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Sacramento Bee

August 26, 2011

California bill on epilepsy medication bucks opposition from teachers, nurses

By Laurel Rosenhall

It's not often that the Democratic-controlled Legislature takes a stand against the state's Democratic Party chairman and the labor unions that are the party's main allies.

But that's what happened Thursday, when a key legislative committee voted to move forward with a bill that would let school employees who are not nurses administer epilepsy medicine to children having seizures.

"That's fantastic," said Pat DeLorenzo, an Orange County resident whose 9-year-old daughter has epilepsy. "It is frustrating to know that the whole process is even necessary for kids to be able to go to school safely."

Parents like DeLorenzo are up against a powerful lobby in the state Capitol.

Several of the state's most influential labor unions oppose Senate Bill 161, including those representing schoolteachers and nurses. On their side is the California Democratic Party, which – in an unusual move – issued a statement last week urging lawmakers to shoot down the bill by Republican Sen. Bob Huff of Diamond Bar.

"This bill takes a good idea – keeping kids safe – and turns it into a potentially dangerous nightmare," said the statement from party Chairman John Burton, former president pro tem of the Senate.

Despite Burton's opposition, the bill has advanced through several legislative phases with bipartisan support. In the Senate, 18 of 25 Democrats – and all but one Republican – voted in favor of the bill, which cleared the Assembly Appropriations Committee on Thursday. The bill now heads to the full floor for a vote.

Labor unions argue that schools should employ more nurses because it's inappropriate to ask nonmedical personnel to administer Diastat, the anti-seizure drug at the center of SB 161. Diastat is a valium gel that must be inserted into the patient's rectum with a soft-tipped syringe.

"The delicate nature of this procedure is part of (the reason we oppose the bill)," said Dolores Duran-Flores, a lobbyist for the California School Employees Association.

Her group represents school support staff, such as custodians, bus drivers, food service workers and teachers aides.

"You have to hold the child down, remove their clothing and get this syringe in their rectum while they're in the middle of a seizure," Duran-Flores said. "It's a very difficult procedure even for people who are licensed."

Supporters of the bill say the federal government has deemed Diastat a medication that can safely be administered by lay people. It would only be given to students whose doctors had previously prescribed the medication and only administered by school employees who volunteer to be trained in proper use. An analysis of the bill says training would cost $10 million.

"Another adult would get all the other kids out of the classroom, throw a blanket over the student, and inject this into the student," said Michael Kilbourn, a lobbyist who represents several school districts supporting the bill.

About 90,000 children in California have epilepsy, though the number who have prescriptions for Diastat is much smaller, Kilbourn said.

He said nonmedical school employees had been administering Diastat with no problem for nearly 10 years until the state's Board of Registered Nursing called a halt to the practice about two years ago, saying state law only allows nurses to administer the drug.

Stephanie Roberson, a lobbyist for the California Nurses Association, said bus drivers and secretaries shouldn't be asked to make the medical decisions necessary when giving the drug. She said parents of epileptic kids have the right to demand a nurse at their school as part of their special education plan.

"If a kid has speech problems, they get a speech therapist," Roberson said. "Schools have the obligation to give kids what they deserve under the law."

Parents of epileptic children say their kids' lives are at risk because nurses have drawn that line.

"Wouldn't it be great if we lived in a world where there were nurses available to be on campus every day? But we're not in that world," said Amanda Keays, an Orange County mother whose daughter has epilepsy.

She said her daughter's school has a nurse on campus one day a week.

"If she were to have a prolonged seizure at school on any of those other four days of the week, waiting for an ambulance is not an option," Keays said. "There are potentially life-threatening consequences that could stem from that."

After Thursday's vote, Huff said he was pleased his bill was moving along with bipartisan support.

"I know it has some very high-powered opposition, but it just has a very righteous cause," Huff said.

"This is an issue that's not a partisan issue. It shouldn't be a partisan issue, because epilepsy has no regard for party."