Health care disparities exist throughout the NAR. In the United States, both economic and “ethnic” factors play an important role. Our knowledge of these disparities, which are influenced by “race,” age, region, education, and income, is minimal.
U.S. health care is provided under a wide variety of insurance schemes, based mainly on employment. About 43.3 million people in the United States were uninsured in 2003, about 17% of the nonelderly population (Kaiser Commission on Medicaid and the Uninsured, 2004). For the elderly, the federal Medicare system provides basic physician and hospital coverage. A limited prescription-drug benefit is being introduced. Medicaid, a program for the poor, faces severe cutbacks in eligibility and services because of costs. Despite calls for universal health coverage from prestigious organizations such as the National Academy of Sciences, it is unlikely to appear in the foreseeable future (Pear, 2004). Patients with private insurance are nearly twice as likely as are those with Medicaid to be offered follow-up clinic appointments within a week after emergency department visits; the implications for epilepsy care are striking (Asplin et al., 2005).
Some minority groups, such as Hispanics, American Indians, and African Americans, tend to be overrepresented among people in poverty. In 2004, 34% of Hispanics were uninsured, and 21% of blacks, compared with 11% of whites (Center for the Evaluative Clinical Sciences, 1998). Even when patients have insurance, high “copayments” may lead to reduced medication compliance for patients with chronic diseases (Newacheck et al., 1998; Goldman et al., 2004).
In an Epilepsy Foundation survey, 90% of U.S. epilepsy survey respondents were taking AEDs: 56% were receiving monotherapy; 26% were taking two; 6%, three; and 2%, four drugs. Only 68% of respondents were “very satisfied” with their current medications. Seizure control and side effects (particularly cognition and energy level) were the most important therapeutic issues, and drug cost was relatively less important. Eighty percent were “satisfied” with their medical care; 82% had health insurance coverage; 94% had seen a neurologist. Respondents had received less education, were less likely to be employed or married, and came from lower-income households than did the overall U.S. population (Fisher et al., 2000b).
Insurance companies, including the prescription drug plans approved by Medicare, may require “prior authorization” for prescriptions, a step approach, or “fail first” policies for use of AEDs, to limit use of high-cost drugs. Additionally, patient costs may vary widely among these drug plans, further limiting access. Some studies suggest that appropriate care has been compromised, particularly when the expensive drug has no or few alternatives (Soumerai, 2004). Others suggest, however, that HMO practices such as gate keeping, designed to reduce costs by limiting specialist access, may not have a clear negative impact (Ferris et al., 2001). In the United States, access to AEDs may be limited by cost. Although no specific data are available, this is likely to be an important issue for the ∼15% of the population without health insurance at any given time. For patients with insurance and in HMOs, several factors may influence AED options. In a study of expensive new drugs in 53 organizations, etanercept and celecoxib were much more likely to be covered than were sildenafil and bupropion. Prior authorization, thought to encourage medically appropriate use, was more common for the former; coverage of sildenafil and buproprion was limited predominantly through generalized exclusion or restrictions on quantity or duration of use. Value judgments seemed more important than cost in coverage decisions (Titlow et al., 2000).
Increased use of generic drugs may affect care as well as reduce cost. Data from a California Medicare HMO whose coverage changed to a generic-only benefit showed reduced health plan pharmacy cost, increased out-of-pocket pharmacy costs for members, increased overall hospital admissions, and a negative impact on quality of care for several chronic disorders (Christian-Herman et al., 2004).
Native Americans, who may have higher epilepsy prevalence, confront barriers to care including geographic isolation, poor general living conditions (such as lack of telephones), lack of translation or interpretation services, distrust of caregivers, and traditional perspectives on epilepsy (i.e., a spiritual cause). A “persistent crisis” in Native American health is underlined by inadequate resources and high mortality compared with the United States as a whole (Roubideaux, 2005).
Illegal immigrants in the United States confront substantial barriers to medical care. Forty-seven percent of noncitizens, compared with 15% of citizens, did not have health insurance in 2005 (Capps et al., 2005). Patients may be unwilling to access physicians or emergency department care because of fear of legal consequences; even when care is provided, local free health coverage programs are economically unsustainable over a long period without federal support (Hirota et al., 2006) Children from immigrant families had worse physical health than did children from nonimmigrant families and used care services at significantly lower frequency (Huang et al., 2006). Moreover, low levels of acculturation may be associated with higher family and personal stress, social alienation, and symptoms of depression (Miller et al., 2006).
A recent study found that 27% of all nonelderly women and 67% of uninsured women report they delayed or went without care they believed they needed in the past year because they could not afford it, compared with 24% and 59%, respectively, in 2001 (Kaiser Family Foundation, 2005).
The United States has one of the largest proportions of immigrants in its history, comparable to the years around 1900. Cultural barriers that are barely recognized by the medical community may affect access to, and efficacy of, medical care. A recent study suggested that resident physicians receive little training for, and are poorly prepared to deliver cross-cultural care (Weisman et al., 2005).
Inner city populations face limited finances and insurance, low education, and low expectations from patients by family members; and high use of alcohol and other drugs by caretakers. Children may have no adults to take them to appointments for a variety of reasons. Patients may have poor understanding of, and compliance with, instructions, leading to unnecessary seizure recurrences and emergency department visits. Patients visit multiple area health care facilities; care is often fragmented and suboptimal. Fewer private physicians exist in inner cities than in more prosperous areas. Fewer minority women seem to seek care for epilepsy. This may be due to fear of stigma, particularly perceptions about epilepsy in ethnic minority populations, in addition to the financial and social barriers facing all minority patients.
Disparities may exist in the surgical treatment of uncontrolled epilepsy. Seventy of 130 patients with temporal lobe epilepsy and mesial temporal sclerosis on MRI underwent surgery at University of Alabama Birmingham from July 1998 through January 2003 (Bureno et al., 2005). Multivariate logistic regression incorporating age, sex, income, insurance status, and education showed that African Americans were less likely to receive surgery compared with non-Hispanic whites (odds ratio, 0.4; 95% CI, 0.2–1.2). This finding, which could be related to referring physician practice patterns, surgery-center decisions, or even patient population cultural preferences, needs replication.
Hospitalization rates for epilepsy show regional and ethnic variation (National Center for Health Care Statistics, 2004). Epilepsy was the first-listed diagnosis for an estimated 466,000 hospitalizations; the age-adjusted hospitalization rate was 37 hospitalizations per 100,000. Rates were higher in men, patients older than 65, in Northeast (49/100,000) than in the South (37/100,000), North Central (35/100,000), and West (27/100,000), and substantially lower for whites (35/100,000) than for all other racial groups combined (51/100,000)—particularly older age groups. Thus during 1988–1992, ∼93000 hospitalizations each year were attributed to epilepsy. Based on the estimated prevalence of self-reported epilepsy (50/100,000), an estimated 8% of PWE are hospitalized each year, including 25% 65 years or older (Jerath and Kimbell, 1981).
Care access appears lowest in the South (except Florida), and highest in New England, Minnesota, and Iowa (Fig. 3 and Table 8). For example, Massachusetts has among the lowest percentage of minority (13%), uninsured (9%), and rural (9%) residents and the highest per capita number of neurologists (11.9). Compared with Massachusetts, Louisiana has approximately twice the percentage of minority and uninsured residents, 3 times the percentage living rurally, but only half the per capita neurologists.
Table 8. Indicators of access to neurologic care, in the United States, by state
|State||Neurologists per 1,000 PWE||Rural Residence||Nonwhite||Uninsured (% Pop)||Uninsured PWE (n)|
|Hawaii||6.3|| 9%||74%||10%|| 706|
|Iowa||4.8||39%|| 5%|| 9%|| 1,511|
|Idaho||4.5||34%|| 5%||16%|| 1,279|
|Massachusetts||11.9 || 9%||13%|| 9%|| 3,436|
|Maryland||10.6 ||13%||37%||12%|| 4,271|
|Minnesota||8.9||29%||10%|| 8%|| 2,368|
|Montana||7.2||46%|| 9%||15%|| 824|
|North Carolina||5.8||40%||26%||15%|| 7,221|
|North Dakota||6.5||44%|| 7%||11%|| 412|
|Nebraska||5.0||30%|| 8%||10%|| 987|
|New Hampshire||7.0||41%|| 4%|| 9%|| 685|
|New Jersey||7.6||6%||23%||13%|| 6,628|
|New Mexico||4.4||25%||15%||22%|| 2,404|
|Oregon||6.4||21%|| 9%||13%|| 2,738|
|Rhode Island||8.6||9%||11%|| 8%|| 523|
|South Carolina||4.9||40%||32%||12%|| 2,969|
|South Dakota||7.1||48%||11%||11%|| 481|
|Utah||4.9||12%|| 6%||14%|| 1,830|
|Vermont||7.9||62%|| 3%||10%|| 351|
|Wisconsin||6.3||32%||10%|| 8%|| 2,708|
|West Virginia||5.6||54%|| 5%||14%|| 1,518|
|Wyoming||3.7||35%|| 5%||16%|| 486|
Accessibility, cost, prejudice, superstition, and lack of patient or primary care physician knowledge may limit use even of extensive resources to a small portion of PWE. Lack of insurance, particularly, may vitiate the effect of the apparently rich U.S. milieu, leading to outcomes comparable to those of less opulent environments. AAN estimates suggest some of the largest states have highest levels of uninsured PWE (Fig. 2). Lack of insurance may be particularly serious in epilepsy because of high AED costs.
In the period 2000–2002, 66 Caymanians with epilepsy had EEGs. Fifty-five patients had CTs, 15 had MRIs, and six had both. Almost all AEDS are available and in use; CBZ and PHT are the most common. Of identified 118 PWE, 112 were receiving AEDs; 74 patients were taking one; 32, two; five, three; and one, five drugs
In Jamaica, most adult epilepsy patients have a CT scan. Practitioners often refer to a neurologist only if the scan is negative, seizures not controlled or, increasingly, at the patient's request. Pediatric patients, however, are generally referred immediately to a pediatrician and frequently hence to the pediatric neurologist. Most AEDS are available, although newer drugs may not initially be available in the public hospitals.
Throughout the ESC, epilepsy care is financed through a patchwork comprising out-of-pocket, tax-based, social insurance, and private insurance, in every country, but the relative representation of these sources is likely to be quite different. Only Jamaica and Trinidad/Tobago lack disability programs for people with epilepsy. Of all the NAR nations, only Jamaica records a separate epilepsy component (5%) of the federal health budget.