Wednesday, January 2, 2019

Letter to Media


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 use.



Our organization, ­­­­­­­­­­­­­­­­­­­­­­­­­______________________, is devoted to working with and for people who use drugs, with the goals of meeting people where they are, and promoting “Any Positive Change”. We provide ________________ in the greater __________________ area.



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 is influencing bad policy, discouraging people from seeking health 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 communities. It is in this spirit that we offer you the following guidance.



Many of the problems attributed to illicit substances are actually caused by social determinants of health, or issues around acquisition and administration of substances, not the substances themselves. Experience of trauma, abuse, or other violence has been shown to be strongly associated with problem substance use. These are the true culprits, in addition to stigma, social and economic oppression, lack of access to treatment and other healthcare, and a prison industrial complex that ensures its profitability by continuing to classify a public health problem as a criminal problem.



Words like “addict” and “junkie” are hateful and have no place in civil society. 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 substance use:



Addiction

“Addiction” and “addict” are not medical terms and have not been so for decades. Addiction formerly referred to a set of behaviors, such as drug seeking and continuing to use despite negative consequences. It is a poorly defined term that is not used as a medical diagnosis. Instead, please use the medically correct terms from the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM V), such as “person with methylphenidate (Ritalin)® use disorder” or “Ava is physiologically dependent on opioids”.



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 cocaine 2-3 times a week.”



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 with a lifestyle component, 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, for which there is insufficient efficacy data.



OAT is the gold standard treatment for everyone with an opioid use disorder, but especially for pregnant people. It has been shown to increase patient’s access to health 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

Recommending permanent detox for all patients is often endorsed by those who are not fully informed on the medical complexities of substance use disorder. 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. All detoxing patients and their loved ones should be given naloxone (Narcan) and written instructions for administration. Under no circumstances should a person be pressured or coerced into detox, especially by law enforcement or a drug court judge. Medical decisions should be made by patients, with the counsel of healthcare providers.



Again, thank you for helping to bring attention to this issue. Please contact us at: ______________________ for any questions, or if you require information, more diverse views of substance use, or assistance with future pieces. If this is a topic of particular interest to you, please consider joining us in our work, to which your journalistic expertise would be a welcome addition!



 

  Joelle Puccio, BSN RN

Letter to Media - Perinatal


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