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Background: Emerging evidence suggests that inborn errors of immunity (IEI) are underdiagnosed among underserved populations. However, there remains a lack of national studies evaluating diagnostic disparities in IEI. Objective: We examined disparities in the timely IEI diagnosis and related health outcomes. Methods: A retrospective analysis was performed of a US national claims database (years 2007 to 2021). Participants included patients diagnosed with an “unspecified immune deficiency” (uID) and presented with IEI-related symptoms, who later received an IEI diagnosis (n = 1429). We quantified the diagnostic interval from clinical suspicion (uID) to IEI diagnosis and examined its association with sociodemographic factors and related health outcomes. Results: The median (interquartile range) diagnostic interval was 369 (126-808) days. Diagnostic interval was 14% longer among patients residing in predominantly non-White neighborhoods, compared with those in predominantly White neighborhoods (P = .04), despite having more severe IEI-related symptoms at uID diagnosis and significantly more health care encounters for pneumonia (incidence rate ratio, 2.24; 95% confidence interval, 1.40-3.70) and sepsis (incidence rate ratio, 2.15; 95% confidence interval, 1.21-3.99) in the year after uID diagnosis. Residence in neighborhoods with greater deprivation was also associated with more severe IEI-related symptoms and greater health care utilization in the year after uID diagnosis. Older age was associated with longer diagnostic interval (P < .001). Longer diagnostic interval was associated with a longer interval to receiving IgR therapy (hazard ratio, 0.64; 95% confidence interval, 0.49-0.83). Conclusion: We observed significant racial and socioeconomic disparities in the timeliness of IEI diagnosis and IEI-related outcomes. Further studies are needed to address the underlying factors contributing to diagnostic inequity.

Background: For consumers without access to employer-sponsored or public insurance, health plan choices in the non-group (individual) insurance market that do not meet consumer needs have the potential for negative downstream implications for health and financial well-being. Objective: This qualitative interview study sought to understand consumers’ experiences and challenges with choosing a non-group health plan, among those who later had negative experiences with the plan they chose. Methods: We conducted semi-structured telephone interviews with a purposive sample of 36 participants from a large regional health insurance carrier in three states who enrolled in non-group plans in 2017 (21 in Affordable Care Act (ACA) Marketplace plans and 15 enrolled off-Marketplace). Participants were included if they reported negative experiences using their plan after enrollment, such as higher-than-expected medical costs. Interviews explored challenges choosing a plan; information needed for choosing; usefulness of available tools; and preferred format for interventions to improve plan choice experiences. We analyzed interview transcripts using thematic content analysis. Results: Study participants reported experiencing substantial challenges to choosing an insurance plan. Key barriers included understanding insurance terms, finding relevant information, and making comparisons across plans. Participants valued the ability to make comparisons across carriers when using the Marketplace websites but were less satisfied with customer service. Suggestions for improvement included greater standardization of plans and language and availability of customized one-on-one assistance. Conclusion: Findings from this study suggest that health plan selection in the non-group market presents challenges to consumers that may be addressed through enrollment assistance and improved presentation of information. Personalized assistance to find and choose coverage may lead to plan choices that better meet consumer needs and increase confidence choosing a plan in subsequent enrollment periods.

Objectives: Regular users of the emergency department (ED) include both patients who could be better served in lower-acuity settings and those with high-severity conditions. ED use decreased during the COVID-19 pandemic, but patterns among regular ED users are unknown. To determine the impact of the COVID-19 pandemic on this population, we examined quarterly postpandemic ED utilization among prepandemic regular ED users. Key subgroups included prepandemic ED users with regular visits for (1) low-severity conditions and (2) high-severity conditions., Study Design: An event study design with COVID-19 and historic controls cohorts., Methods: We identified 4710 regular ED users at baseline and followed their ED utilization for 7 quarters. We used a generalized estimating equations model to compare the relative quarterly percent difference in ED visit rates between the COVID-19 and historic controls cohorts., Results: The first postpandemic quarter was associated with the largest decline in ED visits, at -36.0% (95% CI, -42.0% to -29.3%) per regular ED user overall, -52.2% (95% CI, -69.4% to -25.3%) among high-severity users, and -29.6% (95% CI, -39.8% to -17.8%) among low-severity users. However, use did not statistically differ from expected levels after 5 quarters among all regular ED users, 1 quarter among high-severity users, and 3 quarters among regular low-severity users., Conclusions: Initial reductions among regular high-severity ED users raise concern for harm from delayed or missed care but did not result in increased high-severity visits later. Nonsustained declines among regular low-severity ED users suggest barriers to and opportunities for redirecting nonurgent ED use to lower-acuity settings.

Background: Racial and ethnic disparities in life expectancy in the United States have been widely documented. To date, there remains a paucity of similar data in patients with inborn errors of immunity (IEIs)., Objective: Our aim was to examine racial and ethnic differences in mortality due to an IEI in the United States., Methods: We analyzed National Center for Health Statistics national mortality data from 2003 to 2018. We quantified age-adjusted death rate and age-specific death rate as a result of an IEI for each major racial and ethnic group in the United States and examined the association of race and ethnicity with death at a younger age., Results: From 2003 to 2018, IEIs were reported as the underlying or contributing cause of death in 14,970 individuals nationwide. The age-adjusted death rate was highest among Black patients (4.25 per 1,000,000 person years), compared with 2.01, 1.71, 1.50, and 0.92 per 1,000,000 person years for White, American Indian/Alaska Native, Hispanic, and Asian/Pacific Islander patients, respectively. The odds of death before age 65 years were greatest among Black patients (odds ratio [OR] = 5.15 [95% CI = 4.61-5.76]), followed by American Indian/Alaska Native patients (OR = 3.58 [95% CI = 2.30-5.82]), compared with White patients. The odds of death before age 24 years were greater among Hispanic patients than among non-Hispanic patients (OR = 3.60 [95% CI = 3.08-4.18])., Conclusion: Our study highlights racial and ethnic disparities in mortality due to an IEI and the urgent need to further identify and systematically remove barriers in care for historically marginalized patients with IEIs., (Copyright © 2023 American Academy of Allergy, Asthma & Immunology. Published by Elsevier Inc. All rights reserved.)

Political orientation can be a powerful motivator of certain health care decisions. This study examines how political orientation was associated with decisions to use the Affordable Care Act Marketplaces to enroll in nongroup health insurance plans and whether it was also associated with adverse financial consequences. We used administrative records and surveys of nongroup Marketplace enrollees from a large insurer in New England. Enrollees were categorized as Republican, Democrat, or independent through self-identification or were assigned to one of the political parties after responding to a political preference question. Republican enrollees were less likely than Democratic enrollees of comparable subsidy eligibility to enroll through the Marketplaces and receive subsidies. Among income-eligible enrollees, Republican subscribers received $66 per month less in premium subsidies than Democratic subscribers, equivalent to roughly $800 per year. However, this result varied by subgroups in the parties, and our results suggest that party effects on decision making may inversely relate to the magnitude of the financial consequence. Navigating the ongoing political polarization in the United States requires optimizing public policies, as well as the associated education and outreach, to ensure maximal efficacy regardless of political orientation.

More than 20 percent of Affordable Care Act (ACA) exchange market (Marketplace) members insured by a large national insurer in 2015 and 2016 enrolled during a special enrollment period (SEP), defined as any enrollment outside the annual open enrollment period. These members were younger and had approximately 34 percent higher average monthly total costs than members who enrolled during open enrollment. SEP members had 69-114 percent higher inpatient costs and 11-19 percent higher emergency department costs than open enrollment members. Higher costs, especially among a slightly younger population, may suggest potential adverse selection among SEP members, which could contribute to increased premiums and insurer exit from ACA Marketplaces. Although SEP members had a shorter average enrollment length per calendar year, they were more likely than open enrollment members to stay insured through the end of the calendar year and to renew in a Marketplace plan offered by the insurer in the following year. However, renewing SEP and open enrollment members were older, sicker, and costlier than nonrenewing members of both enrollee types, which suggests that healthier members are switching carriers or leaving the market over time. Additional research is urgently needed to inform evidence-based policy regarding Marketplace risk adjustment and SEP eligibility rules and to improve outreach to people who are eligible for SEP enrollment.

Women of working age (ages 19-64) faced specific challenges in obtaining health insurance coverage and health care before the Affordable Care Act. Multiple factors contributed to women's experiencing uninsurance, underinsurance, and increased financial burdens related to obtaining health care. This literature review summarizes evidence on the law's effects on women's health care and health and finds improvements in overall coverage, access to health care, affordability, preventive care use, mental health care, use of contraceptives, and perinatal outcomes. Despite major progress after the Affordable Care Act's implementation, barriers to coverage, access, and affordability remain, and serious threats to women's health still exist. Highlighting the law's effects on women's health is critical for informing future policies directed toward the continuing improvement of women's health care and health.

The health insurance Marketplaces established by the Affordable Care Act include features designed to simplify the process of choosing a health plan in the individual, or nongroup, insurance market. While most individual health insurance enrollees purchase plans through the federal and state-based Marketplaces, millions also purchase plans directly from an insurance carrier (off Marketplace). This study was a descriptive comparison of the decision-making processes and shopping experiences of consumers in two states who purchased a health insurance plan from the same large insurer in 2017, either through the federal Marketplaces or off Marketplace. In a survey, those who selected plans through the Marketplaces reported less difficulty finding the best or most affordable plan than did those enrolling off Marketplace. Respondents in families with chronic health conditions who enrolled through the Marketplaces reported better overall experiences than those who enrolled off Marketplace. Respondents with low health insurance literacy reported poor experiences in enrolling both through the Marketplaces and off Marketplace. Access to consumer assistance in the individual health insurance market should target off-Marketplace populations as well as all populations with low health insurance literacy.

Background: Underuse of controller medicines among children with asthma remains widespread despite national guidelines., Objectives: To (1) assess provider prescribing patterns for asthma controller medications; (2) assess how frequently parents' reports of their child's asthma controller medicine use were mismatched with their provider's recommendations; and (3) evaluate parent attitudes and demographic characteristics associated with these mismatches., Methods: In this cross-sectional study, we conducted linked surveys of parents and providers of children with probable persistent asthma in a Medicaid program and 4 commercial health plans in 2011. Probable persistent asthma was defined as a diagnosis of asthma and 1 or more controller medication dispensing., Results: This study included 740 children (mean age, 8.6 years). Providers for 50% of the children reported prescribing controller medications for daily year-round use, 41% for daily use during active asthma months, and 9% for intermittent use for relief. Among parents, 72% knew which class of controller medication the provider prescribed and 49% knew the administration frequency and the medication class. Parents were less likely to report the same controller medication type as the provider, irrespective of dose and frequency, if they were Latino (odds ratio [OR], 0.23; CI, 0.057-0.90), had a household smoker (OR, 2.87; CI, 0.42-19.6), or believed the controller medicine was not helping (OR, 0.15; CI, 0.048-0.45)., Conclusions: Mismatches between parent reports and providers intentions regarding how the child was supposed to use inhaled steroids occurred for half of the children. Efforts should focus on ways to reduce mismatches between parent and provider intentions regarding controller medication use., Competing Interests: The authors have no conflicts of interest., (Copyright © 2016 American Academy of Allergy, Asthma & Immunology. Published by Elsevier Inc. All rights reserved.)

Importance: The Patient Protection and Affordable Care Act (ACA) includes subsidies that reduce patient cost sharing for low-income families. Limited information on the effects of cost sharing among children is available to guide these efforts., Objective: To examine the associations between cost sharing, income, and care seeking and financial stress among children with asthma., Design, Setting, and Participants: A telephone survey in 2012 about experiences during the prior year within an integrated health care delivery system. Respondents included 769 parents of children aged 4 to 11 years with asthma. Of these, 25.9% of children received public subsidies; 21.7% were commercially insured with household incomes at or below 250% of the federal poverty level (FPL) and 18.2% had higher cost-sharing levels for all services (e.g., ≥$75 for emergency department visits). We classified children with asthma based on (1) current receipt of a subsidy (i.e., Medicaid or Children's Health Insurance Program) or potential eligibility for ACA low-income cost sharing or premium subsidies in 2014 (i.e., income ≤250%, 251%-400%, or >400% of the FPL) and (2) cost-sharing levels for prescription drugs, office visits, and emergency department visits. We examined the frequency of changes in care seeking and financial stress due to asthma care costs across these groups using logistic regression, adjusted for patient/family characteristics., Main Outcomes and Measures: Switching to cheaper asthma drugs, using less medication than prescribed, delaying/avoiding any office or emergency department visits, and financial stress (eg, cutting back on necessities) because of the costs of asthma care., Results: After adjustment, parents at or below 250% of the FPL with lower vs higher cost-sharing levels were less likely to delay or avoid taking their children to a physician's office visit (3.8% vs. 31.6%; odds ratio, 0.07 [95% CI, 0.01-0.39]) and the emergency department (1.2% vs. 19.4%; 0.05 [0.01-0.25]) because of cost; higher-income parents and those whose children were receiving public subsidies (eg, Medicaid) were also less likely to forego their children's care than parents at or below 250% of the FPL with higher cost-sharing levels. Overall, 15.6% of parents borrowed money or cut back on necessities to pay for their children's asthma care., Conclusions and Relevance: Cost-related barriers to care among children with asthma were concentrated among low-income families with higher cost-sharing levels. The ACA's low-income subsidies could reduce these barriers for many families, but millions of dependents for whom employer-sponsored family coverage is unaffordable could remain at risk for cost-related problems because of ACA subsidy eligibility rules.

In 2022 twenty-five million people are expected to purchase health insurance through exchanges to be established under the Affordable Care Act. Understanding how people seek information and make decisions about the insurance plans that are available to them may improve their ability to select a plan and their satisfaction with it. We conducted a survey in 2010 of enrollees in one plan offered through Massachusetts's unsubsidized health insurance exchange to analyze how a sample of consumers selected their plans. More than 40 percent found plan information difficult to understand. Approximately one-third of respondents had help selecting plans-most commonly from friends or family members. However, one-fifth of respondents wished they had had help narrowing plan choices; these enrollees were more likely to report negative experiences related to plan understanding, satisfaction with affordability and coverage, and unexpected costs. Some may have been eligible for subsidized plans. Exchanges may need to provide more resources and decision-support tools to improve consumers' experiences in selecting a health plan.

Objectives: Our aims were (1) to describe rates of suboptimal control and controller medication underuse in a diverse population of children with asthma and (2) to identify potentially modifiable parental behaviors and beliefs associated with these outcomes., Methods: We conducted telephone interviews with parents of 2- to 12-year-old children with persistent asthma, in a Medicaid plan and a large provider group. Suboptimal control was defined as >or=4 symptom days, >or=1 symptom night, or >or=4 albuterol use days in the previous 2 weeks. Controller medication underuse was defined as suboptimal control and parent report of <6 days/week of inhaled steroid use. Multivariate analyses identified factors that were independently associated with suboptimal control and controller medication underuse., Results: Of the 754 study children, 280 (37%) had suboptimal asthma control; this problem was more common in Hispanic children (51%) than in black (37%) or white (32%) children. Controller medication underuse was present for 133 children (48% of those with suboptimal asthma control and 18% overall). Controller medication underuse was more common among Hispanic (44%) and black (34%) children than white (22%) children. In multivariate analyses, suboptimal control was associated with potentially modifiable factors including low parental expectations for symptom control and high levels of worry about competing household priorities. Controller medication underuse was associated with potentially modifiable factors including parental estimation of asthma control that was discordant with national guidelines and no set time to administer asthma medications., Conclusions: Deficiencies in asthma control and controller medication use are associated with potentially modifiable parental beliefs, which seem to mediate racial/ethnic and socioeconomic disparities in suboptimal control and controller medication underuse.

Objective: To examine whether income-related disparities in the burden of children's out-of-pocket health care expenditures have diminished with the expansions in public insurance for children in low-income families., Design: We compared absolute financial burden (out-of-pocket expenditures per child) and relative financial burden (out-of-pocket expenditures per child as a proportion of family income) among children aged 0 to 18 years in 6 poverty level groups using the 1980 National Medical Care Utilization and Expenditure Survey and the 2000 Medical Expenditure Panel Survey. Regression models were used to assess whether disparities in financial burden diminished between 1980 and 2000., Results: There were significant reductions (P<.01) in absolute burden over time for children above 200% of the federal poverty level. Relative financial burden decreased significantly (P<.01) for all of the income groups, ranging from a reduction of 36.49% for those below 100% of the federal poverty level (95% CI, -49.54% to -20.07%) to a reduction of 46.69% for those at or above 300% of the federal poverty level (95% CI, -54.43% to -37.62%). For low-income children, relative financial burden was 49.49% less with public insurance (95% CI, -66.24% to -24.35%) and 79.14% greater with private insurance (95% CI, 9.31% to 193.59%) than relative financial burden for low-income children without insurance., Conclusions: While the financial burden of children's out-of-pocket health care expenditures has decreased for all of the income groups over time, socioeconomic disparities persist. However, public insurance coverage appears to mitigate the financial burden for low-income children.