NEED FOR CURRENT COMPREHENSVE DATA ON THE COST OF EPILEPSY TO BE ADDRESSED BY EXTENSIVE FOUR-YEAR STUDY
POSTER TO BE PRESENTED AT AES CONFERENCE
BOSTON, Mass., Dec. 8, 1997 -- It's been 22 years since the last study was conducted on the cost of epilepsy. In 1975 the total cost of the disorder was estimated at $3.6 billion. Since then, various studies have produced buckshot results with estimates scattered across the board, some varying as much as $3,000 to more than $9,000 per patient. Today, with advances in treatment and rising health-care costs, there is a real need to pin down the cost burden of epilepsy on individuals and society as a whole.
Next year, there will be hard data from the most comprehensive analysis ever conducted on epilepsy's human and economic cost to society and to the 2.5 million Americans who have the disorder. Medical professionals will be the first to get a glimpse of the scope and groundbreaking methodology of the study at the 1997 Annual Meeting of the American Epilepsy Society here this week. Charles E. Begley, Ph.D., University of Texas at Houston, will present a poster at the AES annual meeting, describing how the study is being conducted. Coinvestigators in the study are John F. Annegers, Ph.D., University of Texas at Houston, Health Science Center, and Melissa Famulari, Ph.D., University of Texas at Austin, Department of Economics.
"People with epilepsy don't look very 'disabled.' That's why they are less likely to get help and more likely to need it," said Marc Dichter, M.D., Ph.D., and current AES president. "But in terms of employment, education and even social issues, they are disabled by even an occasional seizure. This study's ability to quantify this disability will give us a better appreciation of the problems and, hopefully, ideas about how to solve them."
The study has been under way since 1993 by the Epilepsy Foundation of America (EFA). Made possible through a grant from Hoechst Marion Roussel, Inc. the pharmaceutical company of Hoechst AG, it is the most comprehensive analysis ever conducted in more than 20 years of the cost burden of epilepsy on society and on people with the disorder. The goal is to publish the results of the study by late 1998 in a major peer-reviewed journal. The study is needed to provide current estimates of the overall economic burden of the disease and to assist in making cost-effectiveness and cost-benefit evaluations of new treatments.
"There is a crying need for a study that demonstrates the direct and indirect financial consequences of having epilepsy," said Paulette Maehara, chief executive officer of the EFA.
"The study will allow us to determine the dollar impact of epilepsy on American society and to better hone in on the array of factors that come into play," said Maehara. "With solid data about the cost of epilepsy to society in hand, we will be better equipped than ever to gain support from and advocate for change with health care providers, employers, insurers, public policy makers and the general public."
The study examines the cost burden of the disorder from two vantage points. Direct costs, such as diagnostics and treatment, were studied among more than 600 people with epilepsy at the Mayo Clinic in Rochester, Minn., and the Kelsey-Seybold Clinic in Houston, Tex. Indirect costs such as lost productivity to society, based upon employment, wages and other factors, were measured via an extensive questionnaire completed by more than 1,300 people with epilepsy at 18 epilepsy centers throughout the United States.
The direct-cost portion of the study is being conducted by Dr. Begley and Dr. Annegers. Dr. Famulari is conducting the indirect cost study.
The poster presentation at the AES conference will summarize methodological issues in cost-of-illness studies based on the authors' review of the current literature, experience in the epidemiology and economics fields, and involvement in the ongoing study.
Methodological questions with cost studies include what types of costs to measure, what are reliable sources of data or proxy measures for these costs, and what procedures should be used to separate epilepsy-related costs from the costs of coexisting conditions.
The new study represents the most comprehensive effort in more than 20 years to address these questions and identify direct and indirect epilepsy-related costs in the United States. The most recent comprehensive report available on the cost of epilepsy in the United States estimated the total cost of epilepsy at $3.6 billion for the year 1975. Different methodological approaches, as well as real differences in medical care patterns, have led to estimates of cost that vary from about $3,000 to more than $9,000 per patient per year. Percentage estimates of the two cost components vary greatly. In fact, previous studies have produced conflicting results. One study identified indirect costs as the greater burden at 75 percent compared to 25 percent for direct costs. A second study found the direct costs of the disease to be greater at 65 percent compared to 35 percent for indirect costs.
"One of the unique aspects of the study is that it looks at people's experiences from the onset of epilepsy over a long period of time. It also compares the spectrum of experiences from mild to severe cases," Dr. Begley said.
The American Epilepsy Society (AES) is the professional society for physicians and other health care professionals who treat or study the biological, clinical and/or psychological aspects of epilepsy. Among its members are neurologists, epileptologists, neurologic nurses, basic scientists and clinical investigators devoted to improving the quality of life for the 2.5 million Americans with seizure disorders.
The Epilepsy Foundation of America (EFA) is a charitable, nonprofit, volunteer agency which, through research, education and advocacy, serves people affected by seizures. Its goals are to prevent and cure seizure disorders, to alleviate their effects and to promote independence and optimal quality of life for people who have these disorders. Epilepsy clients throughout the United States are served by more than 100 state and local EFA affiliates and subunits.
Hoechst Marion Roussel USA is a leader in pharmaceutical-based health care, dedicated to moving beyond medicine to health-- through the discovery and delivery of prescription drugs and the provision of value-added patient support programs. The global headquarters of Hoechst Marion Roussel is in Frankfurt, Germany, and the North American headquarters is in Kansas City, Mo.
# # # # #
Contact:
Epilepsy Foundation of America
Peter Van Haverbeke, (301) 459-3700
Hoechst Marion Roussel
Julie Gladman
816/966-4274
To receive a copy of this release or any recent release via fax, call Hoechst Marion Roussel's automated news fax line at 800/556-7422, or 816/966-3434. Or, visit the Hoechst Marion Roussel U.S. Web Site at http://www.hmri.com for all recent company releases.
2979T7
References
1. Begley, Charles E.; Annegers, John F.; Lairson, David R.; Reynolds, Thomas F.; Estimating the Cost of Epilepsy in the U.S., American Society of Epilepsy abstract, No. 70773, 1997.
RSS