Epilepsy: A Comprehensive Textbook
2nd Edition
© 2008 Lippincott Williams & Wilkins
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Chapter 289
Brazil
Carlos A. M. Guerreiro
Introduction
Brazil is a country of continental dimensions (8,511,965 km2), divided into 26 states and a federal district. In 2004, its population was estimated to be 178.4 million inhabitants; life expectancy at birth (male/female), 66.0/73.0 years; gross domestic product (GDP) per capita (international $, 2002), U.S. $7,762; health life expectancy at birth (male/female), 57.2/62.4; child mortality (male/female) per 1,000, 39/32; adult mortality (male/female) per 1,000, 240/129; and total health expenditure per capita (international $, 2002), 611; and total health expenditure as percentage of GDP (2002), 7.9.53 In October 2005 the estimated population was 184.7 million inhabitants.
Brazil has achieved dramatic results in improving living conditions: Infant mortality declined from around 50 per 1,000 live births in 1990 to 33 per 1,000 in 2000, and net enrollment in basic education rose from 84% in 1991 to 97% in 2002. Brazilians with access to an improved water source rose from 73% of the population in 1986 to 87% in 2001.
Despite Brazil’s impressive advances, the poorest one fifth of Brazil’s 184.7 million people account for only a 2.2% share of the national income. Brazil is second only to South Africa in a world ranking of income inequality. More than one quarter of the population live on <$2 a day and 13% live on <$1 a day. Brazil’s northeast contains the single largest concentration of rural poverty in Latin America. Past development programs have failed to make a major dent in a region in which 49% of the population is classified as poor.
Crime is plaguing urban Brazil. Political corruption is also a serious problem in the country.
In global terms, Brazil rates 13th in economic strength and among the first group of countries in agricultural production.54
Information related to demographic, socioeconomic, and health indicators of the country is listed in Tables 1 and 2.16,54
General Data on the Health System
Some states in the country suffer more than others, particularly from some long-standing endemic diseases such as dengue, cholera, Chagas disease, schistosomiasis, and malaria. New diseases, such as AIDS, are also a growing problem.
The rate of reported AIDS cases increased from 10.6 per 100,000 in 1992 to a high of 18.7 per 100,000 in 1998. Brazil has experienced a stabilizing trend with rates of 16.5, 16.4, and 14.8 per 100,000 in 1999, 2000, and 2001, respectively. In the last decade, heterosexual transmission of reported AIDS cases grew from 25.8% in 1991 to 56.1% in 2002. Since 1998, the death rate from AIDS has stabilized at 6.3 per 100,000. This tendency is attributed to Brazil’s guarantee of access to free antiretroviral drugs since 1996.
The country also rose to the challenge posed by the single biggest health threat in the modern world, pioneering an anti-HIV/AIDS strategy that became an international model by guaranteeing universal access to retroviral medication.15
Brazil has a constitution that states that health is the right of every citizen and the duty of the state to provide. A law was passed on September 19, 1990, creating the Unified Health System (Sistema Único de Saúde [SUS]). The SUS is composed of the health activities and services provided by municipal, state, and federal organizations and institutions. This same law assumed the coexistence of private medicine in its various forms.
Despite this legislation, a great number of problems remain. These range from the social policies practiced by the federal government to the management of responsibility at the different levels and the effective management of rendering services.
Although SUS theoretically offers total coverage to everyone, in reality, only 77% of the population is covered, according to an estimate that we have applied using data from the federal government from 1994 (from the Bulletin of Ministry of Economy, 1994). Of those not covered, 22% were unassisted, and another 55% received some assistance. The remaining 23% sought assistance from the private sector: Medical insurance, health maintenance organizations (HMOs), traditional fee-for-service providers, and others.
Large portions of citizens receiving private medical care eventually seek, or are directed to, public health services. This happens especially in cases of chronic or terminal diseases and those involving complex and costly procedures. In these cases, there is no reimbursement from the public sector.
Epilepsy Data
An epidemiologic study with a selected sample size of 17,293 individuals revealed that the cumulative prevalence of epilepsy in São José do Rio Preto, a 350,000-inhabitant city in São Paulo state, was 18.6 per 1,000 inhabitants with 8.2 being active, defined as at least one seizure within the last 2 years. The prevalence per 1,000 inhabitants for the age groups (years) was 4.9 (0 to 4), 11.7 (5 to 14), 20.3 (15 to 64), and 32.8 (65 or over).12
Table 1 Socioeconomic, Demographic, and Health Indicators Data about Brazil
  Most recent year Data
Socioeconomic context
Total population (000s) 2003 176,596
GNI per capita, Atlas method (U.S.$) 2003 2,760
Expected years of schooling 2002 15
Adult literacy rate (% of population ages 15+) 2003 88
Demographic indicators
Average annual population growth rate (%) 1990–2003 1.4
Age dependency ratio (dependents as a proportion of working-age population) 2003 0.5
Total fertility rate (births per woman) 2003 2.1
Adolescent fertility rate (births per 1,000 women ages 15–19) 2003 68
Contraceptive prevalence rate (% of women ages 15–49), any method 1996 76.7
Health status indicators
Life expectancy at birth (yr) 2003 69
Infant mortality rate (per 1,000 live births) 2003 33
Under 5 yr of age mortality rate (per 1,000) 2003 35
Maternal mortality ratio (per 100,000 live births), modeled estimates 2000 260
Prevalence of child malnutrition—underweight (% of children under age 5) 1996 6
Health care indicators
Child immunization rate, measles (% of ages 12–23 months) 2003 99
Child immunization rate, DPT3 (% of ages 12–23 months) 2003 96
Births attended by skilled health staff (% of total) 1996 87.6
Physicians (per 1,000 people) 2001 2.1
Hospital beds (per 1,000 people) 1996 3.1
Tuberculosis treatment success rate (% of registered cases) 2002 75
DOTS detection rate (% of estimated cases) 2003 18
Health finance indicators
Health expenditure, total (% of GDP) 2002 7.9
Health expenditure, public (% of GDP) 2002 3.6
Health expenditure, public (% of total health expenditure) 2002 45.9
Health expenditure per capita (U.S.$) 2002 206.0
Risk factors and future challenges
Prevalence of HIV, total (% of population ages 15–49) 2003 0.70
Prevalence of HIV, female (% of population ages 15–24) 2001 0.50
Tuberculosis incidence (per 100,000 people) 2003 62
Tuberculosis death rate (per 100,000 people) 2002 8
DOTS, directly observed treatment strategy; DPT3, three doses of the combined vaccination against diphtheria, pertussis, and tetanus; GDP, gross domestic product. GNI, gross national income.
From World Bank. Health Nutrition Population. Available at: http://web.worldbank.org/WBSITE/ EXTERNAL/COUNTRIES/LACEXT/BRAZILEXTN/0, contentMDK:20189430∼pagePK: 141137∼piPK:141127∼theSitePK:322341,00.html. Accessed: August, 2005.
Very recent data from the Demonstration Project of Global Campaign Against Epilepsy, in Brazil, supported by the International League Against Epilepsy, the International Bureau for Epilepsy, and the World Health Organization, revealed that the prevalence of cumulative and active epilepsy, respectively, was 9.1 per 1,000 and 5.3 per 1,000 people in Campinas and São José do Rio Preto, both in São Paulo state.40 The prevalence of active epilepsy was higher in the more deprived social classes (range from A = richest to E = poorest) in Campinas and in São José do Rio Preto (Class D + E = 7.4 vs. Class A = 1.6 per 1,000). Over one third of patients with active epilepsy had inadequate treatment, including 19% who were on no medication. These data illustrate the treatment gap in the area.40 In another study based on data from the central municipal pharmacy of Campinas and São José do Rio Preto in 2003, it was estimated that in the best-case scenario, 50% of patients with epilepsy were not on medication on a regular basis.41
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Campinas and São José do Rio Preto are two cities located in one of the wealthier regions of Brazil, where there is a good public and private health care system and where the population has easy access to treatment.
Neurologists
Based on data furnished by a Novartis profile, 4,863 neurologists were identified in Brazil in 2005. This probably included clinical neurologists, pediatric neurologists, and some neurosurgeons who practice clinical neurology. According to the Brazilian Academy of Neurology, there are 1,197 members, and the Brazilian Epilepsy Society had 477 members in 2005. The distribution of the number of neurologists per 100,000 inhabitants in the different states is shown in FIGURE 1. An analysis of FIGURE 1 reveals a distinct relationship between the per capita income of the state and the number of accessible neurologists. The higher-income areas have more neurologists,
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as in the case of the Federal District and the states of Rio de Janeiro, São Paulo, and Rio Grande do Sul. The latter state’s rates are close to those of the northeastern states in the United States.38
Table 2 General Information about Brazil in 2000, 2003, and 2004
  2000 2003 2004
People
Population, total 170.1 million 176.6 million 178.7 million
Population growth (annual %) 1.2 1.2 1.2
National poverty rate (% of population) ·· ·· ··
Life expectancy (yr) ·· 68.7 ··
Fertility rate (births per woman) ·· 2.1 ··
Infant mortality rate (per 1,000 live births) 35.0 33.0 ··
Under 5 yr of age mortality rate (per 1,000 children) 39.0 35.0 ··
Births attended by skilled health staff (% of total) ·· ·· ··
Child malnutrition, weight for age (% of children under age 5) ·· ·· ··
Child immunization, measles (% of under 12 mo) 99.0 99.0 ··
Prevalence of HIV, total (% of population aged 15–49) ·· 0.7 ··
Literacy rate, adult male (% of males ages 15 and above) ·· 88.3 ··
Literacy rate, adult female (% of females aged 15 and above) ·· 88.6 ··
Primary completion rate, total (% age group) 111.0 112.0 ··
Primary completion rate, female (% age group) 111.0 ·· ··
Net primary enrollment (% relevant age group) 94.6 ·· ··
Net secondary enrollment (% relevant age group) 69.2 ·· ··
Environment
Surface area (km2) 8.5 million 8.5 million ··
Forests (1,000 km2) 5.4 million ·· ··
Deforestation (average annual % 1990–2000) 0.4 ·· ··
Internal freshwater resources per capita (cubic meters) ·· 30,680.2 ··
CO2 emissions (metric tons per capita) 1.8 ·· ··
Access to improved water source (% of total population) ·· ·· ··
Access to improved sanitation (% of urban population) ·· ·· ··
Energy use per capita (kg of oil equivalent) 1,091.3 ·· ··
Electricity use per capita (kWh) 1,877.5 ·· ··
Economy
GNI, Atlas method (current U.S.$) 620.8 billion 486.9 billion 552.1 billion
GNI per capita, Atlas method (current U.S.$) 3,650.0 2,760.0 3,090.0
GDP (current U.S.$) 601.7 billion 505.7 billion 604.9 billion
GDP growth (annual %) 4.4 0.5 5.2
GDP implicit price deflator (annual % growth) 9.8 15.0 8.1
Value added in agriculture (% of GDP) 7.3 5.8 5.2
Value added in industry (% of GDP) 28.0 19.1 17.2
Value added in services (% of GDP) 64.7 75.1 77.7
Exports of goods and services (% of GDP) 10.7 16.9 22.5
Imports of goods and services (% of GDP) 12.2 13.1 17.0
Gross capital formation (% of GDP) 21.5 17.3 19.2
Revenue, excluding grants (% of GDP) ·· ·· ··
Cash surplus/deficit (% of GDP) ·· ·· ··
Technology and infrastructure
Fixed lines and mobile telephones (per 1,000 people) 318.7 486.5 ··
Telephone average cost of local call (U.S.$ per 3 minutes) 0.0 ·· ··
Personal computers (per 1,000 people) 50.1 ·· ··
Internet users (per 1,000 people) 29.4 ·· ··
Paved roads (% of total) 5.5 ·· ··
Aircraft departures 617.8 thousand 486.8 thousand ··
Trade and finance
Trade in goods as a share of GDP (%) 18.9 25.1 ··
High-technology exports (% of manufactured exports) 18.6 12.0 ··
Net barter terms of trade (1995 = 100) 100.0 ·· ··
Foreign direct investment, net inflows in reporting country (current U.S.$) 32.8 billion 10.1 billion ··
Present value of debt (current U.S.$) 223.8 billion 254.1 billion ··
Total debt service (% of exports of goods and services) 93.5 63.8 ··
Short-term debt outstanding (current U.S.$) 31.0 billion 19.6 billion ··
Aid per capita (current U.S.$) 1.9 1.7 ··
GDP, gross domestic product; GNI, gross national income.
From Development Indicators Database. Available at: http://devdata.worldbank.org/external/CPProfile.asp?SelectedCountry=BRA&CCODE+BRA&CNAME=Brazil&PTYPE=CP. Accessed August 2005.
FIGURE 1. The distribution of neurologists per 100,000 inhabitants in the different states of the federation.
FIGURE 2. Sales of the main antiepileptic drugs available in Brazil by private practices (averages through May 2005).
Neurologists practice principally in the private sector (52%), in specialized outpatient clinics or HMOs (22%), in hospitals (23%), and in the federal health system (3%).
Drugs
Clinicians and Neurologists
In clinical practice, the drugs most prescribed (almost a third of prescriptions) by neurologists are antiepileptic drugs (AEDs). General practitioners and pediatricians are also responsible for a good number of AED prescriptions in Brazil.
Recent research conducted at the end of 2004 and beginning of 2005 in the private sector in Brazil and the relative sales of some basic antiepileptic drugs in private practice are shown in FIGURE 2.14
Drug Consumption and Treatment
Recently, there has been a tendency to decrease the use of sedative drugs and to substitute them for carbamazepine or valproate. This indicates a change in the AED prescribing patterns described in 1979 and 1980.32
There are few quantitative data about compliance in patients with epilepsy in Brazil.1 To evaluate adherence, tolerance, and efficacy of the first AED prescribed, the author and colleagues followed 78 diagnosed epilepsy patients, ranging in age from 6 to 61 years (average, 17.96 years) for up to 29 months (average, 12.68 months). It was found that 11 patients (14.10%) did not adhere to the prescribed treatment, and 14 (17.94%) did not tolerate the first drug. Sixty-six percent of the patients were seizure free after 8 weeks of treatment, and 63.8% were seizure free after 56 weeks.28 These data are consistent with the international literature.9,13,18
Brazil is a good example of many intermediate-economy countries where there is unequal wealth distribution and low-income areas where only phenobarbital is available. In other areas, the four basic AEDs (carbamazepine, phenytoin, phenobarbital, and valproate) are available in public health care, and in some more organized parts of the country, the new drugs (gabapentin, lamotrigine, topiramate, and vigabatrin) are available, sponsored by the federal government. The latter scenario is probably found in the black areas of the Brazilian map shown in the FIGURE 1.
The Sistema Único de Saúde Reference System
The data mentioned above demonstrate the political, social, and economic heterogeneity of the country’s diverse regions. The public health system in one of the country’s most populous and prosperous regions, the state of São Paulo, illustrates this.
The state of São Paulo is divided into five large regions (macroregions). The following will focus on the region of Campinas, which comprises 19 urban communities and a population of approximately 3 million. This region is responsible for approximately 9% of the gross national product (GNP), being three times higher than the Brazilian GNP and twice the state average. Despite this, social inequities such as growing slum areas and urban violence have been revealed.
Health care is divided into three areas: Primary, secondary, and tertiary care. Primary care consists of home care, health
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centers that support general clinics, and diagnostic and therapeutic support services (SADTs). On a secondary level, besides SADT, there are specialized outpatient clinics and local and macroregional hospitals. Tertiary care includes specialized outpatient clinics (university hospitals), regional hospitals, and SADTs.
Federal government financial resources cover approximately 70% of medical expenditures. The remaining 30% is supplied by the municipalities and the state.
From a neurology practice point of view, electroencephalogram testing and computed tomography scanning are currently available in medium-sized cities, but magnetic resonance imaging is performed by federal services in large cities only.
Aspects Related to Epilepsy in Brazil
Types of Seizures and Epilepsy
In Brazil, there appears to be no significant difference to developed countries in the incidence of the diverse types of epileptic seizures and syndromes.27,44
Etiologies
The high incidence of parasitic diseases is one of the factors that contribute to the greater prevalence of epilepsy in Brazil. Neurocysticercosis is the most common of these parasites, and it is the most frequently diagnosed cause of epilepsy in adults.3,4,10,43,50,51 Seizures often start in childhood,35,42 and specific clinical and computed tomography findings have been described in children.24,30
Malaria, when it presents with cerebral complications, may result in epilepsy. It is also a cause of febrile convulsions in children in tropical regions, in the northern part of the country.45
Perinatal brain damage is another factor suggested as a cause for the high incidence of epilepsy. This is possibly true in regions with inadequate prenatal care. However, Sakamoto46 found that 14% of epilepsy cases were caused by perinatal lesions, which is no different from data collected by the Collaborative Perinatal Project of the National Institute of Neurological Diseases and Stroke in the United States.37
Because the incidence of motor vehicle accidents is high in Brazil, craniocerebral trauma is likely to be an important cause of epilepsy.11 Sakamoto46 found trauma to be the etiology of epilepsy in 3% of children and adolescents; Gorz et al.26 found trauma to be the etiology in 13% of adolescents and adults with epilepsy.
In a country like Brazil, basic strategies for the prevention of epilepsy should include prenatal care, safe childbirth, control of infections—especially parasitic diseases—and reduction of brain injury due to trauma and stroke.
Psychosocial Aspects
Lay knowledge of epilepsy in Brazil is clearly unsatisfactory. When evaluating the knowledge of public and private school teachers and those in medical areas, Simonatto et al.48 found it inadequate. The high rate of illiteracy and low cultural standards help perpetuate old prejudices about epilepsy. A comprehensive educational effort to inform the patients and their families about epilepsy is a basic step in successfully managing this condition.2
FIGURE 3. The number of presurgical evaluations registered by the Brazilian Epilepsy Program between 1994 and 2003.
Epilepsy is clearly associated with psychosocial difficul-ties.7,21,47 Prejudice and discrimination are often worse than the seizure itself7,36 with impact on the daily lives of people with epilepsy. According to studies carried out in Europe7,25,52 and North America,5,6,17 epilepsy stigma has been considered one of the most important negative factors on the quality of life of people with epilepsy. The definition of stigma in these studies8,33 is portrayed slightly differently and, in most cases, is based on qualitative assessment expressed in proportions. Fernandes23 has developed a scale to measure perception of stigma in epilepsy that consists of ten questions that provide a total score ranging from 0 (no stigma) to 100 (highest level of stigma). In a study carried out in Campinas, 1,850 people were interviewed and the results showed that the magnitude of stigma is different within demographics, such as gender, religion, and level of education, in an urban area. This finding is
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relevant as a reference for mass media campaigns to fight prejudice and improve social acceptance of people with epilepsy.
In southeast Brazil, Guerreiro et al.31 evaluated the impact of epilepsy on the quality of life in 17 recently diagnosed children. The relationship between parents and children was found to be significantly altered. However, culturally and socially, the interaction of these children in school and with their families did not show significant changes after the manifestation of epilepsy.49
A famous Brazilian with epilepsy is the writer Machado de Assis. He is considered by some to be the most important 19th-century writer in Latin America; in Brazil, he is considered the greatest of all time. Despite having cryptogenic localization-related epilepsy with complex partial seizures of right temporal lobe origin and despite the strong prejudices existing in the second half of the last century, he made good use of his genius through writing.29 His life serves as an example to other people with epilepsy and to those who may be prejudiced against the condition.
Specialized Centers
Considering the size of Brazil, there are few centers for the social rehabilitation of people with epilepsy. The ones that do exist have a multidisciplinary structure, are generally affiliated with a university, and are located mainly in the southern and southeastern regions of the country.
Brazilian National Epilepsy Surgery Program
Epilepsy surgery started with Niemeyer in Rio de Janeiro in the late 1950s. Indeed, he was the first to propose amygdalohippocampectomy to treat temporal lobe epilepsy and he described the technique in detail.39 In the 1970s, São Paulo University Medical School (USP) started a surgical program, followed by the Neurological Institute at Goiânia in the 1980s. In the 1990s, three epilepsy centers joined the group: Catholic University (PUC, Porto Alegre), University of São Paulo (USP-Ribeirão Preto), and State University of Campinas (UNICAMP).
In 1994, the Federal Health Department started the National Epilepsy Program within the Program of High Complexity Medical Procedures. Some of the program’s data over 10 years (1994 to 2003) in the eight approved centers are shown in Figures 3, 4, and 5.
Positive aspects of this public health policy were technical criteria for accreditation of epilepsy surgery centers, strong partnership between the Health Department and national medical societies, and a reimbursement policy granting epilepsy surgery the same status as renal transplantation. Of note are that seven of the eight epilepsy surgery centers are university institutions; presurgical investigation and surgeries are at internationally accepted standards; morbidity, mortality, and outcome figures are similar to major epilepsy surgery centers; and there is progressive development of new epilepsy surgery centers and a network of epilepsy centers with potential for collaborative research and training. The limitations observed were that the distribution of centers does not parallel demographic data; a national center for regulation of patient access is still preliminary; and there is a lack of specific policies for more complex cases (invasive procedures) and a lack of long-term planning for the expansion of new epilepsy centers. New challenges of this program include improvement of the current system for referrals of patients from less privileged regions and stimulation of greater cooperation between epilepsy surgery centers, patient care, and scientific cooperation.
FIGURE 4. The number of epilepsy surgeries registered by the Brazilian Epilepsy Program between 1994 and 2003.
FIGURE 5. Costs per patient of the presurgical evaluation plus surgery in reais (R$) and in U.S.$ ($) between 1994 and 2003.
The Role of Societies
The Brazilian Epilepsy League plays an important role in advising the Ministry of Health on issues regarding epilepsy and in providing education to physicians. The Brazilian Epilepsy
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League sends out videos, booklets, and books to its nearly 300 members and to medical schools. It organizes scientific meetings and courses in its various regional chapters and has an annual national scientific meeting.
The National Demonstration Project on Epilepsy in Brazil has galvanized lay epilepsy associations across the country since 2002 in a joint effort to help drive epilepsy out of the shadows in Brazil.34 The main activities are (a) the National Week of Epilepsy, which takes place in all regions of the country,22 and (b) the National Meeting of Associations and Support Group of People with Epilepsy, where the achievements and resolutions to drive epilepsy out of the shadows are discussed.19,20,23 These activities have been coordinated by the ASPE (Assistência à Saúde de Pacientes com Epilepsia) and EPI-Brasil (Federation of Associations of People with Epilepsy of Brazil) and represent an important step toward promoting an awareness of epilepsy, diminishing the associated stigma and improving the quality of life of people with epilepsy and their families.
Summary and Conclusions
The organization of the country’s medical system for epilepsy care reflects the low socioeconomic development of the nation.
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Some factors that are causing or contributing to the high rate of epilepsy in the country are the high incidence of infectious diseases, mainly parasitic (especially neurocysticercosis); the poor quality of maternal–infant care in the low socioeconomic regions (particularly in the interior of the northeast and in the misery belts around the large cities); and the high rate of traffic accidents with resulting head trauma. Improved health care, basic education, and sanitation can greatly improve these conditions. The role of nongovernmental agencies in educating the public has produced encouraging results, although their efforts are currently limited to a few segments of society.
Basic measures should be taken to bring about a more efficient health care system. With regard to patients with epilepsy, the governmental policies related to epilepsy with referential and counterreferential centers should be reformed. Low-income patients all over the country, and not just in certain areas, should receive AEDs at no cost.
The official recognition of epilepsy surgery by the Ministry of Health is helping organize an algorithm in this increasingly complex medical care field. It is crucial that the Ministry of Health includes epilepsy in the public health priorities as proposed by International League Against Epilepsy.34 In this setting, the World Health Organization, the International League Against Epilepsy, and the International Bureau for Epilepsy launched the Global Campaign Against Epilepsy in 1997.
Acknowledgments
The author thanks Dr. Américo C. Sakamoto, who provided data on the National Epilepsy Surgery Program, and Drs. Li Li Min, Ana L. Noronha, and Paula T. Fernandes for data related to the Demonstration Project in Brazil.
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