaythat obstetricians and gynecologists are sued at higher rates than other physicians and the judgments against them are more frequent.
Knowing that pregnant women with substance abuse disorders have a higher chance of premature labor, fetal alcohol syndrome, and NAS, some clinicians decline to see these patients and side-step the risk. "If you lose, you lose big time."
Mothers themselves may fail to seek help. Eighteen states consider substance abuse during pregnancy "a form of child abuse" according to a study published in the journalSubstance Abuse: Research and Treatment in August. And in 2014, Tennessee passed a law to criminalize substance abuse during pregnancy, the article noted.
Fred Wells Brason II, president and CEO, Project Lazarus in Moravian Falls, N.C., toldMedPage Today that mothers will give birth at home or cross state borders to avoid punishment. "That's pushing people away from care not bringing them into care."
Also, prescription drug monitoring systems can have unintended effects. If a clinician notices a problem and "fires" the patient, he said, "that most often unfortunately does lead to heroin."
However, Wells Brason added, "One of the biggest problems of getting them into treatment is the way that they are treated -- that stigma of addiction."
Mishka Terplan, MD, MPH, medical director of the Behavioral Health System in Baltimore told MedPage Today, "All pregnant woman are concerned for the health and well-being of their baby-to-be. All pregnant women engage in behaviors to try and maximize that health."
Most women actually cut back on their substance abuse during pregnancy. "Those who can't stop are the ones who have a disease," he said.
No easy answers
Methadone, the only FDA-approved medication assisted therapy (MAT) for pregnant women with substance abuse disorders, "leads to improved maternal medical status decreased fetal morbidity and better prenatal care utilization," the study noted.
But methadone is only available in licensed clinics and only 9% of substance abuse treatment centers in the country provide medication assisted therapy.
In Mississippi, a woman might drive 2 or 3 hours to a clinic, noted Easterling, and that isn't sustainable. Another therapy, Subutex (buprenorphrine), which requires a license to prescribe, is often given to opioid-dependent pregnant women off-label, despite a warning label to the contrary. Easterling prescribes Subutex to his pregnant patients.
Michael Marcotte, MD, medical director of the HOPE program for opiate-addicted pregnant and recently pregnant women for the TriHealth hospital system in Cincinnati, Ohio, said there are some physicians unwilling to prescribe any MAT.
Babies born to heroin-addicted mothers have a higher risk of pregnancy complications and addiction than babies born to women given bupenorphrine or methadone, he said.
Terplan said many women with opioid dependencies have experienced serious trauma. Around one-third have a co-occurring psychiatric disorder and anywhere from 15 to 90% have ongoing partner violence. Many have a history of sexual abuse.
Marcotte noted that these psychosocial factors are another reason women need adequate behavioral therapy. Instead of simply taking another pill, they need to get at the root of their problems. They need to understand that they can get better, he said.
"If they don't have that [hope] there's a very high chance that they are going to relapse or they're going to overdose and die."
The big picture
A new bill, the Protecting Our Infants Act,introduced by Sen. Mitch McConnell (R-Ky.), was approved by the Senate Health Education, Labor, and Pensions Committee earlier this week. The bill would require the Agency for Healthcare Research and Quality to do the following:
- Examine the scientific literature on neonatal abstinence syndrome
- Evaluate the causes of the syndrome and treatments
- Evaluate treatment for pregnant women with opioid dependencies and barriers to care
- Develop recommendations for preventing, identifying, and treating opioid dependency and NAS
The bill also requires the Department of Health and Human Services to "evaluate and coordinate federal efforts to research and respond to NAS, and assist state health agencies with data collection" according to a press release from the American Congress of Obstetricians and Gynecologists (ACOG), who support the bill, along with the March of Dimes and the American Academy of Pediatrics. Currently there are no "standardized guidelines" for treating infants with neonatal abstinence syndrome, ACOG noted.
In addition to this legislation, clinicians told MedPage Today that stronger education, better integration of care, and changes in drug labeling and costs are critical to stemming the opioid and NAS crises.
Easterling said that if the FDA revised the drug label for Subutex to include opioid-addiction in pregnancy, more doctors would prescribe it. He would also urge its manufacturer to lower the price -- roughly $400 a month -- and demand more insurers cover the drug.
Wells Brason stressed the need to improve care coordination between the doctor's office and the rehabilitation clinic by ensuring "a warm hand-off" to a behavioral health provider whenever a problem is identified.
Marcotte said that care needs to be as accessible as possible. Even small things like having to reapply for Medicaid each year can prove to be barriers. "They're not functioning well in society, and so they get punished for that by losing their benefits."
Walsh wrote in an email that having state boards require a few hours of mandatory education on opiate prescribing pain medication as part of continuing medical education (CME) or licensure would help to grow best practices.
Despite the pressure clinicians are under to prescribe more powerful drugs, Walsh toldMedPage Today, "[a]ll of us need to be educated that it might be better [for patients] to be in a little bit of pain. That no pain may not be a realistic option."