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BY DAVID PARKER SPECIAL TO THE SACRAMENTO BEE OCTOBER 30, 2024 11:06 AM

In his second inaugural address, Gov. Gavin Newsom committed California to righting historical wrongs, and to “confront our errors with humility and conviction.” But he just missed an easy opportunity to end nearly seven decades of discrimination by vetoing the repeal of an outdated 1957 law originally established to enforce California’s prohibition on drivers’ licenses being issued to anyone “who is insane or feeble-minded or an idiot, imbecile or epileptic.”

Senate Bill 357, authored by Sen. Anthony Portantino, D-Burbank, would have finally ended California’s shameful decades-old policy that all adults and teenagers with epilepsy must be reported to the government. The failure of the legislation revealed how hard it can be to correct the mistakes of the past, especially on lesser-known issues.

It has been 30 years since the American Academy of Neurology, American Epilepsy Society and Epilepsy Foundation of America issued a landmark statement that “there was unanimous agreement that physicians should not be required to report their patients” to the Department of Motor Vehicles. Yet California remains one of only six states that requires doctors to report patients with epilepsy to their local health office, which then shares the patient’s name and diagnosis with the DMV — whether they intend to drive or not.

SB 357 had a simple goal of adopting the longstanding national consensus and ending mandatory reporting of people with epilepsy. The bill would have brought California in line with most of the rest of the country in giving doctors the authority to report any patient who might be unsafe to drive, rather than mandating that absolutely everyone diagnosed with epilepsy be reported to the government.

To promote public understanding of the shift in policy, SB 357 also directed the DMV to produce a data-driven report on drivers with epilepsy, ensuring that future discussions about the issue would be based in evidence, not preconceived notions. The bill also included sensible liability provisions, so doctors could have open conversations with their patients with epilepsy, preserving a critical relationship often undermined by the current mandatory reporting regime.

The California Legislature unanimously passed SB 357. Newsom said no.

In his veto message Newsom stressed the need “to maintain proper safeguards for public safety.” But there’s no compelling evidence that the discriminatory policy the veto maintains does anything to promote public safety.

One study has estimated that .01% of accidents were caused by people with epilepsy — that’s one in ten thousand. Epilepsy remains subject to mandatory reporting simply because it’s always been subject to mandatory reporting, despite what the data shows.

There’s also no evidence that mandatory reporting makes a state’s roads any safer. What the data does show is that fear of being reported to the government makes people with epilepsy afraid to be completely open and honest with their physicians.

The bill Newsom vetoed would not have imposed any new limits on California’s ability to keep unsafe drivers off the road. In fact, the bill would have maintained the DMV’s total authority to withhold a license from a driver they deemed unsafe. So when Newsom, who has made “California for All” a motto of his administration, talks about epilepsy in terms of “public safety,” all he’s doing is endorsing an ancient prejudice that people with epilepsy are inherently dangerous.

In that same inaugural speech, Newsom vowed that “California commits itself to the process of getting it right for the next generation.” I hope so. I don’t want my 10-year-old daughter, Vivian, to grow up in a world where she’s made to feel ashamed of her epilepsy.

A lot has changed for people with epilepsy since 1957, including major advances in the treatment of seizures. Epilepsy is not uncommon, affecting 1 in 26 people. Ignorance about epilepsy, however, remains widespread. We will never move past old prejudices if we don’t change the laws built upon them.

Newsom is right when he calls California “a state of dreamers and doers.” That’s why we will bring this repeal back to Sacramento every year until he joins us, in his own words, in “paving the way for rights and freedom to prevail.” David Parker is on the board of Epilepsy Foundation Los Angeles, which sponsored Senate Bill 357.

Read more at: https://www.sacbee.com/opinion/op-ed/article294679319.html#storylink=cpy

David Parker is on the board of Epilepsy Foundation Los Angeles, which sponsored Senate Bill 357.

For Immediate Release: April 26, 2023
Contact: Lerna Shirinian, (818) 409-0400

Senator Portantino Bill Protecting Drivers with Epilepsy Approved by Senate Judiciary Committee

Sacramento, California – Senate Bill 357, authored by Senator Anthony J. Portantino (D – Burbank) was approved by the Senate Judiciary Committee. The bill gives doctors the discretion to report personal conditions they believe will impair a patient’s ability to drive. It further removes language that discriminates against specific conditions, including epilepsy.

“The discriminatory practice of mandatory reporting in California needs to be addressed,” stated Senator Portantino. “SB 357 protects drivers with epilepsy by improving the patient-physician relationship and allows individuals affected by epilepsy to seek the care they need without fear of losing their driving licenses.”

Epilepsy is the fourth-most common neurological disorder, affecting more than 3.4 million Americans and more than 425,000 Californians. Yet here in California, a 1957  state law discriminates against drivers with epilepsy and other conditions by requiring physicians to automatically report these drivers to the Department of Motor Vehicles. Research has shown that these requirements often result in patients withholding crucial information from their physicians and not seeking the care they need. This is due to fear of losing their right to drive.  When a person with epilepsy withholds critical information from their doctor, they jeopardize their access to appropriate care, risking an increase of seizure activity or even a loss of seizure control.

SB 357 will:

• Give doctors the discretion to report conditions they believe will impair a patient’s ability to drive, by removing language that discriminates against specific conditions, including epilepsy;
• Allow but not require doctors to make such reports;
• Protect the doctor-patient relationship by providing immunity for physician for either reporting or not reporting patients.

SB 357 will also require the California Department of Motor Vehicles (DMV) to publish a report by 2027 on the differences in patterns of reporting and crash rates under a voluntary reporting system. The bill will add a sunset on the voluntary reporting system for 2029.

“We thank Senator Portantino for authoring this important legislation that will protect the doctor-patient relationship, improve access to care for people with epilepsy and end decades of discrimination against the more than 425,000 Californians living with epilepsy.” said Rebekkah Halliwell, Executive Director of Epilepsy Foundation Los Angeles. “Based on an outdated law from 1957, California requires doctors to report all patients with epilepsy to the DMV, but research has shown that mandatory reporting requirements may lead people with epilepsy to withhold crucial information from their doctors, risking an increase in seizures, which can lead to injury and even death. People living with epilepsy should be able to seek care from their doctors without fear of losing their driver’s licenses. We are hopeful that this important measure, which will still allow doctors to identify any patient they believe might not be able to drive safely, will continue to move through the legislative process.”

 

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The Senate Transportation Committee on Wednesday approved Senate Bill 357, which would give doctors the discretion to report conditions they believe will impair a patient’s ability to drive. The bill, introduced by Sen. Anthony J. Portantino, D-Burbank, further eliminates language that portrays certain conditions, including epilepsy.

Portantino said the bill is necessary to protect the doctor-patient relationship and to ensure that drivers with epilepsy are not discriminated against.

“It’s time to remove the discriminatory practice of mandatory reporting in California,” said Senator Portantino. “SB 357 protects drivers with epilepsy by improving the patient-physician relationship and allows individuals affected by epilepsy to seek the care they need without fear of losing their driving licenses.”

According to the Epilepsy Foundation Los Angeles, California’s state law from 1957 discriminates against drivers with epilepsy and other conditions by requiring physicians to automatically report these drivers to the Department of Motor Vehicles. Research has shown that these requirements often result in patients withholding crucial information from their physicians and not seeking the care they need.

Epilepsy is the fourth-most common neurological disorder in America, affecting more than 3.4 million individuals nationwide and more than 425,000 Californians. When individuals with epilepsy withhold crucial information from their physicians, they put their access to appropriate care at risk, potentially increasing seizure activity or losing seizure control.

SB 357 would give doctors the option to report conditions they believe will impair a patient’s ability to drive, without discriminating against specific conditions, including epilepsy, Portantino said in a statement.

The bill would allow but not require doctors to make such reports and will provide immunity for physicians for either reporting or not reporting patients. The bill would also require the California Department of Motor Vehicles to publish a report by 2027 on the differences in patterns of reporting and crash rates under a voluntary reporting system, and add a sunset on the voluntary reporting system for 2029.

Rebekkah Halliwell, Executive Director of Epilepsy Foundation Los Angeles, expressed appreciation for Senator Portantino for authoring this critical legislation that will protect the doctor-patient relationship, improve access to care for people with epilepsy, and help end what was called decades of discrimination against the more than 425,000 Californians living with epilepsy.

Senator Portantino’s Senate Bill 301, which aims to create a financial rebate program to convert gas and diesel-powered motor vehicles into zero-emissions-vehicles (ZEVs), also passed the Senate Transportation Committee.

Source: Pasadena Now, Published on Thursday, April 13, 2023 | 5:50 am

 

FOR IMMEDIATE RELEASE:                                                      Contact: Rebekkah Halliwell

October 4, 2022                                                                                                  (310) 670-2870

Seizure Safe Schools Act Signed by Governor Newsom

Bill Championed by Epilepsy Foundation Los Angeles Provides Schools with Education and Training for Recognizing and Responding to Seizures

California Becomes 19th State to Enact Version of Seizure Safe Schools Legislation

LOS ANGELES – The Seizure Safe Schools Act (AB 1810), a bill allowing public and charter schools in California to designate volunteers to receive training and education on caring for students with epilepsy, was signed into law by Governor Gavin Newsom on September 30, 2022. The Seizure Safe Schools Act, sponsored by the Epilepsy Foundation Los Angeles and authored by Assemblymember Marc Levine, had previously passed the State Senate in August with a unanimous vote of 38 to 0 after being approved by the State Assembly in May by a unanimous vote of 76 to 0.

“The adoption of the Seizure Safe Schools Act is a major victory for the nearly 60,000 kids in California with epilepsy,” said Rebekkah Halliwell, Executive Director of the Epilepsy Foundation Los Angeles. “Thanks to the leadership of Assemblymember Marc Levine and the steadfast support of a diverse coalition which included families affected by epilepsy, disability advocates, pediatricians and school nurses, schools in California will be well-equipped with the tools necessary to provide a safe and enriching environment for students with epilepsy.”

Among its major provisions, AB 1810 will allow schools to designate volunteers to receive initial and annual refresher training on recognizing and responding to seizures, including the administration of a student’s prescribed emergency anti-seizure medication.

“Children with seizures can be as safe at school as they are at home,” said Assemblymember Marc Levine. “Families are not powerless – we are empowered with tools to help our children live full, enriched and dynamic lives. AB 1810 makes sure that the same tools used to keep children with seizures safe at home are available to children at a school campus. I authored this important legislation for my child and for children throughout California who deserve to thrive in a safe and supportive learning environment.”

While school nurses are currently trained to recognize and respond to seizures, one may not be onsite or available when a seizure occurs. In 2013, the California Supreme Court unanimously ruled that California law already expressly permits trained, unlicensed school personnel to administer prescription medication and AB 1810 will guarantee that any employee who volunteers to care for a student with epilepsy will receive appropriate training and education.

“School nurses are the primary health professionals in a K-12 setting and the California School Nurses Organization was proud to support AB 1810. This law will provide school nurses with the tools they need to prepare and train other school staff to be able to respond appropriately when a child has a seizure,” said Sheri Coburn, Ed.D., M.S., R.N., of the California School Nurses Organization.

AB 1810 also safeguards physician-directed care and parental involvement by supporting development of Seizure Action Plans for students with epilepsy and identifying students who may be eligible for Individual Education Plans (IEPs) and Section 504 accommodations.

“Seizure Action Plans save lives. By establishing a strong line of communication between the families of students with epilepsy, their doctors, and their schools, Seizure Action Plans are a crucial tool for keeping students with epilepsy safe at school,” said Tracy Dixon-Salazar, PhD of the Seizure Action Plan Coalition, which was formed to educate people with epilepsy, their caregivers and healthcare professionals about seizure emergency rescue protocols and the importance of personalized seizure action plans.

AB 1810, which is based on the Epilepsy Foundation’s Seizure Safe Schools nationwide initiative, was supported by the bill’s sponsor, Epilepsy Foundation Los Angeles; the national Epilepsy Foundation; Epilepsy Foundation of Northern California; Epilepsy Foundation of Orange County; Epilepsy Foundation of San Diego County; as well as more than 90 other organizations, including American Academy of Pediatrics – California; American Nurses Association – California; Association of Regional Center Agencies; California Board of Registered Nursing; California Chronic Care Coalition; California Life Sciences; California Neurology Society; California School Nurses Organization; the Hidden Truths Project; Momentum; National Association of Pediatric Nurse Practitioners; Rare Epilepsy Network, and the Seizure Action Plan Coalition.

“As the primary author and sponsor of the American with Disabilities Act and a lifelong advocate for the rights of people with disabilities, I’m thrilled that California has become the 19^th state to implement the Seizure Safe Schools Act,” said former Congressman Tony Coelho. Coelho represented California in the House of Representatives for more than 10 years, eventually serving as majority whip, and former chairman of the board of the national Epilepsy Foundation.

Epilepsy is the fourth-most common neurological disorder in the United States. More than 3.4 million Americans are currently living with epilepsy, including approximately 336,000 kids who have at least one seizure annually.

About the Epilepsy Foundation Los Angeles

The Epilepsy Foundation Los Angeles is leading the fight to END EPILEPSY^® together and overcome challenges created by seizures by focusing on care, advocacy, research and education. Through these areas of focus, we offer a range of services and programs to help, support, advocate for, and empower those who are affected by epilepsy and their caregivers.

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In a recent issue of the International League Against Epilepsy’s Epigraph, the subject of COVID-19 and people with epilepsy arose following a report shared at the European Epilepsy Congress in Geneva this past July.

At the Congress meeting, Dr. Bernhard J. Steinhoff reported upon two years of data collection to address questions surround the risks of the COVID-19 infection and vaccination, such as:

Q: Does COVID-19 infection increase new-onset seizures or epilepsy incidence in the population?
A: There is no evidence that it does.

Q: Was the COVID-19 pandemic associated with increases in seizure frequency?
A: Yes – but they were not due to infections or vaccinations.

Q: Are people with epilepsy at increased risk for more serious cases of COVID-19 infection?
A: If they are, it is due to comorbidities or other factors – not the epilepsy itself.

Read more online here.

 

 

September 12, 2022