Rational management of epilepsy in developing countries: requirements and resources

1. Rational management of epilepsy in developing countries: requirements and resources Prof. Paulo R M de Bittencourt, MD, PhD Co-chairman, Subcommission on Therapeutic Needs in Emerging Countries ILAE Commission on Therapeutic Strategies

2. Epilepsy in Latin America • Reliable health statistics, cost evaluation studies not available • Health systems mixed, private participation • Cost similar to average developed countries • Investigation and therapy cheaper • Disease-related costs higher • Greater disability and death

3. The cost of epilepsy • Active versus inactive or remission, early costs higher • Total in UK: US$ 6000-8000 per year • Direct, related to medical care • 20-30%, in UK, USA, Australia: US$ 1000-3000 per year • May be applicable to other countries • Indonesia: direct cost is US$ 1000 per year • Indirect costs not calculated • Beran and Pachlatko, 1995

4. Population, poverty and development

5. Doubling times of world population • Developed countries 809 years • Less developed 42 years • Western, Middle Africa 20-30 years • Latin America/Caribbean upper 20s-130 years • Brazil 45 years • Mexico 36 years www.prb.org

6. Human Development Indexwww.undp.prg/hrdo • Brazil: 8th largest industrial nation: 63rd (1995), 74th (1998) • Barbados 30th • Argentina, Antigua, Barbuda, Chile, Uruguay below 40th • 40-50th: Caribbean, Latin American, East European • Mexico 55th, Cuba 56th, Venezuela 65th, Colombia 68th • Brazil with Lybia, Kazakhstan, Saudi Arabia, Thailand, Philippines, Ukraine, Georgia

7. Human Development Index • List of 174 countries • Last 24 in Africa • First African is Lybia at 72 • Almost all below India, at 128, are African

8. Human Poverty Index (HP-1) • 7 Latin American countries in 10 better • Mexico 12th, Brazil 21st, with Lybia, Philippines • Of 85 countries, 9 of 35 poorest are not African • Most Latin American and Caribbean are in the 92 countries with Medium Human Development in the 2000 report; Haiti is in Low • Of the countries listed 46 are High and 38 are Low Human Development

9. Lack of access to health care • No data for Brazil or many Latin American and Caribbean countries • Number extrapolated from mean of 97 is 25% without access to health care • May be a rough estimate

10. Rate of comsumption of richest over poorest 20% Between 16-25 most countries 5.2 in Korea 3-5 in high developement 10 in USA and Australia High development nations developing at 1-3% a year Medium are zero or just below 50% of Low are negative Distribution of wealth - Development

11. What is the social pyramid like in Latin America? (www.fao.org, 2000 report, relative to 1998) There are 863 million undernourished in the world, 729 million in developing and 34 million in developed countries • Use the undernourished to define the poor in Latin America • 20% in Central America • 30% in Caribbean • 10% in South America • Similar to 1992 (1988-90), average 13%, 59 million total

12. Depth of hunger (FAO, 2000) Per peson food deficit, in kcal • In Subsaharan Africa, in 46% of the countries the undernourished lack > 300kcal per day • In LA/Caribbean: 8% of the countries >300kcal, 65% between 200-300kcal; 25% < 200kcal • Some 15% of Latin Americans and Caribbeans will be called “The very poor” • 15% of the total population • Forest, mountains, seaside, riverside, semi-urbanized • Survive on less than US$ 70 /month

13. The poor and the wealthy in Latin America and the Caribbean • The poor are 25% of the total, families living with US$ 70-350/ month • one sallary of US$ 250 or various US$ 100 • 50% are urban • The wealthy are 1-15% of the total, more than US$ 2000 per family per month

14. The middle classes • 40-50% of the population • US$ 400-2000 per month per family • Typically US$ 10000 per year • Secondary education • industrial or service sector workers, secretaries, drivers, receptionists, health and public sector workers, school teachers, university teachers, independent professional wrokers

15. Epilepsy care: the very poor: 15% • Similar to central Africa except for war and famines; environment far less hostile • High birth and death rates; low HIV (1%) • Rare visiting physicians; X-rays; EEGs • Treatment gap universal • Phenobarbitone, irregular • Numbers increasing or decreasing?

16. Epilepsy care: the poor: 25% • Irregular visits to GPs in national health system clinics • Catchment areas of universities: widespread in Costa Rica, Uruguay, Chile and Argentina • Goodwill and influence; quality decreasing • Rule is 20min EEG, plain X-ray, CT • Epilepsy surgery in +- 10 centers: Mexico, Colombia, Chile, Argentina and Brasil • Treatment gap 30-50%; irregular in 90%; government supplied phenobarbitone, phenytoin and benzodiazepines

17. Epilepsy care: the wealthy: 1-15% • Private health plans: US$100/ person/month: 30% of Curitiba • National health rarely • International level hospitals in Bogotá, São Paulo, Buenos Aires, Mexico City • Epilepsy surgery and associated diagnosis • Treatment gap 20%; irregular in 50% (compliance)

18. Epilepsy care: the middle class: 50% • Cultural adaptation to modern life: private health plans • Between US$ 20-100/ person/month: 50% of Curitiba • national health for major problems in cheaper plans or in default • Very rapid evaluations, lots of exams • Epilepsy surgery and associated diagnosis • Treatment gap 20%; irregular in 50% (psychiatric) • benzodiazepines

19. Epilepsy care in Latin America • Epileptologists in every major city, child or adult neurologists, neurophysiologists • Residential centers do not exist? Large psychiatric institutions? Early death? • Surgery and diagnostic centers: Mexico City, Barranquilla, Santiago, Buenos Aires, São Paulo, Goiânia, Porto Alegre, Curitiba, Ribeirão Preto, Campinas • Too many in São Paulo, Curitiba, Goiânia • New drugs all available, some through public systems similar to HIV and MS

20. Widespread use of drugs to which tolerance develops Phenobarbitone, clonazepam and clobazam are cheap and tremendously easy to start Slow deveelopment of knowledge in clinical pharmacology Generics versus “similars” Kinetics of phenytoin, carbamazepine Dynamics of valproate What is irrational in Latin America and the Caribbean (AED!)

21. Low pay, large numbers, no time for history or orientation, one visit per month, useless EEGs No diagnosis of age related idiopathic epilepsies Potential failures Diagnosis of partial seizure kinetics Action Phenobarbitone in simple cases Benzos in complex, spike-wave/ absence cases The new reality: Health Management Organizations

22. Barbiturates and benzos Tonic clonic seizures Frequent status Somnolonce Low IQ Depression New drugs Polytherapy Compliance What is irrational

23. Conclusions • Region covers spectrum from Subsaharan Africa to New York • Increasing presence of private health plans in spite of lack of progress • Poor clinical pharmacology and therapeutics • Treatment gap related to social and geographic factors

24. Actions: ILAE and IBE • ILAE: politically correct diagnosis and treatment guidelines: CT, carbamazepine and valproate rather than MRI and topiramate • Develop relationship with local NGOs, raising technical awareness not related to new drugs • NGOs to relate to local manufacturers, mainstream and of generics: • Distribution of cost-effective therapies • Local clinical pharmacology