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"Small Victories of Survival in a Deeply Homophobic World": Current Realities and Paths Forward for Substance Use in the LGBTQIA+ Community
No full textAccording to the National Institute on Drug Abuse, members of the LGBTQIA+ community are disproportionately impacted by problematic substance use (National Institute on Drug Abuse, 2020). Despite this well-documented reality, there is still limited funding and access to substance use treatment for queer and trans people. This exploratory paper surveys the literature on the prevalence of substance use in the LGBTQIA+ community in the United States (US), highlighting the historical and cultural realities leading to this trend within the context of the minority stress model. The article then outlines a path forward, suggesting the best treatment models for social workers in the field. Suggestions include integrated healthcare, trauma-informed, LGBTQIA+-specific treatment models, cognitive behavioral therapy focusing on co-occurring Post-Traumatic Stress Disorder (PTSD) and substance use disorder, harm reduction, and crisis intervention outside of policing
The Ethical Need for a Fertility Decision-Aid for Transgender Adults of Reproductive Age
No full textPhoto by Alexander Grey on Unsplash
ABSTRACT
Current studies show that about half of transgender and gender-diverse (TGD) people wish to have children in the future. TGD patients who pursue gender-affirmation interventions must be aware of the impact that various treatments can have on fertility, as gender-affirming care through medical or surgical treatment can limit or alter reproductive potential. Many medical professional societies encourage providers to educate and counsel patients about the consequences of treatment and viable options for fertility preservation (FP) as early as possible, though patients may not be aware of all the family formation methods available. There is a significant need for a tool that thoroughly details not only the various opportunities for parenthood but the perceived cost, rates of success, and risks associated with each option. A fertility decision-aid would allow for a more robust informed consent process and shared decision-making for all individuals pursuing gender-affirming care.
INTRODUCTION
Over 1.6 million adults and youth in the United States, or about 0.6 percent of those age 13 and over, identify as transgender, according to a report released by The Williams Institute in June 2022.[1] Current studies show that approximately half of transgender and gender-diverse (TGD) people wish to have children in the future, which aligns with the rate of cisgender individuals who desire parenthood in some form.[2] Studies on parenthood show improved quality of life and mental health in TGD adults and decreased incidence of suicide in TGD women.[3] In one study, almost half of the TGD individuals who indicated an interest in parenthood said they wanted genetically related offspring.[4] However, medical or surgical therapies can limit reproductive potential.[5] Recent findings indicate that some TGD adults who underwent medical or surgical paths to affirmation regret decisions that may have led to their inability to have genetic children. Perhaps they did not know it was an option, faced barriers to care, or were not interested at the time.[6] Many medical professional societies, including the World Professional Association for Transgender Health (WPATH), the Endocrine Society, and the American College of Obstetrics and Gynecology, encourage providers to educate and counsel patients about the consequences of treatment and viable options for fertility preservation as early as possible.[7] This paper argues that TGD patients who pursue gender-affirmation interventions must be aware of the impact treatments can have on fertility and, ultimately, parenthood and that a design tool may help them understand the risks and make informed decisions.
l. Gender Affirmation Options
Some TGD individuals do not use medical or surgical therapies to feel affirmed in their identity.[8] Non-medical paths to affirmation include social and legal measures.[9] These reversible paths do not impact the individual’s future fertility potential. TGD individuals can follow different paths of gender-affirming care through social, legal, medical, and surgical affirmation.[10] Social affirmation can include using gender-affirming pronouns, names, and clothing.[11] Legal affirmation can include changing the gender and name on a birth certificate and other records in states where this is permissible.[12] Social and legal affirmations are reversible and do not impact fertility potential.
Medical affirmation involves the use of gender-affirming hormone therapy. Feminizing or masculinizing hormone therapy allows for the development of secondary sex characteristics that more closely align with the individual's gender identity.[13] No set regimen for treatment exists, as a patient’s goals will determine their individualized plan.[14] Some standard feminizing agents include estrogen, androgen-reducing medications, and progestins, while the common masculinizing agent is testosterone.[15] Gender-affirming hormone therapy is not currently seen as a definitive cause of infertility, as it is possible to discontinue treatment and see a noted reversal of intended effects.[16] Research findings suggest that hormone therapy should stop for a minimum of three months to reverse any treatment effects.[17] The only available data on long-term hormonal therapy use is inconsistent, based on observational studies with varying duration and doses.[18] Individuals can stop gender-affirming hormone therapy, but its lasting impact on fertility is unknown.[19]
A TGD individual may choose to undergo surgical interventions that do not impact fertility. These interventions can masculinize or feminize body parts to allow a patient’s physical appearance to align with their gender identity.[20] This care could include breast augmentation for TGD women and Adam’s apple reduction or breast reduction for TGD men.[21] Other surgical interventions will impact TGD individuals’ fertility. Genital surgery for a TGD woman can include the removal of the penis and scrotum (penectomy and orchiectomy) and the construction of a vagina and labia (vaginoplasty and valvuloplasty).[22] A TGD man can have removal of the ovaries and uterus (oophorectomy and hysterectomy) and construction of a penis and scrotum (metoidioplasty, phalloplasty, and scrotoplasty).[23] Following these gender-affirming surgeries, individuals are infertile due to the removal of their reproductive organs.[24] These procedures are irreversible and directly impact reproductive capacity in TGD individuals.
ll. Fertility Counseling to Explain Paths to Parenthood
Patients receiving gender-affirming care should have the opportunity to learn about the various ways to achieve parenthood, including fertility preservation. Family formation methods include sexual intercourse, artificial insemination, surrogacy, and adoption or foster care.[25] These methods apply to non-TGD people as well. Patients may not be aware of the various means of family-building, so accurate and expansive fertility counseling is essential before initiating medical or surgical affirming care. The frequency with which TGD individuals receive fertility counseling and how thorough it is, is unclear. When surveyed about fertility preservation, healthcare providers reported a lack of confidence in discussing fertility preservation with patients due to gaps in their knowledge on best practices, success rates, and regret rates in patients who did not preserve fertility. They also had varied perceptions of their role in treating patients and whether they should discuss family planning.[26] Patients have reported receiving an overview of fertility options from their primary transgender-healthcare providers before being referred to reproductive specialists.[27] While this is an essential step for patients seeking more information about their opportunities for parenthood, only 16 percent of Society for Assisted Reproductive Technology member clinics share information about options for transgender individuals on their websites.[28]
Providers of transgender health care do not, and may not be trained to, provide adequate counsel to patients. Patients also cannot give informed consent for fertility or gender-affirming care interventions without more information on the benefits and burdens of all available treatments. Current literature demonstrates a need for a decision aid that thoroughly details not only the opportunities for parenthood but the perceived cost, rates of success, and risks associated with each option.[29] This tool could foster a more informed dialogue between an individual and their care team. A fertility decision aid would also allow for a more robust informed consent process for all individuals pursuing gender-affirming care.
Regardless of the affirmation path chosen, a TGD individual should have early and frequent conversations with their care team regarding fertility. The World Professional Association for Transgender Health (WPATH) asserts that healthcare professionals should discuss fertility preservation options before initiating gender-affirming hormone therapy or surgery. The American College of Obstetrics and Gynecology states that “fertility and parenting desires should be discussed early in the process of transition, before the initiation of hormone therapy or gender affirmation surgery.”[30] The Endocrine Society writes that “all individuals seeking gender-affirming medical treatment should receive information and counsel on options for fertility preservation prior to initiating puberty suppression in adolescents and prior to treating with hormonal therapy in both adolescents and adults."[31] These conversations are essential even if the patient is not interested in parenthood at the time. WPATH addresses the potential for regret, as cases of individuals who received hormone therapy and genital surgery and later desired genetically related children have been identified.[32]
TGD patients pursuing gender-affirming care should assess their individual fertility goals to better understand the many ways to build a family. Surveys of TGD adults show that participants want to become parents in various ways. In one study, 31.3 percent of those surveyed wanted to become parents through adoption, 25 percent wanted children through sexual intercourse, 15.6 percent through surrogacy, 12.5 percent using donor sperm, 9.4 percent using a known sperm donor, and 6.3 percent through the foster care system.[33] TGD women showed a significant interest in adoption (75 percent of participants), whereas more than half of TGD men wanted to become parents through sexual intercourse or pregnancy (58.3 percent).[34] These fertility goals should be acknowledged and discussed with the care team to guide decision-making about fertility preservation.
lll. Fertility Preservation
Individuals who wish to share their genetic makeup with their child will usually need to speak with a reproductive specialist about fertility preservation options. They are the same as those for cisgender individuals using fertility services before cancer treatment or elective preservation.[35] For TGD adults with ovaries, this includes freezing embryos (using donor or partner sperm) or ovarian tissue.[36] While no longer viewed as an experimental treatment, professionals offer tissue freezing to few patients due to a lack of data on its safety and efficacy.[37] For TGD adults with testicles, freezing sperm and preserving testicular tissue can preserve the ability to have biological children.[38]
Fertility preservation numbers for TGD adults remain low. A study showed that 76.6 percent of TGD men and 76.1 percent of TGD women considered fertility preservation, but only 3.1 percent and 9.6 percent, respectively, initiated it.[39] Success rate, cost, need for travel, and elevated risk of gender dysphoria likely lead to lower use of fertility preservation.[40] According to the American Society for Reproductive Medicine, the average cost of an IVF cycle in the US is 2,000 per cycle.[42] There are also associated costs to freeze and store sperm and eggs.[43] Insurance coverage and physical location impact the costs and how the patient bears the costs.[44] For those who do not have sufficient or any insurance coverage, fertility preservation may not be feasible.
Of additional significance for this population, fertility preservation techniques can exacerbate gender dysphoria as the patient must produce gametes associated with the gender they do not recognize.[45] For TGD women, masturbating in a clinical setting or sperm banking for sperm cryopreservation can cause severe distress.[46] Furthermore, fertility preservation for TGD men can be challenging and invasive. A transvaginal ultrasound exam is a requirement for the cryopreservation of embryos and oocytes.[47] This exam can cause significant distress as the procedure does not align with their male identity.[48] Controlled ovarian stimulation cycles require two weeks of daily gonadotropin injections, and the patient is given anesthesia for oocyte retrieval.[49] Furthermore, TGD men undergoing fertility preservation must discontinue testosterone use, and menstruation can resume.[50]
lV. Other Paths to Parenthood
a. Adoption
TGD adults can also pursue parenthood through adoption systems, though foster care is a temporary option. While almost one-third of surveyed TGD adults consider adoption a means to parenthood, cost and fear of discrimination can prevent them from following through.[51] TGD individuals have expressed a reluctance to pursue adoption due to the fear of discrimination by adoption agencies, attorneys, or families.[52] Nineteen states in the US allow child welfare agencies to refuse to provide services to LGBTQ+ families if it conflicts with the religious beliefs of the relevant people in the agency.[53] Nineteen states have no laws about discrimination during the adoption process based on sexual orientation or gender identity.[54] Only 29 states have statutory or regulatory protections against discrimination based on orientation and gender identity.[55]
b. Surrogacy
There are two types of surrogacies: traditional and gestational.[56] In traditional surrogacy, professionals fertilize the surrogate’s egg by the sperm of an intended parent or a sperm donor through intrauterine insemination. In gestational surrogacy, the surrogate undergoes IVF to implant the fertilized embryo.[57] Egg donation can be used for gestational surrogacy if necessary. Those considering surrogacy need to understand the specific laws in their state, as they can differ significantly.[58]
c. Intercourse
TGD individuals who have not undergone genital surgery can have intercourse with the intention of causing pregnancy. TGD men who have not had genital surgery can bear children. For those who have initiated hormonal therapy, limited data has been collected on the impact of gender-affirming hormone therapy on conception.[59] TGD men have gotten pregnant after discontinuing testosterone use.[60] TGD women who have not had genital surgery can have intercourse with a person with ovaries and produce sperm to fertilize an egg. Gender-affirming hormone therapy possibly affects sperm viability.[61]
V. A Decision Aid to Support Informed Consent and Shared Decision Making
For individuals pursuing gender-affirming care, time is of the essence when considering fertility preservation. In one review, transgender health doctors reported that most patients did not want to postpone treatment for fertility preservation procedures, even if they wanted children;[62] any delay in treatment can be distressing for those with gender dysphoria.[63]
Providers face several challenges when counseling patients about fertility. The WPATH guidelines pose an ethical dilemma for transgender health providers as limited data offers guidance about discussing fertility risks and recommendations with patients.[64] For TGD patients, limited and contradictory data about fertility outcomes before, during, and after gender affirmation exists, particularly for the lasting impact of gender-affirming hormone therapy.[65] For TGD women who have taken estrogen and stopped to pursue fertility preservation, data on sperm quality is mixed.[66] The data on when normal ovarian function resumes is variable for TGD men using testosterone who have stopped to pursue fertility preservation.[67] Much data comes from the oncofertility literature, which indicates that when providers use standardized counseling practices when discussing fertility with their patients, more patients undergo fertility preservation, and patient satisfaction increases.[68]
For individuals seeking gender-affirming care, there is a need for a decision aid that providers can utilize across multiple clinics and programs.[69],[70] Patients must be aware of the benefits, risks, and alternatives of any intervention to provide truly informed consent. When discussing fertility for TGD patients, this includes which fertility options are available at each stage of transition and the potential for a live birth with each option.[71] Furthermore, a decision aid would allow for shared decision-making, where the patient is an active participant and co-designer of their treatment plan.[72] Shared decision-making acknowledges the healthcare provider’s beneficence, knowledge, and experience while equally valuing the right to patient autonomy and respecting the ability of the patient to inform the provider.[73] A decision aid can help initiate the conversations between a patient and their provider that allow for a true partnership in decision-making.
A recent study investigated the efficacy and impact of a web-based fertility decision aid targeted at TGD adolescents and young adults.[74] This tool, titled Aid for Fertility-Related Medical Decisions (AFFRMED), significantly increased fertility knowledge in both youth and their parents while improving youth’s perceived ability to make fertility decisions.[75] Youth participants and their parents found the tool “feasible, acceptable, and usable.”[76] This initial study was small, with only eight adolescents or young adults and seven parents participating.[77] At large, the effectiveness of the trial will be the next step in determining the legitimacy of the aid for clinical use.[78]
A similar decision-making tool designed for TGD adults would also be useful. The tool can present an average range of expected costs as much variability exists and costs change over time. This tool should also include general information on what is required to pursue each path to parenthood. For example, a patient undergoing fertility preservation needs to know what steps are necessary after the cryopreservation of gametes for live birth.[79]
CONCLUSION
Individuals pursuing gender-affirming care must closely consider the impact of their medical and surgical care on their desire to become parents as early in their affirmation journey as possible. A decision aid can be helpful if it outlines the risks to fertility and options to preserve fertility, with the specific data necessary to make an informed choice. The tool should include the methods of fertility preservation, each step of the protocol and respective risks for each method, the expected timeline from initiation to completion, general success rates, options for remaining gamete disposition, and the average cost of treatment. This should include a list of steps to initiate the process for each method and any potential barriers or obstacles. For surrogacy, the tool should include the two types and the average cost. For intercourse, the aid should include information on risks for discontinuing gender-affirming hormone therapy and general success rates. Clinics and providers could elect to tailor the decision aid for their population to include specific information about local laws and the availability of services.
With a standardized fertility decision aid, TGD individuals can have a more thorough understanding of the opportunities and limitations placed on their reproductive capacity. Healthcare providers can feel more confident that their patients have access to relevant information regarding family-building before initiating medical or surgical affirmation. This allows for a more substantial informed consent and shared decision-making process, regardless of the decision made. A trial-tested decision-making tool for TGD adolescents and young adults exists that can serve as a model for creating aid for TGD adults of all ages. A fertility decision aid designed explicitly for TGD adults of reproductive age would be invaluable to support patients and healthcare providers in transgender health.
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[1] Herman, J.L., Flores, A.R., O’Neill, K.K. (2022). How Many Adults and Youth Identify as Transgender in the United States? The Williams Institute, UCLA School of Law
[2] Moravek M. B. (2019). Fertility preservation options for transgender and gender-nonconforming individuals. Current opinion in obstetrics & gynecology, 31(3), 170–176. https://doi.org/10.1097/GCO.0000000000000537
[3] Moravek (2019).
[4] Moravek (2019).
[5] Access to fertility services by transgender persons: an Ethics Committee opinion. (2015). Access to fertility services by transgender persons: an Ethics Committee opinion. Fertility and Sterility, 104(5), 1111–1115. https://doi.org/10.1016/j.fertnstert.2015.08.021
[6] Harris, R. M., Kolaitis, I. N., & Frader, J. E.. (2020). Ethical issues involving fertility preservation for transgender youth. Journal of Assisted Reproduction and Genetics, 37(10), 2453–2462. https://doi.org/10.1007/s10815-020-01873-9
[7] Bizic, M. R., Jeftovic, M., Pusica, S., Stojanovic, B., Duisin, D., Vujovic, S., Rakic, V., & Djordjevic, M. L. (2018). Gender Dysphoria: Bioethical Aspects of Medical Treatment. BioMed research international, 2018, 9652305. https://doi.org/10.1155/2018/9652305
[8] Rafferty, J., COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY HEALTH, COMMITTEE ON ADOLESCENCE, & SECTION ON LESBIAN, GAY, BISEXUAL, AND TRANSGENDER HEALTH AND WELLNESS (2018). Ensuring Comprehensive Care and Support for Transgender and Gender-Diverse Children and Adolescents. Pediatrics, 142(4), e20182162. https://doi.org/10.1542/peds.2018-2162
[9] Rafferty (2018).
[10] Rafferty (2018).
[11] Rafferty (2018).
[12] Rafferty (2018).
[13] Rafferty (2018).
[14] WPATH (2012).
[15] WPATH (2012).
[16] Bizic (2018).
[17] Bizic (2018).
[18] Moravek (2019).
[19] Finlayson, C., Johnson, E. K., Chen, D., Dabrowski, E., Gosiengfiao, Y., Campo-Engelstein, L., Rosoklija, I., Jacobson, J., Shnorhavorian, M., Pavone, M. E., Moravek, M. B., B
Policies Affecting Pregnant Women with Substance Use Disorder
No full textPhoto by 14825144 © Alita Xander | Dreamstime.com
ABSTRACT
The US government's approach to the War on Drugs has created laws to deter people from using illicit drugs through negative punishment. These laws have not controlled illicit drug use, nor has it stopped the opioid pandemic from growing. Instead, these laws have created a negative bias surrounding addiction and have negatively affected particularly vulnerable patient populations, including pregnant women with substance use disorder and newborns with neonatal abstinence syndrome. This article highlights some misconceptions and underscores the challenges they face as they navigate the justice and healthcare systems while also providing possible solutions to address their underlying addiction.
INTRODUCTION
Pregnant women with substance use disorder require treatment that is arguably for the benefit of both the mother and the fetus. Some suggest that addiction is a choice; therefore, those who misuse substances should not receive treatment. Proponents of this argument emphasize social and environmental factors that lead to addiction but fail to appreciate how chronic substance use alters the brain’s chemistry and changes how it responds to stress, reward, self-control, and pain. The medical community has long recognized that substance use disorder is not simply a character flaw or social deviance, but a complex condition that requires adequate medical attention.
Unfortunately, the lasting consequences of the War on Drugs have created a stigma around addiction medicine, leading to significant treatment barriers. There is still a pervasive societal bias toward punitive rather than rehabilitative approaches to addiction. For example, many women with substance use disorder lose custody of their baby or face criminal penalties, including fines and jail time.[1] These punitive measures may cause patients to lose trust in their physicians, ultimately leading to high-risk pregnancies without prenatal care, untreated substance misuse, and potential lifelong disabilities for their newborns.[2]
As a medical student, I have observed the importance of a rehabilitative approach to addiction medicine. Incentivizing pregnant women with substance use disorder to safely address their chronic health issues is essential for minimizing negative short-term and long-term outcomes for women and their newborns. This approach requires an open mind and supportive perspective, recognizing that substance use disorder is truly a medical condition that requires just as much attention as any other medical diagnosis.[3]
BACKGROUND
The War on Drugs was a government-led initiative launched in 1970 by President Richard M. Nixon with the aim of curtailing illegal drug use, distribution, and trade by imposing harsher prison sentences and punishments.[4] However, it is worth noting that one can trace the roots of this initiative back further. In 1914, Congress enacted the Harrison Narcotics Tax Act to target the recreational use of drugs such as morphine and opium.[5]
Despite being in effect for over four decades, the War on Drugs failed to achieve its intended goals. In 2011, the Global Commission on Drug Policy released a report that concluded that the initiative had been futile, as “arresting and incarcerating tens of millions of these people in recent decades has filled prisons and destroyed lives and families without reducing the availability of illicit drugs or the power of criminal organizations.”[6] One study published in the International Journal of Drug Policy in the same year found that funding drug law enforcement paradoxically contributed to increasing gun violence and homicide rates.[7]
The Commission recommended that drug policies focus on reducing harm caused by drug use rather than solely on reducing drug markets. Recognizing that many drug policies were of political opinion, it called for drug policies that were grounded in scientific evidence, health, security, and human rights.[8]
Unfortunately, policy makers did not heed these recommendations. In 2014, Tennessee’s legislature passed a “Fetal Assault Law,” which made it possible to prosecute pregnant women for drug use during pregnancy. If found guilty, pregnant women could face up to 15 years in prison and lose custody of their child. Instead of deterring drug use, the law discouraged pregnant women with substance use disorder from seeking prenatal care. This law required medical professionals to report drug use to authorities, thereby compromising the confidentiality of the patient-physician relationship. Some avoided arrest by delivering their babies in other states or at home, while others opted for abortions or attempted to go through an unsafe withdrawal prior to receiving medical care, sacrificing the mother's and fetus's wellbeing. The law had a sunset provision and expired in 2016. During the two years this law was in effect, officials arrested 124 women.[9] The fear that this law instilled in pregnant women with substance use disorder can still be seen across the US today.
Many pregnant women with substance use disorders stated that they feared testing positive for drugs. Due to mandatory reporting, they were not confident that physicians would protect them from the law.[10] And if a woman tried to stop using drugs before seeking care to avoid detection, she often ended up delaying or avoiding care.[11] The American College of Obstetricians and Gynecologists (ACOG) recognizes the fear those with substance use disorders face when seeking appropriate medical care and emphasizes that “obstetric–gynecologic care should not expose a woman to criminal or civil penalties, such as incarceration, involuntary commitment, loss of custody of her children, or loss of housing.”[12] Mandatory reporting strains the patient-physician relationship, driving a wedge between the doctor and patient. Thus, laws intended to deter people from using substances through various punishments and incarceration may be doing more harm than good.
County hospitals that mainly serve lower socioeconomic patients encounter more patients without consistent health care access and those with substance use disorders.[13] These hospitals are facing the consequences of the worsening opioid pandemic. At one county hospital where I recently worked, there has been a dramatic increase in newborns with neonatal abstinence syndrome born to mothers with untreated substance use disorders during pregnancy. Infants exposed to drugs prenatally have an increased risk of complications, stillbirth, and life-altering developmental disabilities. At the hospital, I witnessed Child Protective Services removing two newborns with neonatal abstinence syndrome from their mother’s custody. Four similar cases had occurred in the preceding month. In the days leading up to their placement with a foster family, I saw both newborns go through an uncomfortable drug withdrawal. No baby should be welcomed into this world by suffering like that. Yet I felt for the new mothers and realized that heart-wrenching custody loss is not the best approach.
During this period, I saw a teenager brought to the pediatric floor due to worsening psychiatric symptoms. He was born with neonatal abstinence syndrome that neither the residential program nor his foster family could manage. His past psychiatric disorders included attention deficit disorder, conduct disorder, major depressive disorder, anxiety disorder, disruptive mood dysregulation disorder, intellectual developmental disorder, and more. During his hospitalization, he was so violent towards healthcare providers that security had to intervene. And his attitude toward his foster parents was so volatile that we were never sure if having them visit was comforting or agitating. Throughout his hospital course, it was difficult for me to converse with him, and I left every interview with him feeling lost in terms of providing an adequate short- and long-term assessment of his psychological and medical requirements. What was clear, however, was that his intellectual and emotional levels did not match his age and that he was born into a society that was ill-equipped to accommodate his needs. Just a few feet away from his room, behind the nurses’ station, were the two newborns feeling the same withdrawal symptoms that this teenager likely experienced in the first few hours of his life. I wondered how similar their paths would be and if they would exhibit similar developmental delays in a few years or if their circumstance may follow the cases hyped about in the media of the 1980s and 1990s regarding “crack babies.” Many of these infants who experienced withdrawal symptoms eventually led normal lives.[14]
Nonetheless, many studies have demonstrated that drug use during pregnancy can adversely impact fetal development. Excessive alcohol consumption can result in fetal alcohol syndrome, characterized by growth deficiency, facial structure abnormalities, and a wide range of neurological deficiencies.[15] Smoking can impede the development of the lungs and brain and lead to preterm deliveries or sudden infant death syndrome.[16] Stimulants like methamphetamine can also cause preterm delivery, delayed motor development, attention impairments, and a wide range of cognitive and behavioral issues.[17] Opioid use, such as oxycodone, morphine, fentanyl, and heroin, may result in neonatal opioid withdrawal syndrome, in which a newborn may exhibit tremors, irritability, sleeping problems, poor feeding, loose stools, and increased sweating within 72 hours of life.[18]
In 2014, the American Association of Pediatrics (AAP) reported that one newborn was diagnosed with neonatal abstinence syndrome every 15 minutes, equating to approximately 32,000 newborns annually, a five-fold increase from 2004.[19] The AAP found that the cost of neonatal abstinence syndrome covered by Medicaid increased from 462 million from 2004 to 2014.[20] In 2020, the CDC published a paper that showed an increase in hospital costs from 572.7 million in 2016.[21] Currently, the impact of the COVID-19 pandemic on the prevalence of newborns with neonatal abstinence syndrome is unknown. I predict that the increase in opioid and polysubstance use during the pandemic will increase the number of newborns with neonatal abstinence syndrome, thereby significantly increasing the public burden and cost.[22]
In the 1990s, concerns arose about the potentially irreparable damage caused by intrauterine exposure to cocaine on the development of infants, which led to the popularization of the term “crack babies.”[23] Although no strong longitudinal studies supported this claim at the time, it was not without merit. The Maternal Lifestyle Study (NCT00059540) was a prospective longitudinal observational study that compared the outcomes of newborns exposed to cocaine in-utero to those without.[24] One of its studies revealed one month old newborns with cocaine exposure had “lower arousal, poorer quality of movements and self-regulation, higher excitability, more hypertonia, and more nonoptimal reflexes.”[25] Another study showed that at one month old, heavy cocaine exposure affected neural transmission from the ear to the brain.[26] Long-term follow up from the study showed that at seven years old, children with high intrauterine cocaine exposure were more likely to have externalizing behavior problems such as aggressive behavior, temper tantrums, and destructive acts.[27]
While I have witnessed this behavior in the teenage patient during my pediatrics rotation, not all newborns with intrauterine drug exposure are inevitably bound to have psychiatric and behavioral issues later in life. NPR recorded a podcast in 2010 highlighting a mother who used substances during pregnancy and, with early intervention, had positive outcomes. After being arrested 50 times within five years, she went through STEP: Self-Taught Empowerment and Pride, a public program that allowed her to complete her GED and provided guidance and encouragement for a more meaningful life during her time in jail. Her daughter, who was exposed to cocaine before birth, had a normal childhood and ended up going to college.[28]
From a public health standpoint, more needs to be done to prevent the complications of substance misuse during pregnancy. Some states consider substance misuse (and even prescribed use) during pregnancy child abuse. Officials have prosecuted countless women across 45 states for exposing their unborn children to drugs.[29] With opioid and polysubstance use on the rise, the efficacy of laws that result in punitive measures seems questionable.[30] So far, laws are not associated with a decrease in the misuse of drugs during pregnancy. Millions of dollars are being poured into managing neonatal abstinence syndrome, including prosecuting women and taking their children away. Rather than policing and criminalizing substance use, pregnant women should get the appropriate care they need and deserve.
I. Misconception One: Mothers with Substance Use Disorder Can Get an Abortion
If an unplanned pregnancy occurs, one course of action could be to terminate the pregnancy. On the surface, this solution seems like a quick fix. However, the reality is that obtaining an abortion can be challenging due to two significant barriers: accessibility and mandated reporting. Abortion laws vary by state, and in Tennessee, for instance, abortions are banned after six weeks of gestation, typically when fetal heart rhythms are detected. An exception to this is in cases where the mother's life is at risk.[31] Unfortunately, many women with substance use disorders are from lower socioeconomic backgrounds and cannot access pregnancy tests, which could indicate they are pregnant before the six-week cutoff.
If a Tennessee woman with substance use disorder decides to seek an abortion after six weeks, she may need to travel to a neighboring state. However, this is not always a feasible option, as the surrounding states (WV, MO, AR, MI, AL, and GA) also have restrictive laws that either prohibit abortions entirely or ban them after six weeks. Moreover, she may be hesitant to visit an obstetrician for an abortion, as some states require physicians by law to report their patients' substance use during pregnancy. For example, Virginia considers substance use during pregnancy child abuse and mandates that healthcare providers report it. This would ultimately limit her to North Carolina if she wants to remain in a nearby state, but she must go before 20 weeks gestation.[32] For someone who may or may not have access to reliable transportation, traveling to another state might be impossible. Without resources or means, these restrictive laws have made it incredibly difficult to obtain the medical care they need.
II. Misconception Two: Mothers with SUD are Not Fit to Care for Children
If a woman cannot take care of herself, one might wonder how she can take care of another human being. Mothers with substance use disorders often face many adversities, including lack of economic opportunity, trauma from abuse, history of poverty, and mental illness.[33] Fortunately, studies suggest keeping mother and baby together has many benefits. Breastfeeding, for example, helps the baby develop a strong immune system while reducing the mother’s risk of cancer and high blood pressure.[34] Additionally, newborns with neonatal abstinence syndrome who are breastfed by mothers receiving methadone or buprenorphine require less pharmacological treatment, have lower withdrawal scores, and experience shorter hospital stays.[35] Opioid concentration in breastmilk is minimal and does not pose a risk to newborns.[36] Moreover, oxytocin, the hormone responsible for mother-baby bonding, is increased in breastfeeding mothers, reducing withdrawal symptoms and stress-induced reactivity and cravings while also increasing protective maternal instincts.[37] Removing an infant from their mother’s care immediately after birth would result in the loss of all these positive benefits for both the mother and her newborn.
The newborns I observed during my pediatrics rotation probably could have benefited from breastfeeding rather than bottle feeding and being passed around from one nurse to the next. They probably would have cried less and suffered fewer withdrawal symptoms had they been given the opportunity to breastfeed. And even if the mothers were lethargic and unresponsive while going through withdrawal, it would still have been possible to breastfeed with proper support.
Unfortunately, many believe mothers with substance use disorder cannot adequately care for their children. This pervasive societal bias sets them up for failure from the beginning and greatly inhibits their willingness to change and mend their relationship with their providers. It is a healthcare provider’s duty to provide non-judgmental care that prioritizes the patient’s well-being. They must treat these mothers with the same empathy and respect as any other patient, even if they are experiencing withdrawal.
III. Safe Harbor and Medication-Assisted Treatment
Addiction is like any other disease and society should regard treatment without stigma. There is no simple fix to this problem, given that it involves the political, legal, and healthcare systems.
Punitive policies push pregnant women away from receiving healthcare and prevent them from receiving beneficial interventions. States need to enact laws that protect these women from being reported to authorities. Montana, for example, passed a law in 2019 that provides women with substance use disorders safe harbor from prosecution if they seek treatment for their condition.[38] Medication-assisted treatment with methadone or buprenorphine is the first line treatment option and should be available to all pregnant women regardless of their ability to pay for medical care.[39]
To promote continuity of care, health officials could include financial incentives to motivate new mothers to go to follow-up appointments. For example, vouchers for groceries or enrollment in the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) may offset financial burdens and allow a mother to focus on taking care of her child and her recovery.
IV. Mandated Substance Abuse Programs
Although the number of people sentenced to state prisons for drug related crimes has been declining, it is still alarming that there were 171,300 sentencings in 2019.[40] Only 11 percent of the 65 percent of our nation’s inmates with substance use disorder receive treatment, implying that the other 89 percent were left without much-needed support to overcome their addiction.[41] It is erroneous to assume that their substance use disorder would disappear after a period without substance use while behind bars. After withdrawal, those struggling with substance use disorder may still have cravings and the likelihood of relapsing remains high without proper medical intervention. Even if they are abstinent for some time during incarceration, the underlying problem persists, and the cycle inevitably continues upon release from custody.
In line with the recommendations by Global Commission on Drug Policy and the lessons learned from the failed War on Drugs, one proposed change in our criminal justice system would be to require enrollment and participation in assisted alcohol cessation programs before legal punishment. Policy makers must place emphasis on the safety of the patient and baby rather than the cessation of substance use. This would incentivize people to actively seek medical care, restore the patient-physician relationship, and ensure that they take rehabilitation programs seriously. If the patient or baby is unsafe, a caregiver could intervene while the patient re-enrolls in the program.
Those currently serving sentences in prisons and jails can treat their substance use disorder through medication assisted treatment, cognitive behavioral therapy, and programs like Self Taught Empowerment and Pride (STEP). Medication assisted treatment under the supervision of medical professionals can help inmates achieve and maintain sobriety in a healthy and safe way. Furthermore, cognitive behavioral therapy can help to identify triggers and teach healthier coping mechanisms to prepare for stressors outside of jail. Finally, multimodal empowerment programs can connect people to jobs, education, and support upon release. People often leave prisons and jail without a sense of purpose, which can lead to relapse and reincarceration. Structured programs have been shown to decrease drug use and criminal behavior by helping reintegrate productive individuals into society.[42]
V. Medical Education: Narcotic Treatment Programs and Suboxone Clinics
Another proactive approach could be to have medical residency programs register with the Drug Enforcement Administration (DEA) as Narcotic Treatment Programs and incorporate suboxone clinics into their education and rotations. Rather than family medicine, OB/GYN, or emergency medicine healthcare workers having to refer their patients to an addiction specialist, they could treat patients with methadone for maintenance or detoxification where they would deliver their baby. Not only would this educate and prepare the future generation of physicians to handle the opioid crisis, but it would allow pregnant women to develop strong patient-physician relationships.
CONCLUSION
Society needs to change from the mindset of tackling a problem after it occurs to taking a proactive approach by addressing upstream factors, thereby preventing those problems from occurring in the first place. Emphasizing public health measures and adequate medical care ca
The Ethics of Prescription Drug Monitoring Programs
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INTRODUCTION
Ever received a prescription for Xanax? You can bet that there was a record of it made in a digital database. Prescription Drug Monitoring Programs (PDMPs) contain detailed information about which controlled medications physicians prescribe individuals, including where, when, how much, by whom, and more. The programs allow physicians to glimpse into the life of each patient that visits them — sometimes before a single word is exchanged between them. Every state has a PDMP, and many states share the data they collect through it.[1]
Lately, I have been concerned with the application of these databases in the context of addiction management. In the United States, overdose deaths in a twelve-month period leading to May 2020 involving fentanyl alone increased 38 percent over the same period the previous year.[2] Regrettably, I lost a partner to addiction. I have seen the difficulties those struggling with substance use go through — the shame, the guilt, and the roadblocks to positive change. But perhaps the most frustrating part has been the treatment they endure by others who brand them with a scarlet letter. Unfortunately, this can sometimes include healthcare professionals.
ANALYSIS
My central concern revolves around the lack of an informed consent requirement before entering prescription data into the PDMP when the reason given for the prescription is addiction management. Our community already stigmatizes those struggling with substance use disorder. The thought of having their prescriptions recorded rightly makes many of them feel uneasy. In the past, federal patient confidentiality guidelines prohibited recording narcotic prescription data in the PDMP in these contexts for this very reason.[3] However, in 2020, this restriction was revised, paving the way for healthcare practitioners to have access to medication history. Narcotics officers may also have access to the PDMP data and have raided dispensing practices. Their access varies by state and may require a warrant or court order.[4]
Permitting access to sensitive prescription information can put patients in a position to be further alienated by their healthcare providers and it can impact access to healthcare. According to a recent study by the University of Michigan, having an active opioid prescription in your medical history is enough to deter 40 percent of primary care practices from accepting you as a patient.[5] Additionally, if medical professionals are hesitant to see patients who have legitimate opioid prescriptions, it stands to reason that patients who have prescriptions primarily known for addiction management will not fare much better. Studies suggest that those with prescription access cut off are twice as likely to turn to heroin.[6] Some die by overdose or suicide.[7]
To be fair, the current regulations do exhibit some regard for privacy. If patients receive medication through Federal “Part II” programs, their consent is required to record the prescription in the PDMP.[8] Unfortunately, many prescriptions are dispensed by private healthcare providers or sent to local pharmacies. When this is so, the consent requirement does not apply, making the privacy provision extensionally short-sighted.
I can understand why the healthcare and law enforcement communities would want easy access to prescription data. A central mission of the PDMP is to curb the diversion of controlled substances to nonprescription users and to help doctors better coordinate patient care. By curbing the diversion of opioid drugs specifically, it is thought that the rate of fatality related to opioid substances will also decline. If we monitor other opioid drugs like oxycodone so closely, we could monitor medications that manage addiction, such as Suboxone.
But the parallel between the two is not easily drawn. To be clear, addiction management medication like suboxone does not work on the opioid receptors to the same extent and in the same way that conventional opioids do.[9] Those that take suboxone for addiction frequently do not report feeling recreational effects. The medication has a ceiling effect where the receptors the substance targets become too saturated to allow for further effect, making abuse less likely. Lastly, the medication tends to outcompete rival opioids from occupying those receptors of the brain. Users often report that taking suboxone will inhibit them from feeling the effects of illicit opioids.
Characteristics like this make it harder to see why we should be as worried about the diversion of suboxone as diversion of other opioids like OxyContin. Even when suboxone is diverted, studies suggest that it is diverted to those with opioid addiction who wish to manage their withdrawals – exactly those whom we would want suboxone to be reaching – rather than those who are looking to abuse the medication.[10] In areas without major barriers to suboxone prescription, opioid death and addiction rates have fallen at a dramatic rate. In France, where there are no special waivers or provisions required for doctors to dispense suboxone, opioid overdose deaths have fallen by 79 percent since 1995.[11]
CONCLUSION
An informed consent requirement would allow those people trying to address their own drug misuse to maintain some privacy. As providing the data to practitioners has proven to disenfranchise some patients who have trouble finding care and could even expose them to law enforcement, it makes sense that some patients would not want to participate in PDMPs. The ability to opt out and the requirement of informed consent to opt in would give patients more control over their data. There are good reasons, then, to amend regulations at state and federal levels to exclude addiction related medication from the PDMP without explicit and informed consent from the patient.
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[1] PDMP TTAC. Accessed May 2, 2023. “PDMP Interstate Partners.” PDMP Assist. https://www.pdmpassist.org/Policies/Maps/PDMPInterstatePartners.
[2] CDC. 2020. “Overdose Deaths Accelerating During Covid-19.”
[3] ASAM. 2018. “Public Policy Statement on Prescription Drug Monitoring Programs (PDMPs)”
[4] Substance Abuse and Mental Health Services Administration (SAMHSA), U.S. Department of Health and Human Services (HHS). 2020. “Confidentiality of Substance Use Disorder Patient Records.” See also: PDMP TTAC. Accessed May 2, 2023. “PDMPs Authorized and Engaged in Sending Solicited and Unsolicited Reports to Law Enforcement Entities”. PDMP Assist. https://www.pdmpassist.org/pdf/Law_Enforcement_Entity_Table.pdf
[5] Lagisetty, et. al. 2019. “Access to Primary Care Clinics for Patients with Chronic Pain Receiving Opioids”
[6] Binswanger, et. al. 2020. “The Association between Opioid Discontinuation and Heroin Use: A Nested Case-Control Study”
[7] Oliva, et. al. 2020. “Associations between stopping prescriptions for opioids, length of opioid treatment, and overdose or suicide deaths in US veterans: observational evaluation.”
[8] Federal guidelines: 42 CFR Part II. 2021. “PART 2 - CONFIDENTIALITY OF SUBSTANCE USE DISORDER PATIENT RECORDS”
[9] U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration Center for Substance Abuse Treatment. 2004. “TIP 40.”
[10] Fiscella, et al. 2018. “Buprenorphine Deregulation and Mainstreaming Treatment for Opioid Use Disorder.”
[11] Auriacombe, et al. 2004. “French field experience with buprenorphine.”
The Push to Integrate Mid-Level Providers into Dentistry
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INTRODUCTION
Mid-level providers are not new to the field of medicine. Nurse practitioners and physician assistants have been providing direct care for patients with the oversight of licensed physicians for many years. As a result of their assistance, physicians can focus on complex cases and oversee a larger patient base. This, in turn, creates a more accessible healthcare system. Although many gaps remain between medicine and dentistry, mid-level providers may be the answer to expanding access to dental healthcare needs. Recently, mid-level providers have entered the field of dentistry in multiple states in the US. People commonly refer to this role as a dental therapist. A dental therapist works under a licensed dentist providing preventive and routine restorative care to expand dental healthcare to underserved populations.[1] This new addition to the workforce has proven to be beneficial in some regions but has opened a door to ethical debate among dentists and public health officials.
In 2009 Minnesota approved the first state-wide legislation in the US to legalize the role of dental therapists after seeing a drastic decline in their dentist-to-population ratio. The congregation of dentists in high-income and highly populated areas have left many communities in the US in need of dental care but unable to receive it locally. A case study performed by dental hygienists Minnesota, from 2003 to 2007, concluded that one in four primary school children presented with visible decay, and half of these cases were deemed urgent due to symptoms including toothaches and other oral pain.[2] Minnesota health professionals performed another case study which presented results that they believed to further strengthen the need for dental reform in the state. Over the course of a year, health professionals surveyed seven hospitals in the Minneapolis-St. Paul metropolitan area. The results showed over 10,000 emergency room visits were from dental-related problems such as abscesses or toothaches. These patients had untreated oral health problems, eventually leading to infection and unbearable pain. The total cost for these emergency room visits exceeded 24,000 in additional profit for the practice that year.[9] Expanding dental care to patients enrolled in Medicaid programs has been an ongoing issue. According to the American Dental Association, in 2018, around 30 percent of practicing dentists accepted Medicaid.
In 2012, a case study was conducted in Alaska, which collected the statistics produced by Rochelle Furry, a certified dental therapist. Over the course of a year, Furry saw 750 patients and performed 5,000 procedures. Furry’s addition to the team cost the supervising dentist 385,338, with a yearly net profit of $205,329.[10] Another benefit reported by dentists when integrating a dental therapist into their team was the ability to prioritize their focus toward more complex cases, leaving routine fillings and other minimally invasive procedures in the hands of the dental therapist. With the reduced education of dental therapists comes reduced costs per procedure. This may encourage patients who are uninsured or owe out-of-pocket payments and entice them to follow through with the diagnosed treatment.
II. Areas of Debate
Despite providing benefits to patients and supervising dentists, dental therapists are not prevalent throughout the US. Similar to the debate regarding mid-level providers like physician’s assistants and nurse practitioners, there are disputes between healthcare officials on whether the addition of dental therapists is an ethical solution to the disparities in access to oral care. The different levels of education between dentists and dental therapists spark debates on whether dental therapists have enough training to treat patients. Dentists are required to complete both a bachelor’s and a doctorate program, as well as pass rigorous board exams usually totaling eight years of additional education after a high-school degree. Although dental therapists perform more routine procedures that are minimally invasive, they are primarily working with populations that have received minimal oral care in the past, usually presenting with larger amounts of decay. This increases the complexity of cases that a healthcare worker with minimal training compared to a DDS or DMD attends to. While some patients prefer the low costs of procedures done by a dental therapist, others prioritize quality of treatment and believe only dentists are well-trained enough to provide it. Some argue that a doctorate-level medical professional should do irreversible procedures involving the permanent removal of the tooth surfaces, such as fillings, crowns, or extractions. This position also brings up the issue of a two-tiered healthcare system in which patients of low socioeconomic status are treated by providers with less training, while mid to upper class patients are treated by doctors. Some public health professionals argue there are better solutions. For example, the Academy of General Dentistry “White Paper on Increasing Access to and Utilization of Oral Health Care Services" suggests that one of the biggest challenges in achieving optimal oral health for all is “underutilization of available oral health care.”[11] This argument addresses the noneconomic barriers in seeking professional care, including the patient's behavioral factors, levels of oral health literacy, transportation, location, and cultural or linguistic preferences. This author concludes that increased access can be achieved with the current dentist supply, if optimally utilized, along with public health officials increasing public knowledge and awareness regarding oral health.[12]
CONCLUSION
The remaining question is what may be the best way forward for the health of the US population. The goal of equal and accessible healthcare is not easily obtainable. The introduction of dental therapists to the workforce has provided a possible solution to this problem by expanding access to healthcare to affected populations. Some regions have documented benefits from this addition, but disagreements remain among healthcare professionals on whether this is the ethical solution to the problem of oral health disparities. The practice of integrating dental therapists into all regions with oral health care shortages throughout the US comes down to whether licensed dental therapists are competent in rendering quality treatment in underserved areas. Some are content with the addition of dental therapists, while others continue to look for other solutions, such as better dental education on prevention and optimizing access to already established practices.
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[1] Corr, Allison. “What Are Dental Therapists?” The Pew Charitable Trusts, The Pew Charitable Trusts, 9 Oct. 2019, www.pewtrusts.org/en/research-and-analysis/articles/2019/10/09/what-are-dental-therapists.
[2] The Pew Center on the States. “The State of Children’s Dental Health: Making Coverage Matter.” Pew Children’s Dental Campaign, Sept. 2010. https://www.pewtrusts.org/~/media/legacy/uploadedfiles/wwwpewtrustsorg/reports/state_policy/childrensdental50statereport2011pdf.pdf.
[3] Pew Center on the States (2010).
[4] Health Workforce Shortage Areas, Health Resources and Services Administration (HRSA), 31 Mar. 2023, https://data.hrsa.gov/topics/health-workforce/shortage-areas.
[5] David A. Nash, Jay W. Friedman, Kavita R. Mathu-Muju, Peter G. Robinson, Julie Satur, Susan Moffat, Rosemary Kardos, Edward C.M. Lo, Anthony H.H. Wong, Nasruddin Jaafar, Jos van den Heuvel, Prathip Phantumvanit, Eu Oy Chu, Rahul Naidu, Lesley Naidoo, Irvi. “A Review of the Global Literature on Dental Therapists.” Community Dentistry and Oral EpidemiologyVolume 42, Issue 1 p. 1-10, Wiley Library Online, 3 May 2013, https://doi.org/10.1111/cdoe.12052.
[6] Corr (2019).
[7] Urahn, S. and Schuler, A. (2014) Expanding the Dental Team. The Pew Charitable Trust. https://www.pewtrusts.org/-/media/assets/2014/06/27/expanding_dental_case_studies_report.pdf
[8] Corr (2019).
[9] Corr (2019).
[10] Nash, et al. (2013).
[11] White Paper on Increasing Access to and Utilization of Oral Health Care Services, Academy of General Dentistry, July 2008, https://www.agd.org/docs/default-source/advocacy-papers/agd-white-paper-increasing-access-to-and-utilization-of-oral-health-care-services.pdf?sfvrsn=2%20.
[12] Burton L. Edelstein, DDS, MPH. “Examining Whether Dental Therapists Constitute a Disruptive Innovation in US Dentistry.” American Journal of Public Health, American Public Health Association, Oct. 2011, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3222362/
Erosion and Culture: An Examination of Climate Displacement in Coastal Louisiana
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INTRODUCTION
On the Louisiana coast, erosion and flooding threaten the survival of the indigenous villages of Pointe-au-Chien and Isle de Jean Charles. Oil companies have submerged the bayou by cutting canals through the land, causing erosion, saltwater intrusion, and sea level rise.[1] Additionally, the fuel these companies produce contributes to climate change, which causes an even greater rise in sea levels. The presence of the oil industry also hurts the shrimp and fish industries, which are critical to indigenous culture. Eventually, climate change will make the Louisiana coast uninhabitable.[2] Displacement has already begun on Isle de Jean Charles: there were 78 homes on the island in 2002 but only 25 in 2012.[3] Some call it migration, which implies an intentional decision. Displacement reflects the reality that these people are relocating as a last resort. Displacement can also be more than just physical. People living in an environment that is “drastically altered and degraded” can experience the same stress and risks as those who are physically relocated.[4] The coastal tribes (Pointe-au-Chien Indian Tribe and Biloxi-Chitimacha-Choctaw Indians) face an uphill battle in the effort to keep community members safe from flooding without sacrificing the culture that is so tied to this land. However, moving to a place free from climate disasters is not necessarily safer for the community if it destroys the culture; therefore, we need to redefine safety. In this paper, I will address the plans currently underway to solve these problems and explain the steps we need to take to keep these communities safe from flooding while preventing cultural loss.
I. Current Perspectives
There are disagreements among scholars and journalists on how to best approach climate displacement, the forced migration caused by climate change, in Louisiana. Jake Bittle, author of The Great Displacement: Climate Change and the Next American Migration, thinks that displacement is inevitable and that we should not subsidize families living in risky places through affordable flood insurance. Instead, the United States should focus on helping people relocate by making it easier for people in dangerous locations to find and pay for housing in safer places.[5] While the cultural extinction of tribes on the Louisiana coast devastates Bittle, he accepts it. His proposed solutions focus more on protecting people from danger because he thinks cultural extinction will be hard to avoid. He sees a future in which coastal Louisiana is unlivable and such environmental circumstances will force community members to disperse. Others argue that affordable flood insurance near the coast is vital for families who decide to stay put and keep their community together as long as possible. High insurance prices would displace locals regardless of the success of restoration efforts.[6] Many residents agree. They take pride in being adaptable and overcoming challenges. Resilience, the ability to respond to stress and maintain system identity and function, is important to the people living on the Louisiana coast.[7] After Hurricane Katrina, many households have kept only what they need in their home and are ready to rebuild and stay in place after a storm.[8] However, environmental changes are becoming more rapid. Storms and floods will become more frequent and severe until the coast is no longer livable.
II. Approaches
As solutions attempt to balance safety from floods with holding a culture together, it is crucial that indigenous community members are involved in decision making. When governments use cost-benefit analysis to decide on solutions and where to prioritize protection, they often neglect culture and underestimate the downsides of moving inland.[9] Working with native groups to understand their priorities is important. The United States has a history of forced relocation of indigenous groups. The 1830 Indian Removal Act forced five Native American tribes in the Southeast to move to what is now Oklahoma. Isle de Jean Charles is the result of the Biloxi-Chitimacha-Choctaw Indians escaping that move.
Forced removals are a violation of human rights. Indian removal in the 1800s involved death and cruelty, and it was difficult for communities to thrive in a new place after displacement. We need to ensure nothing resembling forced removal occurs again. Migration must happen only if the indigenous communities feel it is best for them.
As long as indigenous communities are empowered to choose their path, the government must play a pivotal role in aiding adaptation and relocation. We need a government agency dedicated to the issue of climate displacement.[10] Currently, most funding comes after a specific disaster such as a hurricane. There is less funding to help communities facing more gradual forms of climate change like rising sea levels and coastal erosion. The Stafford Disaster Relief and Emergency Assistance Act should give the Federal Emergency Management Agency (FEMA) a greater ability to deal with “slow, ongoing climate-induced environmental changes.”[11] The legislation requires a presidential disaster declaration for federal funds to be used toward disaster recovery and hazard mitigation efforts.[12] Much more federal assistance is available for immediate threats than for communities suffering from slow changes. Federal support should put as much effort towards assisting relocation as is put towards rebuilding.
Government-assisted relocation is not without precedent. Franklin D. Roosevelt created the Resettlement Administration, one of the public programs he enacted during the New Deal in the 1930s, which relocated struggling families to neighborhoods planned by the federal government. Agencies can apply the same principles to help families whose neighborhoods are being lost to rising sea levels.
FEMA has started to include the possibility for community relocation in its plans, but the current process has flaws. In August of 2022, the federal government created a Community-Driven Relocation Subcommittee led by FEMA and the U.S. Department of the Interior. The goal of this subcommittee is to connect communities that want to relocate with the resources available to them. The program is voluntary and supports groups that want to move to a safer place or whose habitat has become unlivable. With that said, the government does not always meet the communities’ needs. The Isle de Jean Charles Resettlement Project, for example, chose a new site that “lacked direct access to the water that had sustained the island tribe for generations.”[13] When movement becomes necessary, preventing cultural extinction is difficult. Additionally, some fear that the local government will allow the newly uninhabited land to be used for tourism.[14] The government encouraging a native tribe to move out for the sake of increasing tourism on the coast would show a lack of integrity, but there is no problem if the move is voluntary and the government has no ulterior motives.
The government needs to dedicate resources to helping tribal communities, either by helping them find a way to keep living in their current locations and adapt to the changing landscape or by helping them relocate to a new location. The state of Louisiana is expecting Isle de Jean Charles to be gone by 2050, and Pointe-au-Chien will be underwater not long after that.[15] Whatever these communities choose in the short term, they will eventually need to find a new place to live. The sooner they start planning for that transition, the smoother it will be. Continuously rebuilding after storms puts a strain on our public resources. The more people that live in places susceptible to dangerous hurricanes, the less aid will be available to each family. However, the strain on the system is worth it because of the value of keeping a culture together. Displacement is unavoidable in the long term. The end goal for these communities is to keep their culture alive as they transition to a new space, which is tough due to their connection to the land.
Certain overarching guidelines for climate relocation will give these tribes a better chance of both upholding culture and staying safe from coastal erosion. The fundamental principle is self-determination, meaning that the community can freely develop their culture and make their own decisions about internal governance. It is important that community members lead the relocation process. When they move, indigenous communities need the “right to safe and sanitary housing, potable water, education, and other basic amenities.”[16] Managing movement in a way that listens to the needs of indigenous groups will help minimize cultural loss, but the connection to the specific place makes migration a threat to the culture. Many people living in native tribes on the Louisiana coast have a strong attachment to their village, so resettlement will hurt the community. The tribes have spent years developing skills and knowledge specifically tied to the place they live, such as tailored fishing and shrimping practices.[17] At some point, displacement will become obligatory, and they will lose some history and culture, but collaboration between the government and communities can lessen the downsides of relocation to safer land.
As an alternative to community wide resettlement, the government could also help individual families looking to move to a safer place. For people to move to places less affected by climate change, affordable housing must be available. Tax credits for people starting mortgages in new cities are one way to provide post-disaster aid.[18] More funding for housing vouchers would help people find places to rent in safe locations in Louisiana or other states. Expanding affordable housing in major cities would create an attractive option for people that need to leave the coast. This solution has drawbacks, as a city is a stark difference from a coastal town and could be a culture shock. However, it is still beneficial for coastal residents to have an affordable option if they decide or if environmental conditions force them to move.
CONCLUSION
The government needs to assist households and indigenous communities with combating climate change in their chosen way. For now, the tribes of Pointe-au-Chien and Isles de Jean Charles should choose if they want to adapt to living on the Louisiana coast or move out. In the long term, displacement is inevitable. The government should support indigenous families in finding an affordable place to live somewhere with a temperate environment, protected from rising seas, and access to fresh water.[19] Any program, whether governmental or led by nonprofits, should help communities relocate in a way that allows them to continue traditional practices and keep their culture alive. Also, making plans to adjust to climate change cannot make us forget about serious efforts to reduce emissions and find ways to sequester carbon from the atmosphere to reverse climate change. In sum, coastal erosion and cultural loss in Louisiana is a “wicked problem,” a problem that is complex and has unclear solutions.[20] Families that stay on the coast are vulnerable to floods and destruction, but relocating without losing culture is a nearly insurmountable task. The best way forward is to let the indigenous communities be the guiding voice.
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[1] Patty Ferguson-Bohnee, “The Impacts of Coastal Erosion on Tribal Cultural Heritage,” Forum Journal 29, no. 4 (Summer 2015): 60, muse.jhu.edu/article/587542.
[2] Anya Groner, “When the Place You Live Becomes Unlivable,” The Atlantic, October 13, 2021, https://www.theatlantic.com/culture/archive/2021/10/when-place-you-live-becomes-unlivable/620374/.
[3] Julie Koppel Maldonado et al., “The Impact of Climate Change on Tribal Communities in the US: Displacement, Relocation, and Human Rights,” in Climate Change and Indigenous Peoples in the United States, ed. Julie Koppel Maldonado, Benedict Colombi, and Rajul Pandya (Switzerland: Springer International Publishing, 2014), 98.
[4] Julie Koppel Maldonado, “A Multiple Knowledge Approach for Adaptation to Environmental Change: Lessons Learned from Coastal Louisiana's Tribal Communities,” Journal of Political Ecology 21, no. 1 (2014): 70, https://doi.org/10.2458/v21i1.21125.
[5] Jake Bittle, The Great Displacement: Climate Change and the Next American Migration (New
York: Simon & Schuster, 2023), 282.
[6] Kevin Fox Gotham, “Coastal Restoration as Contested Terrain: Climate Change and the Political Economy of Risk Reduction in Louisiana,” Sociological Forum 31, no. S1 (September 2016): 800, https://doi.org/10.1111/socf.1227.
[7] Fikret Berkes, “Environmental Governance for the Anthropocene? Social-Ecological Systems, Resilience, and Collaborative Learning,” Sustainability 9, no.7 (2017): 5, https://doi.org/10.3390/su9071232.
[8] Jessica R.Z. Simms, “‘Why Would I Live Anyplace Else?’: Resilience, Sense of Place, and Possibilities of Migration in Coastal Louisiana,” Journal of Coastal Research 33, no. 2 (March 2017): 413, http://www.jstor.org/stable/44161446.
[9] Maldonado, “Multiple Knowledge Approach,” 73.
[10] Maldonado et al., “Displacement, Relocation, and Human Rights,” 100.
[11] Maldonado et al., “Displacement, Relocation, and Human Rights,” 101.
[12] Robin Bronen, “Climate-induced Community Relocations: Creating an Adaptive Governance Framework Based in Human Rights Doctrine,” N.Y.U. Review of Law and Social Change 35 (2011): 366.
[13] Bittle, Great Displacement, 133.
[14] Bittle, Great Displacement, 133.
[15] Maldonado et al., “Displacement, Relocation, and Human Rights,” 98.
[16] Maldonado et al., “Displacement, Relocation, and Human Rights,” 103.
[17] Simms, “‘Why Would I Live Anyplace Else?’” 413.
[18] Bittle, Great Displacement, 280.
[19] Bittle, Great Displacement, 274.
[20] Horst W. J. Rittel et al., “Dilemmas in a General Theory of Planning,” Policy Sciences 4 (1973): 155-169, https://doi.org/10.1007/BF01405730
Education and Embodiment: Mapping the Sonic Language of a Prison Museum
No full textThis audio-visual piece examines the sonic repetition and intersection of exhibits, tour programming, and environmental ambience within Eastern State Penitentiary Historic Site in Philadelphia. Through field recordings, sample-based looping, voice-over, and animation, the artist draws on her experience working as a museum educator to question her relationship to - and participation in - the sound culture of the historic space. 
Noticing Patents
Get PDFPatents take the form of public letters that the U.S. Patent and Trademark Office (USPTO) actively disseminates. Whether these documents sufficiently provide the public with notice of the technologies they describe, as well as the proprietary rights that they assert, has been subject to long-standing debate. Many commentators conclude that patents are often filed too early in the research and development cycle, are deliberately drafted in a vague or obtuse manner, or are simply too numerous. As a result, identifying the relevant patent landscape is not just difficult for technology implementers, but possibly undesirable as a matter of innovation policy. Yet prior scholarship has seldom acknowledged current statutory mechanisms to improve the notice function of patents after they issue. This Article endeavors to fill that gap.
Congress has long encouraged intellectual property rights holders to identify their patents on the products they sell. Patent marking has traditionally occurred on physical products or their packaging, although it has been recently extended to Internet-based virtual marking. The marking statute stipulates that patent proprietors that fail to mark face severe remedial restrictions when challenging infringers. Congress has assigned the Food & Drug Administration (FDA) a part in providing patent notice as well. In keeping with federal legislation, the agency maintains two publications, commonly known as the Orange and Purple Books, that act as a patent clearinghouse for approved drugs and licensed biologics.
The role of a patent within the marketplace provides perhaps the most valuable form of notice that that instrument may offer. Yet the marking statute and FDA publications suffer from some apparent flaws. In combination they project a failure to identify all patents that are relevant to the product, favor patent trolls, involve dubious practical workings, promote misleading advertising, and impose punitive sanctions in comparison to the notice requirements of peer intellectual property rights. For its part, the FDA has proven an untutored and unreliable patent publicist for the past four decades.
This Article offers specific suggestions to improve the notice functions of patents after they issue. It calls for the USPTO to develop and populate its own virtual marking database that correlates individual patents with the marketplace. It also encourages the FDA to take further steps to counter abuses of the Orange and Purple Books and to accelerate their patent notice functions. Finally, this Article takes broader lessons from this effort, offering pathways for policymakers to look beyond the patent instrument as they endeavor to improve the patent system’s notice functions
Panoptic Employment: Remote Worker Health Data Under Surveillance
Get PDFRemote workers are subjected to constant and intrusive surveillance by employers and health technology companies. Working from home became commonplace as a result of COVID-19, and increasingly employers use health and location tracking software, as well as webcams and facial recognition, to monitor their employees. This surveillance exacerbates risks of discrimination based on health data and other lifestyle factors that have no bearing on work performance, implicates the privacy rights of family members and roommates, and sharpens the power asymmetry between employers and employees. Particularly as States seek to criminalize women seeking abortions following the Supreme Court’s overturning of Roe v. Wade, the safeguarding of health data on fertility-tracking applications has never been more important.
Given the novelty and rapidity of this transition, state and federal laws fall short of adequately protecting remote workers from incessant surveillance, particularly of their health data. Although several federal laws and agencies appear to address certain aspects of this threat, in practice laws such as HIPAA at the federal level and BIPA and CCPA in Illinois and California, respectively, do not sufficiently regulate the collection of health data from remote workers. In addition to these practical issues, U.S. privacy law generally places undue exclusive emphasis on the individual, relying on notice-and-consent provisions and anonymization. However, the case of remote worker surveillance highlights the deficiencies of this individualized focus. This Note details the prevalence and harm of remote worker surveillance, discusses how the current data privacy legal regime falls short, and offers proposals for strengthening privacy protections for remote workers and their health data