Dear _________________,
We are writing in response to your recent piece,
“____________________________”. We are very grateful to you for helping bring
attention to the issue of substance exposure in the perinatal period.
We
wish to provide you with some guidance regarding accurate language and evidence
based clinical concepts that may aid you in any further work on this topic.
Despite a rich literature of evidence based best
practices, and myriad guidelines and reviews, public opinion is slow to change. Intractable stigma against people who use drugs, and
especially pregnant people who use drugs, is influencing bad policy,
discouraging families from seeking prenatal care and other services, and
causing people to die alone of preventable overdoses. Organizations like ours
simply do not have the public’s ear, try as we might. You do. Please partner
with us to advance our mutual goal of healthy families. It is in this spirit
that we offer you the following guidance.
Many of the
problems attributed to illicit substances may actually be caused by social
determinants of health, or issues around acquisition and administration of
substances, not the substances themselves. It is important to recognize
that 3% of pregnancies in the US are affected by a congenital anomaly. It is
irresponsible to attribute birth defects to substance use, and there is little
evidence to support doing so.
We firmly support people with substance use
disorders (SUD) in using whatever language they feel comfortable with when
describing themselves. We are in no way advocating for the censorship or rebuke
of subjects of this or future pieces. We
seek to create change only in the way others describe people with substance use
disorders.
We applaud
the progressive practices of the Associated Press as the update their AP
Stylebook:
Around the beginning of the year, in
January, we noticed that there was a hole in our guidance on addiction,” says
Jeff McMillan, an AP enterprise editor who was the lead author of the new
section. He adds, “As we began talking to experts, we learned that the language
that was traditionally used is changing, and we thought it would be good to
give people a vocabulary.
-
From The AP
Learns to Talk About Addiction. Will Other Media Follow? By Maia Szalavitz
Because We Believe that Language
Matters These are some of the things we’d like
journalists to know about discussing perinatal substance use:
Addiction
Babies
cannot be “born addicted”. Addiction refers to a set of behaviors, such as drug
seeking and continuing to use despite negative consequences. Newborns are of
course incapable of performing these behaviors. Secondly, it is a poorly
defined term that is not used as a medical diagnosis. The accurate way to
describe these babies is “infant with prenatal substance exposure” or “Ava was
exposed to buprenorphine (Subutex®) and sertraline (Zoloft®)
before she was born”.
The correct term for adults is “person with
substance use disorder (SUD)”. If a person has not been formally diagnosed but
feels that their use is a problem, you could describe them as a “person with
problematic substance use”. Otherwise, use neutral, descriptive language such
as “Jacob is a 27 year old computer programmer who smokes heroin 2-3 times a
week.”
Abuse
“Drug abuse” comes with all of the same issues listed above,
along with the tendency of the general public, clinicians, and lawmakers to
conflate drug abuse with child abuse or neglect. NPA joins ACOG, AWHONN,
ANA, AAP, and many more in opposing criminal punishment for pregnant people who
use drugs. Despite near unanimous agreement on this point by medical and
nursing experts, punitive policies remain the norm due to widespread
misinformation.
Neonatal
Abstinence Syndrome (NAS)
While NAS is still an acceptable term, a new term is
emerging to describe this temporary, treatable condition. Neonatal Opiate
Withdrawal (NOW) avoids use of the word “syndrome” which suggests a permanence
which is not accurate for these babies. It also specifies that the substance in
question is an opiate. There is no evidence based newborn withdrawal condition
for any other class of substances.
NOW is temporary, with most babies fully recovered
and ready to go home within days or at most, weeks. NOW is treatable, with
medications as well as nonpharmacological interventions, such as constant
holding, decreased stimulation, and frequent breastfeeding. The ability of
parents to room in with their baby is essential to providing these
interventions. Indeed, the most effective treatment clinicians have available
to them is the parent.
Opioid
Agonist Treatment (OAT)
OAT is preferable to the terms “Medication
Replacement Treatment (MRT)”, “Medication Maintenance Treatment (MMT)” or
Medication Assisted Treatment. The words “maintenance” and “replacement”
suggest that patients are not resolving their substance use disorder, but
merely substituting one substance for another. The term MAT stigmatizes Opioid Use Disorder
by suggesting that medication used in the treatment of OUD is not as important
as medication used in the treatment of other chronic health conditions, for
example, as insulin is used in the treatment of diabetes. Placing substance use disorders in a special category
reinforces existing negative stereotypes. OAT is value-neutral and precise in
that it excludes naltrexone, which is not recommended in pregnancy and for
which there is insufficient data even with non-pregnant people.
OAT is the gold standard treatment for pregnant
people with SUD. It has been shown to increase patient’s access to care,
including prenatal care, while reducing risk of relapse, and therefore, fatal
overdose. Parents on OAT medications should be represented as making the very
best choice for themselves and their child.
Detoxification
from Opiates in Pregnancy
For decades, it has been the standard of care to
discourage detox during pregnancy. This recommendation was based on limited
data obtained from a small number of case studies. Recently, the issue has been
the subject of more research. Some people have been able to detox without harm
to parent or baby, but the levels of preterm birth and fetal death remain
higher than in patients treated with OAT. One serious issue which is often
overlooked is that detox greatly increases the risk of relapse when compared to
OAT, and declining tolerance experienced during detox greatly increases risk of
fatal overdose. Because of these concerns, we advocate for extreme caution when
offering detox as an option to patients, and maintain that OAT is the safest
treatment plan for most. Under no circumstances should a family be pressured or
coerced into detox.
Again, thank you for helping to bring attention to
this issue. Please contact us at: ______________________ for any questions, or
if you require information, stories of perinatal substance use with happy
endings, or assistance with future pieces. If this is a topic of particular
interest to you, please consider joining one of our workgroups, to which your
journalistic expertise would be a welcome addition!
Workgroup on Perinatal Substance Use
Co-Chairs:
Erika Goyer, Parent, BA
Joelle Puccio, BSN RN
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