Magazine article The Exceptional Parent

Epilepsy Economics

Magazine article The Exceptional Parent

Epilepsy Economics

Article excerpt

The cost of epilepsy is direct and indirect, financial and human

Epilepsy poses many burdens for individuals and their families, including economic ones. While families living with epilepsy have long understood this, public policy makers are just beginning to pay attention to the economic burdens imposed by chronic illnesses such as epilepsy.

It has become increasingly apparent that there are limited resources for health care and that these resources are not equally distributed among industrialized and developing countries, and among urban and rural areas of the United States. Understanding the cost of a chronic illness such as epilepsy is needed as we continue healthcare reform efforts and advocate for increased research for prevention, treatment, and cure of epilepsy. Additionally, expressing the burden of epilepsy in economic terms aids public awareness of epilepsy as a public health problem worthy of attention.

The cost of epilepsy

Measuring the cost of epilepsy is difficult due to the diversity of the disorder. The Epilepsy Foundation's "A Report to the Nation" (released in 1999) conservatively estimates the cost of epilepsy in the US in 1995 to have been 12.5 billion dollars.

This unique study tracked direct medical care costs of 609 people over time (up to six years) and separated out costs of having seizures due to epilepsy from the costs of other conditions. Using these direct medical costs, the investigators were able to estimate actually how many people are burdened by seizures and what the costs are for them each year and over a lifetime.

Another part of the study estimated the indirect costs of epilepsy. These include the impact of seizures on the job front in terms of not being able to work, working at lower wage jobs, absences due to seizures, and impact of premature death. It also included effects on people's productivity at home, such as the ability to care for their home and their families.

This study suggests that epilepsy is not a significant problem for many people--up to 60 percent of the people diagnosed with a seizure disorder were able to achieve control of their seizures quickly. The disorder went away over time or was easily controlled with medical therapy. However, approximately 575,000 people in the United States continue to have active seizures. Some people's lives are devastated by the disorder. Those with the most difficulty in controlling epilepsy incur the most costs. This variability confirms that epilepsy is not one, but truly a spectrum of disorders with different seizure types, syndromes, and outlook for the future.

Likely costs

The costs of medical care for people with epilepsy can range from occasional physician checkups, medications, and blood tests for children with well-controlled seizures, to more extensive and frequent in-patient and out-patient evaluations, therapies, and supports. Regardless of the disorder severity, costs associated with the initial diagnostic work-up, on-going neurological evaluations, and drugs should be expected. All these are necessary aspects of care for all children.

For children with uncontrolled seizures or who have multiple disabilities, the evaluations and treatment are more complex and costly. Examples of medical costs include: diagnostic testing (e.g., MRI, PET, or Spect scans), EEG testing, medications to control seizures and address side effects of treatment, nutritional support for the ketogenic diet, surgical treatment, vagus nerve stimulation, neuropsychological testing, mental health services, emergency transportation, dental care, and treatment of injuries.

Other health-related, but nonmedical services are considered direct costs for treatment of epilepsy, as well. These may include services such as rehabilitation therapies, vocational rehabilitation, special education, respite care, transportation services, home safety modifications, medical equipment, and social services. …

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