The rise in opioid misuse has continued to receive attention across the country, and only more urgently in recent months as Republicans continue to press forward toward a repeal of the ACA with a disastrous replacement bill that makes deep cuts to the Medicaid program and would reduce or eliminate care for many people with substance use disorders. Often, the majority of this attention is on adults, who are the primary users of opioids. Less attention has been directed toward infants exposed to substances during pregnancy and who, as a result, may be born with an opioid use disorder. This condition in newborns is termed neonatal abstinence syndrome (NAS).
Opioid misuse is a multi-generational issue that requires supports along the lifespan. Massachusetts is disproportionately affected, placing it second in the nation for prenatal exposure (13.7 per 1,000) after the East/South Central region of the U.S. Nationally, the rate is about five babies out of every 1,000 births. The average duration of inpatient treatment for NAS is 19 days with an average cost of $30,000, placing severe strain on health systems to support affected infants and their families. Through this lens, the Massachusetts Interagency Task Force on Newborns with Neonatal Abstinence Syndrome published a highly anticipated report that provides key recommendations about how to address the current gaps in care and more deliberately address the needs of infants and parents through collaboration and coordination across health and human services.
It is worth noting that this Task Force is the product of robust advocacy by a Community Catalyst-led workgroup on NAS that included a broad array of members ranging from early intervention providers, legal advocates, child welfare advocates and children’s mental health advocates to physicians –pediatricians, obstetricians/gynecologists and medical residents. The lead children’s health advocacy partner, Children’s Health Access Coalition (CHAC), helped develop and champion legislative language in the last hours of the state’s budget deliberations in 2016 to include the revenue-neutral task force.
We are pleased with the report, although we note the need to address how all substance use disorders affect newborns, not just opioids. We also note that this response is much more productive than society’s response to the “crack baby” epidemic of the 1980s, when the babies at risk were born to women of color.
What did the Taskforce find?
There are 12 key findings in the taskforce report. It is worth a close review. We highlight some key themes that are important for advocates as they seek to influence state policy and practice:
- The Taskforce leverages a Five-Point Intervention Framework developed by National Center on Substance Abuse and Child Welfare (NCSACW) that is a multi-generational, trauma-informed approach and embraces a life-course approach to services and supports. In other words, substance use programming should be universally included at all stages of life – from adolescent prevention and pre-pregnancy through pregnancy, birth, neonatal and post-natal stages.
Evolving state-level health system transformation (HST) efforts are a lever to advance NAS/SEN priorities and best practices.
- The Taskforce recommends insurance reimbursement for care-coordination across provider types and a mechanism for provider accountability for warm handoffs to different levels of care. We would add that any patient care team be culturally/linguistically competent and include peer support through a family member, caregiver or trained peer support coach.
- Another set of recommendations highlights strategies to increase connections between the health system and community-based supports. We would also recommend cross-sector training so that different agency disciplines build trust across human service sectors.
Public health awareness campaigns around opioids continue to be important but could integrate more explicit messages about substance use and pregnancy. We suggest that they also include discussion of other substances, particularly alcohol, that do even graver damage to newborns.
Coverage is key. Many of the recommendations rely on affordable access to contraception, substance use treatment, mental health services and preventive services across the care continuum.
Data remains a barrier to coordinating care and tracking and monitoring quality and outcomes.
- Notably, the Taskforce calls for the creation of a statewide “dashboard” of key metrics to monitor progress on aspects of care for families impacted by perinatal substance use. See the report for a visual of the dashboard and its proposed elements. We recommend inclusion of analyses of race/ethnicity data to document health inequities and to develop targeted programs and improvements to advance health equity.
As you dig into this report – there are clear areas of policy and program improvement that advocates might consider in their states. For example:
- Extending early intervention eligibility for all babies exposed to substances (not just opioids) to a full three years;
- Increasing the number of inpatient mother-child treatment beds and requiring universal mother-child bonding protocols in hospital settings;
- Developing of a coaching track for specialized training in supporting families across the intervention points;
- Developing incentives for providers to develop post-partum support programming; and
- Developing and expanding recovery coaching for foster care involved families.
As advocates mobilize to protect our care through ACA and Medicaid defense – this Taskforce report highlights the important role that coverage and expanded SUD benefits play in providing a crucial doorway to recovery for adults and opioid exposure reduction for infants. We must highlight that this improves care for our youngest and most fragile consumers. The Taskforce report also provides advocates a set of actionable priorities to set in motion in their states. Our infants and families cannot wait.
A special thank you to Gabrielle Orbaek White for her leadership on the NAS workgroup and to Mark Friedman for his participation in the Advisory Council. Finally, a thank you to Maryanne Mulligan for her tireless advocacy on behalf of Early Intervention providers and Suzanne Curry for her legislative advocacy.