Jobs vs. brain damage: Epilepsy bill sparks fight

In October 2008, over two dozen people sat in a K Street conference room to talk about a potential bill that would allow non-medical school employees to be trained to administer Diastat. This is a gel form of Valium that, when delivered rectally, can stop a major epileptic seizure.

The parents of epileptic victims said that in many school districts around the state, teachers and other personnel have been successfully administering the drug for years. But there has been was no coherent statewide policy. Those present worked mainly for healthcare advocacy groups, or for unions representing teachers and nurses.

Then, according to several people who were present at the gathering in the offices of the Chamber of Commerce, the California Teachers Association’s legislative advocate Toni Trigueiro started talking about how the real issue was jobs.

“She said it was a matter of making sure these children receive this medication from one entity only, school nurses, and that we should be helping to push hiring of more school nurses,” according to Ann Kinkor, a former speech therapist now with the Epilepsy Foundation and the mother of three adult sons with epilepsy. “We knew then, as we know now, that there wasn’t money to hire school nurses.”

Brad Morrison, a consultant hired to help facilitate the meeting, tells a similar story.

“She [Trigueiro] set a tone that she wasn’t really in a collaborative mood,” he said. “It was clear we were not going to come to a solution that day. People were falling back into their positions.”

“There have been no stakeholder meetings since then,” Trigueiro said, claiming it was the other side that cut off talks.

The thorny, unusual issue has taken traditional allies, labor groups and children’s health care advocates, and turned them into enemies.

But both sides agree on many of the same facts — for instance, that they would prefer that the state has enough money to hire a nurse in every single school. Currently, fewer than half of California schools have a full-time nurse.

And the legislator now carrying a bill that would allow non-medical personnel to administer Diastat is a Republican — and many of the parents blame Republicans for forcing the education and health care cuts they say eliminated funds to hire school nurses.

But Sen. Bob Huff, R-Glendora, and others say that even if there were a school nurse at every school, the bill would still be needed. The goal of the drug is to stop seizures quickly, within the first five minutes. In many schools, the nurse could be on the other side of campus and further away than that.

Students carry a pre-prepared dose specific to their body weight in a plastic syringe with a soft rubber nipple, along with a blanket to cover them from being seen by bystanders. The federal Food and Drug Administration approved Diastat administration by non-medical personnel in 2005. This decision cited research showing that the drug was effective 85 percent of the time, and hospitalizations dropped by two-thirds among epileptics carrying the drug with them in situations where there was someone around trained to administer it.

The California Medical Association is among the groups supporting SB 161, and the California School Nurses Organization is one of the leading groups opposing it.

Estimates show that about 64,000 kids in California suffer from epilepsy. About 16,000 have the severe form that would warrant a Diastat prescription – although CTA disputes the figures.

Many of the same people met the following February. But this time, no one from the CTA was present, and there were fewer nursing representatives in the room.

By then, there were other wheels turning.

That September, Geri Nibbs, a nursing education consultant with the Board of Registered Nursing, sent out a letter stating that the “controversial” administration of Diastat “is a nursing function that may not be performed by unlicensed personnel unless expressly authorized by statute.”

According to Kinkor and others, this effectively overturned a decade of successful Diastat administration by school personnel that resulted in several cases in which injury or death was avoided.

The next March, even more definitive word came down from the legal department of the Department of Consumer Affairs (DCA), which oversees the nursing board. In a six-page memo, supervising senior counsel Don Chang took apart the arguments for letting teachers or others administer Diastat point by point. He reiterated that, barring “a modification of the law,” giving Diastat “constitutes the practice of nursing,” then argued that a nurse who teaches someone else how to give the drug may be subject “to discipline for aiding and abetting the unlicensed practice of nursing.”

The memo goes on to state that those giving Diastat wouldn’t be subject to protections offered under the state’s good Samaritan laws, and warns “the possibility of piercing the rectal cavity is high.” Finally, Chang’s memo states that the Nursing Practices Act (NPA) would trump seemingly contradictory language in the California Education Code, saying that giving the drug to someone having a seizure “does not fall within any of the exemptions from the NPA.”

One of those exemptions is “in case of an emergency,” and that seems to be the key policy disagreement between the camps. Chang’s letter states only that this definition “includes an epidemic or public disaster.”

By then, Huff was already trying to deliver “a modification in state law.” His SB 1051 — essentially the same bill as the current SB 161, minus some technical amendments — was introduced in January, 2010. It was sponsored by the Orange County Unified School District, also a major supporter of SB 161. It got stuck in the Senate Health Committee, where that April seven out of nine senators didn’t even cast a vote on it. In May it died in the Senate Appropriations Committee after Senate Pro Tem Darrell Steinberg, D-Sacramento, and others gave passionate floor speeches against it.

In that debate, Huff delivered a different definition of “emergency,” stating, “Without it, they can have brain damage or death.” He added, “The bill is voluntary. No one is coerced.”  
This time around, Steinberg was one of 32 Senators whose yes votes helped SB 161 get out of the Senate on June 2. So was Sen. Christine Kehoe, D-San Diego, who said Huff’s previous bill was “lowering the standards” by “allowing what should be done by medical professionals to be done by volunteers.”

Supporters also point to medical and legal opinions they say show Diastat is safe. In 2007, School and College Legal Services of California delivered an opinion that found “the ‘emergency’ exception would appear to apply to a student who is suffering a seizure” and that Diastat administration is a “routine” procedure that poses “little potential harm to the student.”

In 2008, the University of California, Berkeley School of Public Health issued a 47-page case study on medical care in schools. It found that the lack of nurses in schools was a major problem, but recommended that non-medical personnel be trained to perform some procedures, as long as there was no coercion.

The CTA and CNA continue to lobby against the bill. Sources who have been following SB 161 say that at least one of the Democratic Assembly members who voted for the bill so far in committee is now wavering on voting for it on the Assembly floor.

The bill&rsquo
;s supporters say opponents have failed to show instances of the potential harm they cite, such as breathing problems or perforated rectums. Kankor said that some of the amendments the opponents have pushed, such as a mandatory 911 call, would actually make things worse. For instance, she said, in one of the small number of cases where they cite depressed breathing, the problem was caused when paramedics injected more valium into the student, not by the original dose of Diastat. She said the Diastat dose is calibrated so that patients can withstand three doses without a fear of respiratory problems.

“Valium does suppress breathing,” said Stephanie Roberson, a lobbyist with the California Nurses Association (CNA), which does not represent school nurses. “There can be synergistic effects with other drugs. Whoever is administering this medication needs to know all that.”

“We really believe that everybody should have access to the appropriate trained medical staff,” said Dean Vogel, president of the California Teachers Association.

This kind of talk bothers Scott Wetch, a lobbyist who usually represents labor groups. The parent of a 7-year-old epileptic daughter with a Diastat prescription, he has become a leading pro bono advocate for the bill. He also said that life-threatening overdoses of the drug are basically unheard of.

“You know what the training is?” Wetch said. “You talk to the pharmacist for two minutes. It’s not rocket science. Just give it to them. There’s no downside.”

The opponents also appear to have played up one discomforting aspect of the procedure — that it involves the rectum of an unconscious student. A July 6 Capitol press conference by opponents featured a two-foot high blowup of the Diastat directions, featuring several panels of drawn posteriors.  

But Naldo Cabanillas, whose now 22-year-old daughter was disabled by a grand mal seizure when she was six, scoffed at this objection.

“If someone is going to see my daughter’s private parts but save her life, I’m going to choose to save her life, or save her from a brain injury,” he said. “Seizures can damage your brain permanently.”

Much of the debate seems to get back to overworked teachers who want to make sure they’re not coerced into “volunteering,” something she said has been made worse by budget cuts and the otherwise-desirable practice of “mainstreaming” students with serious disabilities and medical issues.

“Students are coming to school with more and more medically fragile conditions,” said K.C. Walsh, a special education teacher in San Jose. “Imposing this on teachers who are already overburdened is not the correct solution.”