Shedding light on epilepsy: advocacy groups are pushing to raise awareness about epilepsy and encourage legislatures to make it a more integral part of public health programs.

Jack Thoman is in his late 40s and lives in the western part of the United States. He is a director at a high-end computer company. He's married and has a child.

Jack was diagnosed with epilepsy when he was 21, after being involved in two car accidents. The second wreck--which led to his finally being diagnosed--killed two people and left another person paralyzed. Jack says he should have been diagnosed years before the tragedy occurred, or at least the first time he was in an accident. But doctors and even his family ignored the obvious.

"If doctors and others had been a little bit more open minded, they could have prevented the accident," he says quietly.

Even after he was diagnosed, family members were reluctant to discuss his condition openly, Thoman says. "Nothing against my parents, but after I was diagnosed, they said, 'You shouldn't talk about it. Yes, you have it, but let's just put it in a corner' was more or less what was said."

Mary Jeanne Hubbell is 28 years old and lives in Washington, D.C. She and her husband, Al, welcomed their first child, Aidan, into the world this past January. Mary Jeanne, who grew up in Delaware, was diagnosed with epilepsy when she was only about 3 years old. Her mother, who also has epilepsy, recognized the signs of the disease and "took the necessary steps," as Hubbell describes it.

When she was a teenager and somewhat rebellious, she wasn't good about taking her medication. Sometimes it made her so nauseous, she refused to take it. As a result, she had numerous seizures and would wake up later with bruises and, sometimes, a split lip.

By the end of her high school years, her doctor explained to her that all the seizures she'd had were sim-ilar to hits taken by a box-er. "He said, 'I think you probably have about 10 seizures left in you before you do permanent damage to your brain,'" Hubbell says.

Jack and Mary Jeanne are two of the 2.3 million Americans living with epilepsy, a chronic medical condition produced by temporary changes in the brain's electrical function. The changes cause recurrent seizures, which affect a person's awareness, movement or sense of touch. Seizures range from convulsions to a brief loss of awareness or confused behavior and changes in sensation, according to the Epilepsy Foundation of America, a Maryland-based nonprofit group dedicated to research, education, advocacy and services for people with seizure disorders and their families.

NEW LEGISLATIVE ISSUE

The foundation, in conjunction with the U.S. Centers for Disease Control and Prevention (CDC), is working hard to raise awareness about epilepsy and to make it a more integral part of public health programs in the states. As a legislative issue, epilepsy is still somewhat new. The first national conference addressing epilepsy and public health was held five years ago in 1997.

"Epilepsy as a public health issue has not been addressed for a long time, despite the fact it affects 1 percent of the population. And there are plenty of conditions that have a smaller impact that are being addressed," says the foundation's Sandy Finucane, vice president of government affairs. Over the past 10 years, however, the CDC's epilepsy program has grown dramatically. The second national conference on public health and epilepsy--a followup to the 1997 meeting--is slated for July.

Both the foundation and CDC have stepped up efforts to work with state legislators. The CDC's Patricia Price, coordinator and medical officer of the epilepsy program, says the decision to work with state lawmakers came directly from affiliated programs in the states. "Our working partners felt legislators don't have at their fingertips adequate and accurate material about epilepsy and issues that face people with epilepsy," she says.

The foundation's Finucane says officials have also come to recognize how integral states are in establishing appropriate and adequate health care for people with epilepsy. "We would like to see that every state has a public health program on epilepsy so people can get appropriate care and so there's a better understanding of the issue for things such as driving laws," she adds.

PUBLIC HEALTH PROGRAMS

Thirteen states already have some type of funding to incorporate epilepsy into public health programs. Florida and Texas lead the nation in terms of the extent of the programs, and New York's system is also noteworthy.

The Sunshine State uses proceeds from its seat belt law to pay for its generous program, which includes anti-epileptic drugs for low-income Floridians. To be eligible, a person must be a state resident, have a diagnosis of epilepsy, meet certain income requirements and complete eligibility screening on an annual basis.

Texas runs its statewide program with a $936,850 appropriation, providing grants to state agencies through a request-for-proposal process. The program reaches residents in nearly 200 of the 256 counties in the Lone Star State. Nurses, neurologists and other providers served 6,700 patients in clinics throughout the state in FY 2002, says Betty Flores, program director.

Dallas area public health workers help the homeless, meeting patients in the building where they get their meals. Nurses make sure they get their medication, says Flores, and help them fill out forms for drug companies' indigent medication programs. "Each drug company has different rules. You need expertise in filling out the forms, and we make sure renewals are processed," says Flores. State officials have estimated that drug companies are footing the bill for $530,572 in medication for low-income patients throughout the state.

Elsewhere in the state, epilepsy foundation workers have teamed up with the University of Texas-Galveston to provide telemedicine services at a clinic. Similar to video conferencing, nurses consult with doctors and neurologists from afar. "Many clients with epilepsy cannot drive, and this service is provided in the community so they don't have to drive to Galveston," explains Flares.

Texas Senator Frank Madla helped establish the epilepsy program through legislation in 1981. He credits the lobbying skills of a local nurse for getting the ball rolling. "She told me about the high incidence of epilepsy among Hispanics, a situation that affected most of my district. Basically, the measure was introduced as a result of an individual bringing it to the Legislature," he says.

Madla says that neatly 20 years ago, he, too, was diagnosed with epilepsy, a fact that also influenced his decision to introduce the measure. "At that time, I was fortunate because I was able to get the appropriate medication through my private insurance plan. Had I not been able to do that, I don't know what I would have done," he says. Today, the lawmaker says he is "one of the fortunate ones," since he's been off medication with no recurrences for a number of years.

Given the tight budget situation in Texas, the epilepsy program has been slated for the chopping block. Flores says she's optimistic, however, that the funding will not be cut. It provides direct medical services, she says, and officials are typically reluctant to eliminate such a program. Madla says it would be a shame if the program were cut. "The compelling argument is the fact that you have adults who simply aren't able to function without some care and medication. The state would be foolish not to fund the program," he says.

But elsewhere, programs have already been cut with tragic consequences. In Oregon, 36-year-old Douglas Schmidt, who had recently lost pharmaceutical benefits through the Oregon Health Plan, suffered a seizure after his supply of medication ran out. In March, he was unconscious and in critical condition at a Portland Hospital.

Representative Ben Westlund, who chairs the committee charged with restructuring the state medical plan, said he was saddened but not surprised by what happened. "When you've got a budget that's as decimated as ours-we're down 18 percent--there is no way that very vital services in areas such as education, social services and public safety will not be reduced or limited," Westlund said.

The lawmaker also said what occurred was a lesson to everyone involved that cutting essential prescription drug benefits is not the wisest move. "It makes no sense not to provide pharmaceutical benefits. This man's medications cost $400 a month. Now he's in a hospital and it costs $4,000 a day," he said.

THE BUDGET BIND

Grim budget situations in nearly all the states are likely to prevent any new epilepsy-related legislation from moving forward. But New Jersey Assemblywoman Arline Friscia hopes colleagues will approve a measure establishing regional programs to educate parents, school staff, public officials, community leaders and others about epilepsy in children--touching on everything from the special needs of the population to early detection and treatment.

Friscia, who serves as assistant majority whip and chairs the Labor Committee, says she first learned about the concern for younger people with epilepsy a few years ago. "One of my constituents has a granddaughter with epilepsy. I met with people and found out all the problems people encountered in finding treatment, and how parents want teachers to understand what to do if kids have seizures," Friscia says.

As a former elementary and junior high school teacher, Friscia says she knows first-hand how important it is for the staff in any school to be aware of epilepsy. "We need some type of education program in place that is taught by nurses, who would then deliver the information to children and staff," she says. "Parents also have to be educated on how to deal with their own children. And they need to be taught the symptoms of epilepsy because many parents don't understand what is happening when the symptoms first appear," she adds.

Friscia says despite the tough fiscal times, she would encourage colleagues in other states to explore a measure similar to what she has constructed. "It's a starting point, if nothing else. Children experience a great deal of emotional problems that go along with having epilepsy. They think they're different, and it's very important if we can make their lives a bit easier. Especially kids who have seizures in school. They're embarrassed, and that's really sad," she says.

RELATED ARTICLE: THE DRIVING DILEMMA

Forty-one states have medical advisory boards to help licensing agencies identify mental or physical disorders that affect the ability of a person to drive safely.

California, Delaware, Nevada, New Jersey, Oregon and Pennsylvania have mandatory physician reporting requirements. Any doctor treating a person with epilepsy must report that information to the Department of Motor Vehicles and, in some instances, the Department of Health.

Many people with epilepsy do not drive either because of their own safety or because they do not meet a state's requirements. Some states allow people to apply for licenses after a specified seizure-free period (typically a year).

A variety of laws dealing with driving have been adopted in recent years. Louisiana passed a measure (SR 49) in 2001 that called for a feasibility study and new regulations for drivers who have epileptic seizures. Nevada enacted a law (SB 260) in 2001 that requires a different background color on driver's licenses issued to insulin-dependent diabetics and people with epilepsy.

Oregon is in the midst of establishing a program that expands regulation of drivers who develop medical impairments that adversely affect their safety and the safety of others. The change stems from a 2001 legislative directive, which called for the Department of Motor Vehicles to assemble a group of medical experts to determine what impairments can affect driving safety. Oregon officials say the program is a "first in the nation" because the regulations are based on impairments, not age.

The Epilepsy Foundation of America lobbies against mandatory reporting requirements. "Our experience is people won't go to their doctor and say they're having seizures if the driving laws are too restrictive," says Sandy Finucane. The foundation would prefer to see "more medically enlightened, less restrictive driving laws."

Not everyone agrees with that line of thought. lack Thoman, who has had two accidents, the second one in which there were two people killed, says doctors should report patients to the state and supports revocation of licenses. "Doctors should report it. And once it's under control for a certain period of time, you should be able to drive. I think it should be standard across the board," he says.

In response to a series of serious, and in some cases fatal, automobile accidents in Maryland, Pennsylvania and Florida over the past two years, the National Transportation Safety Board (NTSB) conducted a hearing in March to discuss what officials refer to as the medical oversight of noncommercial drivers.

Medical and policy experts from across the country, including representatives from the National Conference of State Legislatures, AARP, the Epilepsy Foundation of America and medical advisory boards in Maryland, North Carolina and Utah shared their views on the effectiveness of state oversight of licensed drivers who suffer from potentially impairing medical conditions.

A report and related recommendations for states should be issued within the next year. For the latest, go to www.ntsb.gov or call Jim Reed in NCSL's Denver office, [phone].

TARGET ON TEENS

While reaching out to groups including the elderly and Native Americans, health officials also are targeting teens in public education and epilepsy-awareness campaigns. And they have the help, in some cases, of celebrities, such as the pop music group 'N Sync and TV/film star Ashton Kutcher of "That 70's Show" fame.

The Centers for Disease Control's Patricia Price says it is important to reach young adults with epilepsy "because they are such a vulnerable population in terms of other issues they're facing--dating, driving and making decisions about future education."

Known as "Entitled To Respect," the teen-centric program has been shaped by talking directly with younger adults who say they want other people to understand epilepsy. They also want information available at schools and in other group settings. Teenagers say that information and encouragement would have been helpful when they were first diagnosed with epilepsy.

Sandy Finucane of the Epilepsy Foundation of America says addressing things like stigma and attitude surrounding epilepsy early in life will make it easier to combat and counter negative stereotypes about individuals with epilepsy.

Unflattering and even unkind images of people with epilepsy still pop up, even in mainstream movies. The foundation posted a warning on its Web site Jan. 27, informing parents of kids with epilepsy that the Warner Brothers' movie Kangaroo Jack contained two scenes that might be painful to youngsters. Audience laughter was generated when one character refers to another as "an epileptic."

Finucane said her group was alerted to the movie by parents visiting the foundation Web site. "We have a parents' forum on our Web site. Parents said they were at the movie with their child, and the child was cringing in his seat while the audience was laughing at the movie," she said.

The foundation has protested the movie's ridicule of epilepsy and seizures to Kangaroo Jack's producers and urged removal of the term "epileptic" in future DVD/VHS and TV distribution.

Mary Guiden, a fonner NCSL writer, is now freelancing from her home in Seattle, Wash. Jack Thoman's name has been changed to protect his identity.