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It is difficult to know exactly how many coverage denials there are because the American health care system is notoriously fragmented. This chapter introduces a novel survey of 1,340 US adults, finding that 36 percent of respondents have been denied at least once, and typically experience multiple denials. Those in private health insurance experience denials to the greatest degree, which is consistent with private insurers’ cost containment objectives. Health care can be denied for any number of reasons, such as the lack of medical necessity, the absence of a required prior authorization, or an assessment that the care is experimental or investigational. Combining survey and interview evidence, the chapter highlights the destabilizing impact that denials – whether pre-treatment (as with prior authorization) or post-treatment (as with emergency care) can have on patients, whose trust in the health insurance system can be shaken. While prior authorization and other coverage denials can constitute important ways to guard against overtreatment in the American health care system, this chapter presents new evidence that managed care tools may overcorrect, instead denying appropriate care.
Public policies contribute to structural racism and health inequities. To dismantle structural racism and advance health equity, methods aligning scientific evidence, community priorities, and political will are needed to implement equity-focused interventions. This study combined community-based participatory research and legal epidemiology methods to inform local policy in East Point, Georgia. The community informed a comprehensive policy approach to address social determinants of health (SDOH) and advance health equity and identified East Point’s Comprehensive Plan Update as an opportunity to advance health equity through policy. Key findings informed a legal epidemiology study to assess variation in including equity and health equity in comprehensive plans across 32 jurisdictions. Limited adoption of equity and health equity provisions were found, revealing opportunities to inform the East Point policymaking process. Research findings were summarized and disseminated to the community and policymakers. In 2023, East Point adopted equity, health, and health equity into its comprehensive plan for the first time. This case study demonstrates that collaborative, multi-sector, community-centered approaches can support policy interventions that address historical race-based, health-harming policies, and thereby dismantle structural racism. Inclusion of health equity in East Point’s comprehensive plan provides a foundation for future implementation of policies that address SDOH and health inequities.
Dr. C. Norman Coleman’s impact is difficult to measure overall, even if one focuses only on his work as NCI’s Radiation Research Program (RRP) leader. His laboratory work spanned immune-oncology and radiation therapy, RNA biology, normal tissue and tumor tissue radiobiology, and the development of tissue chips for use in radiation biology research. His programmatic leadership helped the RRP develop health equity programs addressing Native American access to optimal cancer care, evaluation of hadron therapy biology, radiation biology, reproducibility and rigor, foundational molecular biology of the tumor and normal tissue caused by radiation therapy dynamically, and global health and security issues. While doing all these things, he found time to mentor countless people in the field, many now leaders, and to read and discuss science across disciplines. He was a dedicated, caring, kind scientist who truly wanted to help and improve the world for others.
Amid growing interest in the integration of health and social care to improve outcomes, communities across the United States have explored development of Community Information Exchanges (CIEs). A CIE is a community governed infrastructure that enables critical health and social information to be responsibly shared among partner organizations in support of holistic coordination of care. The development and use of a CIE give rise to a host of legal and policy challenges. Use and disclosure of data through a CIE are governed by a patchwork of different legal requirements, at times distinct and at times overlapping. Development of a legal framework for a CIE requires attention to clearly articulated data flows, detailed use cases, strong legal agreements and policy considerations. CIEs typically rely on an individual’s express consent to share their information, requiring careful evaluation of applicable laws and regulations and promotion of community trust and equity. And because many participants in a CIE are HIPAA covered entities, functions of the CIE must fit within HIPAA’s regulatory framework. This article examines in depth two components of a sound legal framework—consent models and HIPAA compliance—identifying considerations and lessons learned to support lawful and ethical information sharing through a CIE.
For more than a century, US courts generally deferred to public health authorities, recognizing their expertise and the necessity of swift, science-based action to protect population health. This deference supported legal interventions that substantially increased life expectancy, reduced morbidity, and advanced health equity. In recent years, however, courts — particularly the Supreme Court — have retreated from this approach. Specifically, Supreme Court–driven doctrinal shifts favoring free exercise challenges, limiting deference to administrative agencies, and undermining equal protection have eroded public health authority and constrained governments’ capacity to protect health and improve equity. Drawing on an empirical review of 30 lawsuits filed between January 2024 and May 2025 challenging governmental and institutional health equity initiatives, the paper demonstrates that the majority of these cases resulted in the invalidation or abandonment of equity-focused policies. These findings illustrate how contemporary judicial rulings are limiting governments’ and institutions’ authority and ability to safeguard health, particularly the health of our most vulnerable and marginalized populations. The paper concludes with a call to action: a coordinated public health strategy to build and sustain a jurisprudence that supports the fair, effective, and evidence-based exercise of public health authority.
Despite increasing efforts to promote and support breastfeeding, the United States continues to have some of the lowest exclusive and sustained breastfeeding rates globally. Foreign-born immigrants and refugees specifically have been reported to have high initiation but low exclusive breastfeeding (EBF) rates. This scoping review aims to explore what is known about strategies to support breastfeeding among foreign-born mothers in the United States using the Arksey & O’Malley framework for scoping reviews and PRISMA-ScR (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews). Six databases were searched using a comprehensive search strategy and 2103 articles were identified, of which 31 met eligibility criteria and discussed 33 specific breastfeeding interventions. The articles describe a range of interventions, including breastfeeding promotion and education (n = 30), hands-on breastfeeding support (n = 9), material support like giving breastfeeding supplies and food (n = 16), social support (n = 18) and social marketing campaigns (n = 1) to promote community support for breastfeeding. Common strategies for implementing these interventions include individual counselling (n = 21), group breastfeeding education (n = 17), informational materials (n = 12) and family support promotion (n = 11). In total, 87·3% of the immigrant mothers targeted by these breastfeeding support interventions were Hispanic, and 4·5% and 7·0% were mothers of African and Asian descent, respectively. This study reveals limited data and key gaps in efforts to preserve the culture of breastfeeding and promote EBF among multicultural immigrant and refugee families, particularly non-Hispanic groups. Addressing these gaps will improve optimal infant feeding practices among foreign-born mothers in the United States and, consequently, maternal and infant health outcomes.
Guideline development handbooks outline the methodology that authoring organizations use to create public health and clinical practice guidelines (CPGs). We created an Equity Assessment Tool (EquAT) for guideline development handbooks to identify areas of improvement and foster conversations.
Methods
Sequential phases lead to tool development and face/content validation in this mixed-methods study. In phase 1, we reviewed the literature to generate a list of “essential elements” or tasks that are part of guideline development methodology, mapped “essential elements” with relevant equity concepts, and drafted our tool for use in reviewing guideline development handbooks. In phase 2, we surveyed experts for feedback on “essential elements” and explicit language for assessing equity within the tool and refined items. We piloted and finalized the tool based on feedback.
Results
We identified 18 essential elements within five domains of guideline development and created a draft EquAT. Twenty of 25 invited experts responded to the online survey for feedback on the tool. Most experts provided limited feedback, and the most common suggestion was adding clarifying language to the existing tool criteria for assessing equity. Ten experts participated in pilot testing the revised tool. We found a diversity of scores, and potential reasons might be due to the complexity of the tool, differences in equity frameworks, and a variety of expertise. We incorporated their feedback and finalized the tool.
Conclusions
We developed and validated the EquAT, a tool to foster discussion among assessors about the extent of health equity considerations in guideline development handbooks.
Community-based participatory research (CBPR) must be rooted in anti-oppressive practices that promote equity, power-sharing, and community autonomy, ultimately contributing to the dismantling of systemic racism and the advancement of health equity. Social work leadership and practice are prime locations to incorporate and support CBPR as a mechanism to strengthen processes, intervention, policy creation, and community strategies.
Community engagement that emphasizes shared leadership is essential in clinical and translational science, and language, naming, and framing have the potential to shape power dynamics. This study explored how renaming and restructuring a Community Advisory Board (CAB) into a Community Leadership Board (CLB) could strengthen a trauma-informed network of care (TINoC) by elevating community power, cultural responsiveness, and equitable participation.
Methods:
Guided by the Trauma and Resilience Informed Research Principles and Practice(TRIRPP) framework, we established a paid CLB in Yolo County, California, composed of six individuals who identified as members of groups underrepresented in science. We reviewed timesheets and TINoC products and conducted an inductive thematic analysis of meeting minutes to determine the CLB’s main areas of influence.
Results:
The CLB met 25 times over two years, provided iterative feedback on more than a dozen educational materials, clinical workflows, trauma-informed trainings, and communication strategies, and co-presented at community meetings. Eight recurring areas of influence were identified: trauma-informed ACE screening, accessibility, workflow feasibility, community- and patient-centered feedback, health communication, participant compensation, engagement, and post-screening navigation. CLB members highlighted gaps not identified by the academic and community members of the TINoC, including translation accuracy, time allowed for ACE screening, and ensuring voluntary patient participation.
Conclusions:
Renaming the CLB as a “leadership” body signaled a shift in accountability, deepened engagement, and underscored how naming practices can drive more equitable translational research. Virtual-only meetings potentially limited the representativeness of the CLB; however, results suggest naming is a critical component of trauma-informed community-engaged research(CEnR).
The growing use of glucagon-like peptide-1 (GLP-1) receptor agonists and dual GIP/GLP-1 agonists has intensified debate over the role of pharmacotherapy in addressing obesity. While these drugs can support short-term weight loss, access remains limited, costly and unequal across health systems. Weight regain after cessation and recent price increases, such as for tirzepatide in the United Kingdom, underscore the fragility and inequity of drug-focused approaches. Reliance on medication risks diverts attention from structural drivers of obesity, including the widespread availability, marketing and placement of ultra-processed and high-fat, salt or sugar products and limited access to healthy, minimally processed foods. Population-level action, including mandatory reformulation, marketing restrictions, improved affordability and expanded access to nutritious foods, is essential. Medications may support individuals, but only comprehensive food-system reform can sustainably reduce obesity and diet-related disease.
Arturo González was a thirty-eight-year-old man who presented to our hospital during the Delta variant surge with COVID-related pneumonia that badly damaged his lungs. He was cannulated for extracorporeal membrane oxygenation (ECMO) upon admission; he had been on ECMO for seventy days and was awake and alert when Ethics was consulted. Due to multiple marginalized identities—he was an undocumented immigrant, uninsured, and had limited social support—Arturo did not have access to a lung transplant and was dependent on ECMO for survival. In the face of mounting critical care resource scarcity, Arturo’s intensivists disagreed about whether to continue ECMO indefinitely or to explore discussions about withdrawing support. In this book chapter, we discuss our role as ethics consultants balancing the organizational duty to justly steward scarce resources with the professional duty to this vulnerable patient: setting treatment boundaries while collaborating with Arturo on a treatment plan within these boundaries. We also discuss our role in addressing the care team’s moral distress at the most haunting aspect of this case: that Arturo’s social position limited his access to a lifesaving transplant.
The World Health Organization recognizes disability as part of being human. The fact that people with PICS are a part of a global disabled population at high risk of disparities due to disability itself is underrecognized.To better explore PICS as a subgroup within a larger disabled community, this chapter reviews international consensus on human rights and disability; the difference between equality and equity; the Biomedical and Social Models of Disability; application of the Social Model of Disability to the lived experiences of people with PICS; and practical strategies to make care more just and inclusive for people with PICS based on strategies that have been successful for other communities with disabilities.
Patients with non-English language preference (NELP) face significant barriers to safe and effective communication in palliative and supportive care. These barriers compromise quality, delay care, and heighten the risk of unmet psychosocial needs, particularly when compounded by health literacy concerns and limited access to translated resources.
Methods
We describe two Spanish-speaking patients with advanced cancer whose inpatient and outpatient supportive care was complicated by language barriers, leading to communication gaps, including symptom misinterpretation and inadequate family discharge education. These factors contributed to significant distress and safety risks.
Results
Interdisciplinary interventions, including professional interpreter use, bilingual supportive care psychology, teach-back education, medication relabeling in Spanish, and culturally tailored communication, helped restore trust, alleviate suffering, and align care with patient and family values. In one case, a lack of validated Spanish versions of the Edmonton Symptom Assessment System within the electronic medical record (EMR) hindered symptom self-reporting and safety. Following multiple requests, the EMR team initiated development of a Spanish-language template to facilitate future integration.
Significance of the results
Structural gaps in language accessibility compound distress, reduce autonomy, and threaten safety. These cases underscore that interpreter services alone are insufficient. Integrating validated multilingual tools into EMRs, standardizing translated discharge instructions, and expanding access to in-person interpreters are critical steps toward equitable care. Institutionalizing linguistically responsive systems is essential for ensuring safety, equity, and dignity in palliative care for patients with NELP.
This study investigates the associations between social determinants of health (SDOH) and hypertension prevalence across Wisconsin communities, with particular attention to food environments, economic factors, and transportation patterns. Using data from the 2019–2020 Wisconsin State Inpatient Database (387,047 patients) and the 2020 AHRQ SDOH database, we employed spatial analysis and logistic regression models to examine relationships between hypertension prevalence and neighbourhood characteristics across 597 ZIP codes. Lower-income areas exhibited significantly higher hypertension prevalence (EE = 1.233, 95% CI: 1.128–1.347 for incomes under $14,999), neighbourhoods with greater food resource density showed protective associations (EE = 0.549, 95% CI: 0.474–0.636 for supermarket access). Active transportation patterns were associated with lower hypertension rates (EE = 0.879, 95% CI: 0.829–0.933 for walking). We observed a ‘Hispanic paradox’ in Milwaukee County, where Hispanic populations demonstrated lower hypertension prevalence despite socioeconomic disadvantages, whereas African American populations with similar disadvantages exhibited higher prevalence. Our proposed ‘Food Environment Synergy Model’ helps frame these findings by conceptualising food environments through three interacting dimensions: physical access, economic accessibility, and cultural dietary patterns. This integrated approach highlights how these dimensions collectively relate to unique risk and resilience profiles within communities, challenging conventional binary classifications of ‘food deserts’ versus ‘food secure’ areas. These findings indicate that addressing food access disparities, promoting walkable neighbourhoods, and preserving beneficial cultural dietary traditions may be related to lower hypertension prevalence and advance health equity in diverse communities. However, the analysis is cross-sectional, causality cannot be inferred; further longitudinal studies are needed to establish causal relationships.
Reducing health inequalities and improving health equity have become pressing priorities for health technology assessment (HTA) bodies and healthcare payers globally, particularly in light of the COVID-19 pandemic and its disproportionate impact on disadvantaged groups. Equity considerations are now being embedded across strategic frameworks and HTA processes in countries such as the UK, Canada, and Australia. Examples include NICE’s Core20PLUS5 initiative and PBAC’s policy shift allowing broader prescribing access to address care disparities. However, systematically incorporating quantitative equity measures into HTA presents significant challenges, given the diversity of equity subgroups and varying national contexts.
Methods
At the 2024 CDA-AMC Symposium, we convened stakeholders to discuss the challenges and opportunities for integrating equity into HTA.
Results
Key insights included ICER’s framework for embedding equity across the HTA lifecycle and NICE’s evolving application of Distributional Cost-Effectiveness Analysis (DCEA), as demonstrated in the appraisal of exagamglogene autotemcel for beta-thalassemia. DCEA, while increasingly recognized, requires robust real-world data and clearer guidance on trade-offs between equity and efficiency. Manufacturers are aligning equity goals with ESG priorities but seek greater clarity from HTA bodies on how equity evidence influences decision-making. NICE and ICER emphasize the need for deliberative processes to capture equity dimensions not reflected in traditional cost-effectiveness analysis.
Conclusion
Advancing health equity in HTA will require cross-sector collaboration to develop guidance, improve data infrastructure, and standardize methodologies. Equity-focused evidence generation across the “staircase of inequality” – from need to access and outcomes – can support more inclusive HTA and reimbursement decisions, ultimately fostering a fairer and more effective healthcare system.
This paper examines the prescription stimulant shortage in the United States, a crisis that has intensified since the FDA’s 2022 announcement of an Adderall shortage. The regulatory, systemic, and societal factors driving the shortage are analyzed — including the surge in attention-deficit/hyperactivity disorder (ADHD) diagnoses, expanded use of telehealth services, and disproportionate impact of the shortage on marginalized communities. It’s argued that existing health inequities are exacerbated by barriers to medication access as current regulatory frameworks are ill-equipped to address the growing demand for prescription stimulants, causing substantial harm to patients. A series of reforms are proposed — including modernizing the DEA’s quota system, strengthening interagency collaboration between the DEA, FDA, and HHS, and diversifying pharmaceutical supply chains to enhance resilience. These reforms aim to balance the dual imperatives of preventing misuse and ensuring equitable access to medications for patients with legitimate medical needs. By offering a comprehensive analysis of the prescription stimulant shortage and actionable policy recommendations, this paper seeks to inform regulatory reform, foster a more adaptive, patient-centered approach to ADHD care, and provide a roadmap for addressing one of the most pressing healthcare challenges of our time.
Trust in biomedical research is essential, multidimensional, and shaped by individual experiences, culture, and communication. Participants’ trust relies on researchers’ commitment to ethical practices. As public trust in science declines due to misinformation and disinformation campaigns, biomedical researchers (BmRs) must ensure trust and cultivate trustworthiness. This study explores BmR’s perspectives on trust and trustworthiness.
Methods:
We employed a qualitative, phenomenological approach to explore the experiences of BmRs. Through purposive sampling via the Indiana Clinical and Translational Sciences Institute, we invited BmRs to participate in semi-structured interviews. We employed rapid qualitative analysis (RQA) to identify key themes from interviews with BmRs. This action-oriented approach enables a research team to efficiently summarize experiences and perspectives, using structured templates and matrixes for systematic analysis and interpretation.
Results:
Fourteen BmRs were interviewed. Volunteer demographics were collected for race/ethnicity, gender, faculty rank, and investigator experience level. The following domains were identified: individual trust and trustworthiness, institutional trustworthiness, and trust and equity as a crucial part of structural and social drivers of health.
Conclusion:
We recognize that BmRs are dedicated to health equity and addressing disparities. However, in addition to committing to “best practices,” BmRs should prioritize actions that foster genuine trust from the communities they serve. More development opportunities are needed for reflection of what it means to be trusted by research volunteers and communities. Furthermore, intentions alone aren’t sufficient; earned trust and trustworthiness are vital.
Medicaid serves vulnerable populations that experience deep health inequities and significant health-related social needs. In recent years, reforms to Medicaid have sought to respond to those needs, with mixed results. Value based payment methods, which in theory link payment to outcome metrics, are emerging in commercial insurance markets and can be adapted to the needs of Medicaid programs and their beneficiaries. These methods seek to tie payment for services to the forging of connections between medical and social care including housing supports and nutrition services for vulnerable populations. This paper describes the merits and some pitfalls of the attempt to turn Medicaid from its roots as a medical insurance program to a broader health insurance program. It describes the benefits of employing community care hubs – intermediaries between community-based organizations and large payers and hospital systems – as a way to spur the move to social care in Medicaid. It also addresses some of the barriers to this move, including the perceived danger of “medicalizing” society’s failures and the apparent turn by the current federal administration away from commitment to health equity.
Underrepresentation of people of color in clinical trials limits equity in research and treatment outcomes. This study evaluated the impact of a brief, community-focused educational intervention on perceptions and willingness to participate. Participants attended 30-minute sessions (9 virtual, 2 in-person). Identical pre- and post-surveys were analyzed using paired t-tests with Bonferroni correction. Eighty-three participants (90.5% Black, 88.4% female; mean age 46.3) showed significant improvements in comfort with participation, randomization, belief in protections, willingness to participate, and comfort in skin-related trials (all p < 0.05). Brief education may improve understanding and participation attitudes in underrepresented groups.