Parents with children who suffer from epilepsy can be haunted by the possibility that their child, while at school, could suffer permanent brain damage because of a lack of access to a potentially lifesaving medication.
A anti-seizure gel called Diastat has to be administered rectally within minutes of a seizure by a licensed nurse or other trained caregiver. If one isn't available or nearby, a call to 911 may not bring help fast enough to prevent lasting impairment.
Aiming to help remedy that, a Senate bill would authorize California school districts to voluntarily participate in a program training nonmedical personnel on how to administer the medication to students suffering from an epileptic attack.
But the bill has pitted teachers and nurses against parents — with both sides stressing that their main concern is for the safety of the children.
SB 161, by Republican Sen. Bob Huff of Diamond Bar, builds off of similar legislation stipulating that nonmedical personnel, such as teachers or gym coaches, can volunteer to receive emergency medical training dealing with students with acute allergies or diabetes.
Diastat is prescribed by doctors and administered by licensed caregivers rectally to a person having a seizure. Proponents of the bill want the medication to be treated like an EpiPen or Glucagon, emergency medications that are injected while a person is having an allergy attack or suffering from severe hypoglycemia.
"Diastat is gelled Valium," Huff said. "The applicator has a flexible tip, it's designed for nonmedical personnel. It comes in pre-dosed syringes put out by the pediatrician taking care of the kids."
While nurses and teachers argue that only a licensed professional should administer Diastat, parents want the assurance their child can still receive a life-saving drug, even when a nurse isn't around.
Michael Kilbourn, a legislative advocate for Legislative and Management Strategies, said the medication must be given within five minutes of an epileptic attack to prevent possibly irreparable brain damage or even death.
The drug had been used for 10 years in California school districts by registered nurses or trained nonmedical personnel. But two years ago, Kilbourn said, the Bureau of Registered Nurses said there is no authorization in law for nonmedical personnel in schools to administer Diastat.
"So nurses who had already been training nonmedical personnel could no longer train. So we decided to put authorization in law," he said. "School districts get nervous when they thought there weren't authorization codes, so many districts were afraid to go ahead and administer even if they had trained staff. Our bottom line is, we have to protect those children."
Some teachers say the bill would effectively coerce them into signing up for training that they don't feel qualified or prepared for.
"There's a feeling that those who would not volunteer, jobs could later be in jeopardy. There's a feeling there really would not be an opportunity refuse to volunteer because there could be some repercussions later. There's a feeling there could be that kind of pressure," said Sandra Jackson a spokeswoman for the California Teachers Association.
Instructions on how to administer the gel cover two large posters full of diagrams, charts, instructions and warnings, including one that says the drug should only be given by caregivers who have been trained by a physician.
"Everything in the bill is in direct opposition to FDA instructions for the drug," said Elaine Shubin, a credentialed nurse with the East Whittier City School District. "They're so misinformed, they think this is like any old drug where you can self-instruct. The whole bill is a train wreck."
There are many different types of seizures, Shubin said, and the drug should be given by someone is familiar with a child's seizure pattern. In addition, Diastat can lead to respiratory depression and the instructions specify that someone should stay with the person for at least 4 hours after the seizure to monitor breathing patterns and check for possible side effects from the treatment.
These precautions make the Diastat very different from other emergency medications, like an EpiPen or Glucagon, that are used by nonmedical personnel, she said.
"This is a dangerous precedent to have an unlicensed individual administer this medication in schools. It's a very dangerous medication, that can cause cessation of breathing and only a trained individual can make an assessment that would require this medication," said Bonnie Castillo, government relations director for the California Nurses Association.
In addition, the volatility of simultaneously handling a student suffering from a seizure while having to administer a drug rectally goes far beyond the scope of most nonmedical personnel said
Dolores Duran-Flores, a legislative advocate for the California School Employees Association.
"My members feel when your boss asks you to do something, they don't consider it voluntary. We're in a layoff environment, we're in an environment where they're furloughing staff. That's coercion," she said. "This is going too far and they need to have appropriately licensed people doing this."
Even so, many supporters of the bill point to the onslaught of support coming from school districts and medical associations who say Diastat is safe to administer with few adverse impacts.
"The entire medical community ... has all come to testify and just debunk all the false arguments that have been raised by the unions," said Scott Wetch, the father of an epileptic 7-year-old girl.
There are about 65,000 school age children in California with epilepsy, he said, and every day their parents send them to school praying that they don't receive a phone call saying their child has had a seizure.
"The thought of that parent that their child was having a seizure while a bunch of very capable adults were standing around and had the medication in their hands and are just at the mercy of 911, that thought is what chills me to the bone and every other parent who deals with a similar situation," he said.
A legislative analysis for the bill estimates that $10 million will be needed for schools to implement the measure if it passes, a cost that would cover training, development of individualized health plans and record keeping. A parent can request to have a nonmedical personnel administer the medication, and costs will vary depending on how many parents choose to exercise that option.
The bill is up for review by the Assembly appropriations committee and will be heard next week.
"From a parent's perspective, it's beyond me that the people who we trust with our children's lives every day are unwilling to step up and provide lifesaving assistance to somebody," Wetch said.