( CNN ) -- An estimated one percent of adults have active epilepsy , and many of them are getting insufficient treatment , according to a 19-state survey released Thursday . `` This is the first time that we actually have data from multiple states , '' said Rosemarie Kobau , lead author of the Centers for Disease Control and Prevention study , in a telephone interview . `` What we learned is that , among adults with active epilepsy , more than a third of them reported not seeing a specialist for their epilepsy , and that 's really unacceptable . '' A follow-up survey is planned to determine why so many people with seizure disorders said they had not seen a specialist in the past year , Kobau said . `` This is a highly specialized field , '' said Eric Hargis , the president and CEO of the Epilepsy Foundation , which collaborated with the authors of the study . `` It 's not possible to get state-of-the-art care '' for the disorder from primary care doctors . One in six ( 16.1 percent ) adults with active epilepsy with recent seizures said they were not taking their medication and two-thirds ( 65.1 percent ) said they had had more than one seizure during the prior month . More than a fifth ( 20.4 percent ) said cost was a barrier to seeking care from their doctor . Access to high-quality care is key to quality of life , Kobau said . People with recurrent seizures face substantial impairments in their daily activities ; many are not allowed to drive and , as a result , depend on public transportation . In some areas , particularly rural ones , that can present a barrier to full participation in life , she said . That 's not all . In addition to carrying stigma , people with epilepsy were more likely to live in households with the lowest annual incomes and to report being unemployed and unable to work . According to the 2005 findings , 1.65 percent of the population said they had been told by a doctor that they had epilepsy or a seizure disorder , the report said . Half of that group ( 0.84 percent ) said they had active epilepsy -- defined as having had one or more seizures during the prior three months or currently taking medication . If the findings translate to the general population , that means a stadium filled with 60,000 people would contain 480 people with active epilepsy , Kobau noted , adding , `` Epilepsy is not rare . '' But that view was disputed by Dr. James King , a family physician in Selmer , Tennessee , and president of the American Association of Family Physicians . `` There are patients that can be managed fairly simply with seizure disorder , '' he said in a telephone interview . `` In my own personal practice , I 'd say that I can manage at least half , if not more , of the patients that have seizure disorder . '' Many of the others are able to get by with just a one-time visit to a neurologist , said King , whose practice is 50 miles from the nearest neurologist , and 100 miles from the nearest neurologist who accepts Medicaid , the government program for the poor . `` There 's only a handful of patients that are managed in my area by the neurologist . '' He said financial barriers -- from insurance to the cost of anti-seizure medication -- are a bigger problem . `` If you ca n't afford to buy it -- which is what I run into with a lot of the seizure medicine -- it does n't really matter '' if patients see a neurologist or a family physician , he said . Many patients , forced to choose between paying their light bill or taking their anti-seizure medication , choose the former , King said . Epilepsy is a condition in which the normal activity of the brain malfunctions , causing recurrent seizures -- electrical storms in the brain -- that can be characterized by a range of symptoms , including sudden change in awareness , movement or sensation . Each year , about 200,000 people in the United States are diagnosed with the disease , as was Supreme Court Chief Justice John Roberts after he suffered a seizure last year at his Maine vacation home . `` Many people with epilepsy do lead normal , productive lives despite the hardship of having this disorder , '' Kobau said . The study , conducted by the federal government and published in the CDC 's Morbidity and Mortality Weekly Report , estimates that 2.7 million people in the United States have epilepsy , and that it costs some $ 15.5 billion in medical care and lost or reduced earnings or productivity each year . Hargis said the incidence of the disorder is expected to climb among veterans returning from Iraq or Afghanistan , where head injuries are common . `` When you have a head injury , it 's common for epilepsy to develop after a gestational period -- it could be a couple of months or it could be years , '' he said . And the aging population is also expected to boost the incidence of epilepsy . Conditions of aging , such as stroke and Alzheimer 's Disease , are also associated with a higher incidence of epilepsy . The study was based on data from more than 120,000 adults in the Behavioral Risk Factor Surveillance System .
One in six adults with epilepsy who had recent seizures were not on medication . Epilepsy is a condition in which the normal activity of the brain malfunctions . The cause for this can be genetic, neurological or environmental.