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Marijuana-Derived Epilepsy Drug in Clinical Trial for Children

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By Juliana Bunim UCSF News

A new international, multi-center study led by researchers from UCSF Benioff Children’s Hospital is the first to evaluate whether purified cannabinoid is effective in treating severe forms of childhood epilepsy that do not respond to standard antiepileptic drugs.

“Better treatment for children with uncontrolled seizures is desperately needed,” said Maria Roberta Cilio, MD, PhD, principal investigator for the multi-center study and director of research at the UCSF Pediatric Epilepsy Center. “It’s important to get seizure control at any age, but in children, uncontrolled seizures may impact brain and neurocognitive development, which can have an extraordinary effect on quality of life and contribute to progressive cognitive impairment.”

The drug, called Epidiolex, is a purified cannabinoid that comes in a liquid form containing no tetrahydrocannabinol (THC), the psychotropic component in cannabis. Produced by the biopharmaceutical company GW Pharmaceuticals, Epidiolex is considered a schedule 1 substance by the U.S. Food and Drug Administration (FDA) and is closely monitored and restricted by both the FDA and U.S. Drug Enforcement Agency.

The trial will enroll a total of 150 patients across six centers. The study began earlier this month at UCSF Benioff Children’s Hospital and is also underway at NYU Langone Medical Center. Pending FDA approval, it will launch at four additional institutions this year.

“Studies have been conducted in healthy adults who have shown CBD to be well tolerated and safe,” said Joseph Sullivan, MD, co-investigator for the UCSF trial and director of the UCSF Pediatric Epilepsy Center. “While we don’t know the full side effect profile in children, this study will allow us to follow the children closely and determine if the side effect profile differs from that in adults.”

The patients are all between the ages of one and 18 with intractable epilepsies shown to be resistant to many if not all of the antiepileptic treatments, including drugs and a ketogenic diet. This includes children with Dravet syndrome, a rare genetic disorder that manifests in early childhood with frequent, disabling seizures often occurring daily and numbering into the hundreds, as well as profound cognitive and social deficits.

For one year the patients will be carefully monitored with seizure diaries and blood tests to measure the levels of the patients’ other seizure medications in order to learn about safety, dosage, effectiveness, and drug interactions.

“Studies in animal models have shows CBD works as an anticonvulsant, but this is just the initial exploratory step to determine whether further testing of CBD as an anticonvulsant is warranted, and how it will be conducted,” said Cilio. “Our current trial will hopefully lead to a placebo-controlled, blinded clinical trial in the types of epilepsy that respond best to CBD.”

UCSF Benioff Children’s Hospital was the first site to ever administer Epidiolex in children with epilepsy. In April 2013, the drug was given to two patients who were part of a special exploratory study approved by the FDA’s Investigational New Drug (IND) program, and results from that initial experience helped provide the framework for the current study, according to researchers.

“This trial is pioneering a new treatment for children with the most severe epilepsies, for whom nothing else works,” said Cilio. “But we are just at the beginning, combining experts in the field with a brave institution ready to take this on, and courageous patients looking for hope.”

UCSF Benioff Children’s Hospital creates an environment where children and their families find compassionate care at the forefront of scientific discovery, with more than 150 experts in 50 medical specialties serving patients throughout Northern California and beyond. The hospital admits about 5,000 children each year, including 2,000 babies born in the hospital.

 

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Business

OP-ED: Proposition 44 Would Put a Price on Trust

The danger in Proposition 44 is not only its 90 percent figure. It is that the meaning of “qualifying” spending will be worked out later. A clinic preparing a budget today may not know whether a navigator, health educator, transportation program, outreach worker, technology upgrade, or other patient-support service will be counted the way it expects. Yet the financial consequence of getting it wrong could be immediate.

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iStock.

Oakland’s public conversation about health care must begin with a simple truth: a doctor’s appointment is not the same thing as access to care.

For a mother juggling work and child care, access may mean a text-message reminder, a bus pass, an evening appointment, or someone who can explain what Medi-Cal covers. For an older patient managing diabetes, it may mean help scheduling a specialist visit and understanding new medications. For a family that has been dismissed or misunderstood in medical settings, access may begin with meeting a community health worker who knows the neighborhood, speaks their language, and treats their concerns with respect.

Community health clinics make that kind of care possible. They are part medical provider, part navigator, part educator, and part trusted local institution. Proposition 44 threatens to narrow the definition of what counts as patient care in a way that could undermine the very supports that allow patients to receive it.

The statewide measure would require covered nonprofit community clinics to spend at least 90 percent of their annual revenue on health care or qualifying program services. The ballot measure directs the Attorney General to establish more detailed guidance on what expenses qualify. Clinics that do not meet the threshold could face penalties for the difference. The Legislative Analyst’s Office reports that affected clinics currently spend an average of about 80 percent of revenue on health care services.

A percentage may look like a clean measure of accountability. But health care is not cleanly divided between what happens inside an examination room and everything that enables a patient to enter one.

Consider the work that happens before and after a visit. Clinic staff maintain confidential patient records. They follow up after missed appointments. They keep information systems secure. They recruit and train employees in an expensive and competitive health care labor market. They coordinate referrals, process claims, purchase supplies, maintain buildings, and make certain that patients are not lost somewhere between diagnosis and treatment.

Oakland families should not be asked to accept the fiction that these functions are unrelated to care.

The danger in Proposition 44 is not only its 90 percent figure. It is that the meaning of “qualifying” spending will be worked out later. A clinic preparing a budget today may not know whether a navigator, health educator, transportation program, outreach worker, technology upgrade, or other patient-support service will be counted the way it expects. Yet the financial consequence of getting it wrong could be immediate.

The Legislative Analyst’s Office says clinics falling short of the requirement could be required to pay the shortfall amount to the state and could seek to recover the money only if they show compliance within five years. The same analysis estimates state enforcement costs in the low tens of millions of dollars annually, supported by fees.

That is a troubling arrangement for organizations that are expected to provide care to people with the fewest alternatives.

Oakland has learned that trust is not built through slogans. It is built when a patient is listened to, when a parent can secure an appointment for a child, when a clinic returns a call, and when a person receives help without being shamed for their income, insurance, language, immigration history, or prior experience with the system.

For Black residents in particular, trustworthy care is not an abstract goal. Persistent inequities in health outcomes and patient treatment are real. Community-centered clinics can help bridge the gap with culturally responsive staff, patient navigators, behavioral-health programs, and partnerships that understand the conditions shaping health outside the clinic door.

Proposition 44 could pressure providers to treat those supports as expendable because they do not fit neatly into a state-enforced formula. That would be a mistake.

Accountability is necessary. Clinics that receive public resources should be transparent, well governed, and focused on their mission. But good oversight asks whether patients are being served well, whether money is managed responsibly, and whether communities can obtain needed care. It should not rely on a rigid ratio that may punish clinics for doing the hard work of reaching people who need more than a brief medical encounter.

A broad coalition of providers and community organizations opposes Proposition 44, including the California Primary Care Association, the California Medical Association, the California Hospital Association, Planned Parenthood Affiliates of California, and the California Teachers Association.

Oakland needs health policy that expands the circle of care. Proposition 44 risks drawing that circle smaller.

The Oakland Post editorial board urges a No vote on Proposition 44.

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Business

OP-ED: Proposition 40: It’s Time to Play Chess, Not Checkers

Proposition 40 would impose a one-time 5 percent tax on the wealth of Californians with more than $1 billion in assets. Most of that money would go toward health care, with the remainder supporting food assistance and education-related programs.

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Photo: iStockphoto.

I understand the frustration driving Proposition 40. I share our labor partners’ concerns about protecting health care and essential services at a time when working families are already under enormous pressure.

But labor itself is divided over Proposition 40, and there is good reason to look carefully at what this measure could mean beyond the money it promises to raise.

Proposition 40 would impose a one-time 5 percent tax on the wealth of Californians with more than $1 billion in assets. Most of that money would go toward health care, with the remainder supporting food assistance and education-related programs.

Those are worthy investments. The question is whether this is the right way to pay for them.

California’s independent Legislative Analyst says the measure could raise tens of billions of dollars in the short term. But that same analysis warns that California could eventually lose hundreds of millions of dollars a year in ongoing income-tax revenue if some wealthy taxpayers leave the state or change their financial behavior.

That matters because those dollars help support the General Fund and the broader system of programs and services Californians rely on.

So let’s be clear: This is not about feeling sorry for billionaires. Billionaires will be fine.

This is about protecting the people who will not be fine if we get the policy wrong.

For decades, those of us in Black media have watched public policy debates move from crisis to crisis. We have also watched Black communities deal with the consequences when decisions made in Sacramento or Washington did not fully consider what would happen two, three, or four moves later.

We know what happens when funding disappears. Community organizations struggle. Small businesses lose support. Programs serving young people are squeezed. Schools and local governments are asked to do more with less. The people with the fewest resources are usually the first to feel the consequences.

That history should make us cautious about making major changes to California’s tax system without considering the entire board.

If California believes billionaires should contribute more, then let’s have that conversation. There is nothing unreasonable about asking whether people who have benefited enormously from California’s economy should contribute more to sustaining it.

But we should build tax policy that is thoughtful, sustainable, and difficult to avoid. We should not create a temporary solution that could leave us confronting another revenue problem down the road.

This is also why I respect those in labor who support Proposition 40, even though I have reached a different conclusion. They are responding to very real concerns about health care and the people who depend on it. Those concerns should not be dismissed.

But neither should legitimate questions about Proposition 40.

Too often our politics tells us that if we agree with the goal, we must agree with the proposed solution. That is not how responsible public policy works.

You can believe health care must be protected and still question the mechanism being proposed to protect it.

You can believe billionaires should pay more and still ask whether this particular tax is the smartest way to accomplish that.

And you can stand with working people while insisting that California consider the long-term consequences for all of the public programs working people depend upon.

We need to stop treating complicated economic decisions like a game of checkers, where we look only at the move directly in front of us.

We need to play chess.

Look at the whole board. Think several moves ahead. Understand what happens after the first check is collected and spent.

The question before Californians is not whether billionaires can afford to pay more. They can.

The question is whether Proposition 40 is the right way to do it and whether we are confident enough in the consequences to make this kind of change.

Our communities cannot afford for us to discover the answer too late.

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Black History

Listening as a Lifeline: A Doula’s Witness to Black Maternal Health

OAKLAND POST — Maternal mortality and pregnancy-related mortality use different time frames and methods and are not interchangeable. Finalized 2024 CDC data recorded 649 maternal deaths nationally. The overall rate was 17.9 deaths per 100,000 live births, but for non-Hispanic Black women it was 44.8, compared with 14.2 for White women and 12.1 for Hispanic women.

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Antoinette Stewart-Eneh.

Word Count: 1058

Note: Client A, B & C, names are withheld for privacy; these accounts reflect my recollections as their Doula.

Client A rocked her hips on a birthing ball, surrounded by pale wood and warm textiles in a softly lit Scandinavian-style office. I was her doula through a Southern California maternal health company combining nurse-led care, technology, and wraparound support.

She was a healthy Black woman in her thirties. Her baby girl was doing well; her partner took notes as we discussed labor and advocacy.

Then we turned to their chosen hospital. I knew it well—and remembered a phrase from another client’s experience: “Policy of Sovereignty.”

Client B had been told she needed a repeat cesarean as a precaution, though the reasoning was unclear. Her obstetrician, who performed her first cesarean two years earlier, had assured her throughout pregnancy that she was healthy, healed, and ready for a vaginal birth. We asked staff to review her chart, consult her obstetrician, and reconsider immediate surgery. Instead, they invoked the “Policy of Sovereignty.”

The physician on duty, we were told, had final authority, regardless of her established care plan. I asked whether an ultrasound or reassessing the baby’s position could offer clarity. Cesareans can be lifesaving. But were Client B’s history, informed consent, and circumstances guiding this decision—or was routine overriding individualized care? We kept asking for her obstetrician. Beneath every request was a deeper question: Was she being heard?

The Numbers Behind the Stories

Statistics arrive in clean columns. The experiences behind them do not.

Maternal mortality and pregnancy-related mortality use different time frames and methods and are not interchangeable. Finalized 2024 CDC data recorded 649 maternal deaths nationally. The overall rate was 17.9 deaths per 100,000 live births, but for non-Hispanic Black women it was 44.8, compared with 14.2 for White women and 12.1 for Hispanic women.

In California, Black birthing people experienced 56.5 pregnancy-related deaths per 100,000 live births during 2020–2022—3.8 times the White rate and four times the Asian rate.

As a doula serving Los Angeles and San Bernardino Counties, I see faces behind those numbers. I remember concerns raised softly, then firmly, then desperately. I am tired of watching Black families enter spaces meant to protect them, only to discover they must defend themselves while laboring, bleeding, trembling, or recovering.

Returning to Client A

Client A’s labor stretched nearly 48 hours. As her condition worsened, she, her partner, and I asked whether a cesarean should happen sooner. A provider questioned my place as a doula, then said she was next.

Six more hours passed.

She entered surgery visibly ill with a serious uterine infection, her baby malpositioned and stuck. Her partner later recalled the provider saying, “This baby would never have made it through the birth canal.”

Those words landed like a blow. Our urgency had been treated as ignorance. With Client B, we questioned why surgery was inevitable. With Client A, why it was delayed. Doula advocacy is not about one kind of birth. It is about informed consent, individualized care, and timely action. Hospital routine should never outweigh the person carrying the risk.

Survival Cannot Be the Standard

The Black maternal health crisis includes unequal care, untreated conditions, racial bias, delayed referrals, poor communication, and inadequate postpartum support. It is about birth plans respected only until a hospital becomes less busy and postpartum care that asks whether a mother survived, not whether she has what she needs to recover.

Survival cannot be the standard. Technology can support care, but it cannot replace human connection. An algorithm cannot detect fear in a patient’s eyes, and a mission statement alone cannot ensure adequate staffing or culturally responsive care.

The Story of Client C

Before I arrived, I heard the chaos through Client C’s phone. Staff struggled to locate her baby’s heartbeat on an external monitor as her fear and blood pressure rose. I pleaded for an internal electrode before surgery.

“There’s not enough time,” a nurse said.

“I would like to wait for my doula,” Client C called out.

But she was medicated, hurried through consent, and wheeled away while I listened.

In the operating room, after a shift change, another nurse placed an internal electrode and said, “The previous monitor wasn’t working.”

No one responded.

According to her father, the obstetrician avoided eye contact: “We need to move forward.”

Surgery may still have been necessary; that was not mine to determine. But if faulty equipment helped create the emergency, the family deserved acknowledgment and explanation—not silence. No family should have to wonder whether major surgery followed an unavoidable crisis or a machine failure no one recognized in time.

From Prevention to Accountability

After supporting nearly 100 families, I have learned that danger often begins before admission. I have urged clients to seek care—and heard why they feared returning: dismissed pain, harsh words, shame for asking questions.

Care cannot be holistic where Black families do not feel safe enough to speak or return. Representation matters, but providers of color cannot repair inequity alone. They need adequate staffing, mentorship, culturally responsive training, reliable equipment, and colleagues that are reflective of all the aforementioned. It’s not the Black providers job to care for just the Black patients, everyone should have the same goal.

The Momnibus Act, California’s Medi-Cal doula benefit, the Transforming Maternal Health Model and the Perinatal Equity Initiative require more than promises; they need sustained funding, reliable reimbursement and accountable implementation.

Birth should be sacred. Yet too many Black birthing people arrive carrying the burden of proving their pain is real. A doula can listen, educate, comfort, and advocate—but cannot repair a system that refuses to listen. The true measure of progress is what happens when a Black birthing person says, “Something is wrong.”

Are they believed? When equipment fails, is that failure acknowledged? Do families leave not merely alive, but safe, respected, supported, and whole?

Until those answers are consistently yes, California’s maternal health success story remains unfinished.

About the Author

Antoinette Stewart-Eneh is a mother of two, holistic maternal wellness advocate, and birth and postpartum doula who has supported families since 2019. She serves as program operations coordinator for Frontline Doulas, a volunteer client coordinator with the Joy in Birthing Foundation and a childbirth educator in South Los Angeles. She is studying to become a midwife and lactation educator.

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