Recent publications
Aims
To test the long‐term efficacy, safety, and impact on quality of life (QoL) of an oral paediatric formulation of 320 μg/mL glycopyrronium in the 36‐week SALIVA (Sialanar plus orAl rehabiLitation against placebo plus oral rehabilitation for chIldren and adolescents with seVere sialorrhoeA and neurodisabilities) trial.
Method
In the initial 12‐week blinded period, 87 children with neurodisabilities and severe sialorrhoea were randomized to 320 μg/mL glycopyrronium versus placebo. In the subsequent 24‐week open‐label study extension, 74 children received 320 μg/mL glycopyrronium (37 continued glycopyrronium, 37 switched from placebo).
Results
The open‐label study extension population included 39 males and 35 females. The median age was 10 years 2 months (quartile 1, quartile 3: 7 years 5 months, 14 years 7 months; range: 3 years 5 months–17 years 8 months). Over 36 weeks, continued 320 μg/mL glycopyrronium resulted in a median 39‐point reduction in Drooling Impact Scale (DIS) score from baseline (quartile 1, quartile 3: −51, −21; p < 0.001), with an 81.1% response rate (DIS improvement ≥ 13.6 points) and a 70.3% good response rate (≥ 28 points). Improvements in the impact of drooling on QoL seen in the blinded period were sustained with continued glycopyrronium. Treatment‐related adverse events occurred most frequently during titration (0–4 weeks: 40.9%; 5–20 weeks: 32.4% in those who switched). Constipation was the most common adverse event.
Interpretation
Long‐term treatment with 320 μg/mL glycopyrronium resulted in significant sustained improvements in drooling and QoL, with fewer adverse events after initial titration and overall good tolerability.
Aim
To investigate the efficacy, safety, and impact on quality of life (QoL) of an oral formulation of 320 μg/mL glycopyrronium designed for children.
Method
A double‐blind, placebo‐controlled SALIVA (Sialanar plus orAl rehabiLitation against placebo plus oral rehabilitation for chIldren and adolescents with seVere sialorrhoeA and neurodisabilities) trial was conducted. Children (3–17 years) with neurodisabilities and severe sialorrhoea (modified Teachers Drooling Scale ≥6) were randomized to 320 μg/mL glycopyrronium or placebo, in addition to non‐pharmacological standard care.
Results
Of 87 participants, 44 were aged 10 years or under and 43 had cerebral palsy. The primary endpoint, change in total Drooling Impact Scale (DIS) score from baseline to day 84, was significantly greater (improved) with 320 μg/mL glycopyrronium versus placebo (median [quartile 1, quartile 3] –29.5 [−44.5, 0] vs −1 [−16, 5]; p < 0.001), an effect also observed at day 28 (median − 25 vs −2; p < 0.01). Significant reduction in bibs/clothes used per day was seen with glycopyrronium versus placebo at day 84 (median − 2 vs 0; p < 0.01). Glycopyrronium significantly improved DIS items 9 and 10 related to the extent that drooling affects the child's and family's life (p ≤ 0.03). Adverse events were reported by 77.3% and 69.8% of children with glycopyrronium and placebo respectively; the most common treatment‐related adverse event was constipation (20.5% and 16.3%).
Interpretation
The formulation of 320 μg/mL glycopyrronium significantly improved drooling and reduced its impact on QoL, with good tolerability in children with neurodisabilities.
What this paper adds
The formulation of 320 μg/mL glycopyrronium significantly improved Drooling Impact Scale score versus placebo at day 84.
The formulation reduced the impact of drooling on the child's and family's quality of life.
There were no safety or tolerability concerns with this specific formulation.
Introduction: This study investigated the accessibility and usability of online job applications by individuals with visual impairments who use screen readers. Method: Three blind, experienced screen reader users on the research team attempted to complete online job applications from 30 randomly selected Fortune 500 companies, with 90 application trials attempted. Each tester used a different screen reader and browser combination. Results: The testers experienced significant barriers to completing the online job applications: 50 of 90 (55.6%) attempts were successful, but 23 of the 30 (76.7%) websites had critical issues that prevented at least one tester from completing the application. Testers found 694 accessibility issues and gave an average ease-of-use rating of 3.60 (SD = 1.05) out of 5 for the job application websites. Twenty-six of the job application websites were created by eight job application software vendors, with significant variation in accessibility across different applications using the same vendor. Discussion: The accessibility and usability issues identified with the majority of online job applications evaluated present an unnecessary barrier to employment for screen reader users. While the 55.6% success rate found in this study is considerably higher compared to previous research, only 23.3% of the job application websites were accessible to all three screen readers. Implications: Job application software vendors and companies that create their own online job applications should take a Universal Design approach by following the Web Content Accessibility Guidelines (WCAG) and implementing recommended solutions to increase the accessibility of their applications. Software vendors are encouraged to only offer accessible options for creating online job applications, such that companies would not be able to create an inaccessible form.
Objective: Jurors often see both premortem photographs of female murder victims before death and postmortem photographs after death. Postmortem photographs are often probative but might prejudicially heighten jurors’ other-condemning emotions, such as anger and disgust. Premortem photographs are often not probative and might prejudicially heighten jurors’ other-suffering emotions, such as sympathy and empathy. We examined how victim race changes the impact of pre- and postmortem photographs on participants’ moral emotions and, in turn, their verdicts. Hypotheses: We hypothesized that seeing postmortem (vs. no) photographs would increase convictions through other-condemning emotions for White, but not Latina or Black, victims. We also hypothesized that seeing both pre- and postmortem (vs. only postmortem) photographs would further increase convictions through other-suffering emotions, again for White, but not Latina or Black, female victims. Method: White participants (N = 1,261) watched a murder trial video. We manipulated the victim’s race (White, Black, or Latina) and whether participants saw no victim photographs, premortem photographs of a female victim, postmortem photographs of a female victim, or both pre- and postmortem photographs. Participants reported the emotions they felt during the trial and chose a verdict. Results: Seeing postmortem (vs. no) victim photographs increased White participants’ guilty verdicts through other-condemning emotions when the female victim was White or Latina but not when she was Black. Seeing the combination of pre- and postmortem photographs increased White participants’ convictions through other-suffering emotions when the victim was a White woman but not when she was Latina or Black. Conclusions: Attorneys and judges should consider that jurors’ emotional reactions to victim photographs are felt selectively depending on the victim’s race and could exacerbate racial biases in jurors’ judgments.
Introduction: Recreational cannabis use has been on the rise among young adults in recent years. Dependent cannabis use disorder (CUD) has been linked to various cardiac events, but its impact on young adults in the absence of concomitant substance abuse remains unclear. We aim to analyze the nationwide trends in hospitalizations for major adverse cardiac and cerebrovascular events (MACCE) in this specific population.
Methods: We identified hospitalized young adults (18-44 years) using National Inpatient Sample (2016 -2019), excluding those with concomitant substance abuse (tobacco, alcohol, and cocaine). They were divided into CUD+ and CUD- groups. We assessed the trends in hospitalizations for MACCE, including all-cause mortality (ACM), acute myocardial infarction (AMI), cardiac arrest (CA), and acute ischemic stroke (AIS), using ICD 10 codes.
Results: Of 27.4 million hospitalizations among young adults without other substance abuse, 4.2% (1.1 million) had CUD. The rates of hospitalizations for MACCE (1.71% vs. 1.35%), AMI (0.86% vs. 0.54%), CA (0.27% vs. 0.24%), and AIS (0.27 vs. 0.24%), were higher in the CUD+ group compared to the CUD- group (P < 0.001). However, the rate of ACM hospitalizations (0.30% vs. 0.44%) were lower in the CUD+ group. From 2016 to 2019, the CUD+ group exhibited a relative increase of 5% in MACCE and 20% in AMI hospitalizations, which were lower compared to the respective increases of 22% and 36% in the CUD- group (Ptrend<0.05). Additionally, there was a relative decrease of 13% in ACM hospitalizations among the CUD+ group, whereas the CUD- group experienced a relative increase of 10% (Ptrend<0.05).
Conclusion: The CUD+ group had higher rates of MACCE admissions, but the growing trends were more pronounced in the CUD- group through the years. Interestingly, the CUD+ group exhibited lower rates of ACM compared to the CUD- group. Further research is needed to better understand this complex relationship.
Background: Cancer survivors are at an increased risk of cardiovascular disease due to various treatment modalities, and COVID-19 can further complicate their cardiovascular health. Therefore, we aimed to study the burden of major adverse cardiac and cerebrovascular events (MACCE) among cancer survivors hospitalized with COVID-19 and associated sociodemographic disparities.
Methods: We analyzed the National Inpatient Sample Database (2020) to identify COVID-19 related adult (≥18 years old) hospitalizations among cancer survivors and associated MACCE (all-cause mortality, acute myocardial infarction, cardiac arrest, and stroke) using ICD-10 codes. A multivariable regression analysis of MACCE based on disparities like age, sex, race, and household income was done.
Results: Of 112,270 COVID-19 related admissions in cancer survivors (51.8% males, 68% white, 14.7% black, and 9.8% Hispanic), 17.8% (n = 19935) patients experienced in-hospital MACCE. All MACCE events were higher among patients aged ≥ 65 years and 45-64 years compared with the 18-44 year age group, with ORs of 5.61 (95% CI: 3.43-9.19) and 2.30 (95% CI: 1.41-3.76) respectively. Males have higher odds of MACCE than females (OR 1.33, 95% CI: 1.23-1.43). The odds of MACCE were higher in Hispanics (OR 1.23, 95% CI: 1.08-1.39) and Native Americans (OR 1.71, 95% CI: 1.08-2.73) compared to Whites. Lowest income quartile patients had a higher MACCE than highest-income quartile patients (OR 1.13, 95% CI: 1.00-1.28). For all the above-mentioned ORs, the level of significance was p<0.05.
Conclusion: Among COVID-19 related admissions in cancer survivors, elderly patients, males, Hispanics, Native Americans, and those in the lowest income quartile are prone to have increased MACCE. Factors like age, sex, race, and socioeconomic status seem to play a role in MACCE incidence. Understanding these factors may help emphasize improving patient care, address health equity issues, and inform healthcare policymakers.
Systemic lupus erythematosus (SLE) is a chronic autoimmune disease. The complex relationships between race and ethnicity and social determinants of health (SDOH) in influencing SLE and its course are increasingly appreciated. Multiple SDOH have been strongly associated with lupus incidence and outcomes and contribute to health disparities in lupus. Measures of socioeconomic status, including economic instability, poverty, unemployment, and food insecurity, as well as features of the neighborhood and built environment, including lack of safe and affordable housing, crime, stress, racial segregation, and discrimination, are associated with race and ethnicity in the US and are risk factors for poor outcomes in lupus. In this scientific statement, we aimed to summarize current evidence on the role of SDOH in relation to racial and ethnic disparities in SLE and SLE outcomes, primarily as experienced in the U.S. Lupus Foundation of America's Health Disparities Advisory Panel, comprising 10 health disparity experts, including academic researchers and patients, who met 12 times over the course of 18 months in assembling and reviewing the data for this study. Sources included articles published from 2011 to 2023 in PubMed, Centers for Disease Control and Prevention data, and bibliographies and recommendations. Search terms included lupus, race, ethnicity, and SDOH domains. Data were extracted and synthesized into this scientific statement. Poorer neighborhoods correlate with increased damage, reduced care, and stress-induced lupus flares. Large disparities in health care affordability, accessibility, and acceptability exist in the US, varying by region, insurance status, and racial and minority groups. Preliminary interventions targeted social support, depression, and shared-decision-making, but more research and intervention implementation and evaluation are needed. Disparities in lupus across racial and ethnic groups in the US are driven by SDOH, some of which are more easily remediable than others. A multidimensional and multidisciplinary approach involving various stakeholder groups is needed to address these complex challenges, address these diminish disparities, and improve outcomes.
Following the life of a charismatic woman committed to reform, this book provides an introduction to the politics that dominated the early decades of the twentieth century, ideas that are the basis for much of today's progressive thought. As one of the “new women” who came of age during the Progressive era, Mary Field Parton, a close friend of Clarence Darrow, pursued social justice as a settlement house worker and as a leading writer on labor organizing, transforming pragmatic principles into action. The book shows how, following the upheavals of the late nineteenth and early twentieth centuries, liberals such as Mary Field Parton turned to pragmatism, hoping to generate greater social awareness from constructions of values rooted in personal experiences instead of philosophical or religious truths. The book reveals how Mary Field Parton sought to expand her rights as a woman while nonetheless denigrating rights as artificial legal impediments to social progress. The issues she faced and the options she considered find important currency in the political divisions confronting Americans a century later.
After its illegal occupation and annexation of Crimea in 2014 and continued military support for separatists in the Donbas, Russia escalated its war against Ukraine in February 2022 with direct ground attacks by Russian military forces on Ukraine's eastern, northern and southern borders, a blockade of Ukraine's coast and aerial attacks throughout the country. Millions of Ukrainians fled, including thousands of international students residing in Ukraine. Countries around the world responded to the resulting refugee crisis with varying policies. Many of Ukraine's neighboring countries enacted model immigration laws and developed various support schemes. Some governments, such as in Poland and the European Union (EU), immediately granted Ukrainian refugees the right to live, work, obtain access to education and receive benefits comparable to those to which their own citizens are entitled and created a generous and protective immigration model that attempts to prevent human trafficking and other forms of exploitation. Other countries geographically removed from the conflict used different models, including some with a private sponsorship component that, despite the best of intentions, may in retrospect be exposing refugees to the dangers of human trafficking and exploitation.
Ukrainian refugees – also referred to as internally displaced persons (IDPs) if still remaining in Ukraine or as parolees if attempting to enter the United States (US) – seeking entry into the United Kingdom (UK) or US are required to find a private sponsor who accepts financial responsibility for them during their stay in their host country. In the UK, private sponsors are paid a monthly stipend, while in the US, private sponsors are not paid but actually contract with the US government to be financially responsible for the persons whom they are sponsoring. By contrast, Ukraine's neighbors, including Poland, with notably less economic and fiscal resources than either the UK or the US, have no private sponsorship requirement.
Since the collapse of the Soviet Union in 1991, Ukrainians have been a vulnerable population subjected to human trafficking – a situation exacerbated by Russia's current war against their country. In the first weeks of the war, credible firsthand and in-real-time reports by Ukrainian- and Russian-speaking attorneys and human rights advocates quickly emerged that describe Ukrainian women refugees utilizing online dating platforms, social media sites and online chat rooms to find private sponsors in the UK and the US. While this government policy requiring private sponsorship appeared to be a prudent means for vetting refugees, burden-sharing and shifting the hosting costs away from taxpayers and governments' ledgers, the policy has unintended consequences. Refugee and human trafficking experts state that the private sponsorship requirement compels Ukrainian refugees, 90-plus percent of whom are women and children, to 'market' themselves – often online – to potential private sponsors in the UK and US, thereby exposing themselves to human traffickers. This policy has potentially – albeit unintentionally – increased, exacerbated and even facilitated the human trafficking of Ukrainian refugees, an already vulnerable population experiencing a precariously heightened risk for physical, sexual and economic exploitation due to their growing desperation for physical safety.
This article, written from the practitioners' perspective, discusses how the private sponsorship requirement for Ukrainian refugees is potentially increasing the risk of human trafficking for an already at-risk population, unnecessarily jeopardizing their safety and further stripping them of their human dignity. The unintended consequences of private sponsorship demonstrate that such a requirement in a wartime scenario is ill-conceived, inappropriate and dangerous public policy and, dare it be said, potentially exploitative.
Acute hepatic porphyria (AHP) is a group of rare genetic diseases of heme biosynthesis resulting in severe neurovisceral attacks and chronic complications that negatively impact patients' well‐being. This study evaluated the impacts of AHP on patients' physical and emotional health from a global perspective. Adult patients from the United States, Italy, Spain, Australia, Mexico, and Brazil with AHP with >1 porphyria attack within the past 2 years or receiving intravenous hemin and/or glucose for attack prevention completed an online survey assessing demographics, health characteristics, and patient‐reported outcomes. Results were analyzed collectively and by patient subgroups. Ninety‐two patients with AHP across the six countries completed the survey. More than 70% of patients reported that their physical, emotional, and financial health was fair or poor. Among patients who reported pain, fatigue, and muscle weakness, 94.3%, 95.6%, and 91.4%, respectively, reported that these symptoms limited daily activities. Moderate to severe depression was present in 58.7% of patients, and moderate to severe anxiety in 48.9% of patients. Of the 47% of patients who were employed, 36.8% reported loss in productivity while at work. Among patients, 85.9% reported that they had to change or modify goals that were important to them because of AHP. Aside from differences in healthcare utilization and pain severity, scores did not significantly vary with attack rate or use of hemin or glucose prophylactic treatments. AHP substantially impacts patients' physical and emotional well‐being, regardless of hemin or glucose prophylactic treatment or frequency of attacks. This multinational study demonstrates that there is substantial disease burden for patients with AHP, even among those experiencing sporadic attacks or using prophylactic treatment.
Chapter 4 shows how the October 2019 killing of ISIS leader Abu Bakr al-Baghdadi became a platform for President Trump’s visual and verbal consolidations of necropolitical law. Announcing the killing at a press conference held at the White House Diplomatic Reception Room, Trump positioned himself in front of a portrait of America’s first president, George Washington, visually asserting Trump’s lineage in an always already necropolitical state, built, as it is, on the racialized pillars of territorial appropriation, genocide, and slavery. With the many flags of the US armed forces flanking Trump like an honor guard, the visuals of Trump’s announcement encode the two bodies of president/commander-in-chief, foregrounding the military as a key actor in the state’s implementation of necropolitical law. Chapter 4 shows how Trump used the occasion, first, to deepen the necropolitical separations animating necropolitical law and, second, to stage himself as the White, male, militarized hero central to spectacles of imperialism. Chapter 4 demonstrates how normalizing the necropolitics of imperialism past and present fosters the discounting of life legitimized by necropolitical law.
Chapter 7 concludes this book with an analysis of two key speeches delivered by President Biden on the US withdrawal from Afghanistan. Biden’s speeches served, yet again, to co-constitute nation/empire, the familial and the political, deploying these co-constitutions to authorize and legitimize American imperial violence. In the process, Biden re-articulated to necropolitical law, relying on political myth to ground his narratives of authority, legitimacy, and community. With myth doing the work of law, imperial violence directed at distant, racialized Others reconstituted America as a community of power
Chapter 2 demonstrates how the 2001 Patriot Act is necropolitical. As legislation, the Patriot Act takes on the authorizing, legitimizing resonances of the state. Debated and passed through Congress and the Senate, the Act emerges from processes of domestic legislation to enact this law’s global reach, in part through UN Security Council Resolutions. Additionally, the opening lines of the Patriot Act legislate necropolitical law’s planetary jurisdiction: the Act’s purpose is “[t]o deter and punish terrorist acts in the United States and around the world.” Necropolitical law’s dynamics of deception are immediately apparent in the naming of the Patriot Act, a naming that imports spectacle, the closures of meanings for “patriot” in war contexts, as well as the compound meanings of patriot as a peculiarly American keyword. The Patriot Act shows how legal illegibility is part of necropolitical law’s deception, operating through law as publicity to undo law as public thing. In 2022, we find ourselves in legal landscapes still conditioned by the Act. Chapter 2 traces the Patriot Act’s role in normalizing and consolidating necropolitical law’s planetary jurisdiction for the discounting of life in the unending long War on Terror.
Chapter 3 analyzes President Obama’s announcement on the killing of bin Laden to reveal the way discounting life is authorized and legitimized through extrajudicial, extraterritorial killing. Specifically, Obama’s celebratory narrative of the killing as a nation-healing, nation-securing achievement codes vengeance as “justice,” normalizes US imperialism, implicitly justifies “collateral damage,” and remakes the parameters of legitimate state conduct in relation to terrorism. Attending to how Obama’s announcement used image, narrative, political myth, and sound to manufacture necropolitical law’s authority, legitimacy, norms, and community, Chapter 3 argues that we are interpellated by the official announcement, not as liberal legality’s empowered citizenry but as docile spectator-subjects. Chapter 3 also shows how the announcement, in avoiding the category “law,” enables a lawyer-president-commander-in-chief to invest the category “justice” with a range of meanings that contradict liberal legality, in that they invite us, as subjects, to acquiesce in state secrecy and in necropolitical law’s extraterritorial, extrajudicial violence.
Chapter 5 analyzes Eye in the Sky, a 2016 film on drone warfare, to illuminate popular culture’s role in scripting us into being as spectator-consumers while legitimizing the counterterror state’s discounting of life through necropolitical law. The gripping plot, stellar performances, and dazzling displays of technology distract us from, first, the de-democratizing and dehumanizing concealments and erasures that accompany drone warfare and, second, the remaking of lawful authority through a dramatization of the (highly contested) principle of international law known as “the responsibility to protect.” In the process, the film renders visible a particular set of actors, narratives, and questions, while concealing and erasing others, thereby legitimizing drone warfare and valorizing its actors, institutions, practices, and technologies. As text, Eye in the Sky is an instance of the “cultural sensibility … in which killing the enemy of the state is an extension of play” (Mbembe 2019: 73). Given the official secrecy accompanying drone warfare and the film’s convincing incorporation of “fact” into its “fiction,” Eye in the Sky amounts to a compelling representation of the necessity of drone warfare as enacted by lawful military actors with the aim of securing civilians worldwide.
Chapter 6 analyzes the April 2017 deployment in Afghanistan of the US military’s most powerful nonnuclear weapon, the Massive Air Ordinance Blast (MOAB). The bombing, the secrecy surrounding it, and the shock-and-awe media celebrations in the aftermath are all part of the cultivation of global audiences as spectator-consumers fascinated with the annihilatory killing technologies unleased by contemporary US militarized imperialism, which fuel necropolitical law’s discounting of life. Necropolitically, the MOAB strike illustrates “innovations in the technology of murder … [that] aim at disposing of a large number of victims in a relatively short span of time” (Mbembe 2003: 19).
Extrajudicial, extraterritorial killings of War on Terror adversaries by the US state have become the new normal. Alongside targeted individuals, unnamed and uncounted others are maimed and killed. Despite the absence of law's conventional sites, processes, and actors, the US state celebrates these killings as the realization of 'justice.' Meanwhile, images, narrative, and affect do the work of law; authorizing and legitimizing the discounting of some lives so that others – implicitly, American nationals – may live. How then, as we live through this unending, globalized war, are we to make sense of law in relation to the valuing of life? Adopting an interdisciplinary approach to law to excavate the workings of necropolitical law, and interrogating the US state's justifications for the project of counterterror, this book's temporal arc, the long War on Terror, illuminates the profound continuities and many guises for racialized, imperial violence informing the contemporary discounting of life.
Chapter 1 applies Mbembe’s concept of necropolitics to define necropolitical law as the norms, practices, and relations of enmity that justify and legitimize discounting life through killing, as well as through the diminishing of socially and politically empowered life. Mapping the co-constitutions of racialized discounted lives within the domestic terrain of the United States, as well as in global sites of the long War on Terror, the chapter’s provocation is that law – notions of authority, legitimacy, and community – is at work in effecting the nationally and globally discounted lives of the long War on Terror. Chapter 1 also supplies the contours for the book’s methodology and epistemology: law as culture; an interpretive sociolegal reading for law attentive to law’s archive and law’s violence; a normative commitment to rule of law’s scrutiny and restraint of power; and a suspicion of the roles of spectacle, affect, and publicity in displacing rule-of-law’s commitments to power’s accountability and to law as public thing.
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