BATON ROUGE — June 30 marked a watershed moment for Louisiana families battling a silent, often misunderstood medical crisis. Governor Jeff Landry, surrounded by tearful parents, brave children, and dedicated lawmakers, signed the “Gillian Guiffreda Act” into law, officially making Louisiana one of the first states in the nation to mandate insurance coverage for treatment of PANS and PANDAS — two rare but life-altering pediatric autoimmune disorders.
At the heart of the ceremony stood 10-year-old Gillian Guiffreda, the namesake of the bill, alongside her mother Caitlyn, and the Gros sisters, Novalee and Genevieve, whose stories helped ignite a movement across the state.
“This law is a lifeline,” Caitlyn Guiffreda said emotionally. “For my daughter. For every child who’s been dismissed, misdiagnosed, or left to suffer because of a lack of understanding — it changes everything.”
The moment was a culmination of months of grassroots advocacy, emotional testimony, and unwavering determination from Louisiana families who turned their personal battles into public action. The bill — now law — requires insurance companies to cover key treatments for children diagnosed with PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).
What Are PANS and PANDAS?
PANS and PANDAS are autoimmune conditions that occur when a child’s immune system, in response to an infection, begins attacking the brain. The result is a terrifying and often sudden onset of symptoms that can mimic severe psychiatric illnesses: involuntary tics, anxiety, OCD, hallucinations, personality changes, and in some cases, complete emotional and cognitive disintegration.
“These children are often misdiagnosed with everything from Tourette’s to schizophrenia to autism,” said Rep. Kellee Hennessy Dickerson, who authored the bill. “But the root of it isn’t psychiatric. It’s medical. And with the right treatment — antibiotics, IVIG, and therapy — these kids can recover.”
From Desperation to Legislation
For Caitlyn Guiffreda, the law is deeply personal. Just two years ago, her daughter Gillian lost the ability to speak, developed severe tics, and began hallucinating — convinced strangers were trying to harm her family. After months of fear and unanswered questions, a correct diagnosis of PANS — and proper treatment — brought Gillian back.
The cost? Over $10,000, paid entirely out of pocket.
And she wasn’t alone. Michelle Gros, whose daughters Novalee and Genevieve both battled PANDAS, spent years navigating a medical system unprepared for their needs. Her daughter Genevieve explained the urgency.
“When you get PANDAS, your entire world falls apart overnight,” Genevieve bravely said to lawmakers. “It’s an emergency.”
The bill passed unanimously through both House and Senate Insurance Committees, garnering bipartisan support throughout its journey.
What the Law Does
The Gillian Guiffreda Act requires insurance providers in Louisiana to cover:
- IVIG (Intravenous Immunoglobulin) treatments
- Long-term antibiotic therapy
- Psychotherapy and behavioral interventions
- And removes unnecessary red tape, such as waiting for multiple specialists to approve care — a process that previously delayed treatment by weeks or months
For children facing neurological deterioration, those delays could mean lasting damage — or worse.
The law goes into effect January 1, 2026, giving insurance providers time to update coverage plans and educate their networks.
Another Unanimous Yes: Louisiana families fight for insurance coverage for children battling PANS/PANDAS
UPDATE: Another Victory for PANS/PANDAS Families — Bill Unanimously Passes Senate Insurance Committee
BATON ROUGE, LA — Momentum continues to build for families fighting for insurance coverage of life-saving treatment for children with PANS and PANDAS.
On Wednesday, advocates celebrated another major milestone as the bill passed unanimously through the Senate Insurance Committee — a powerful show of bipartisan support and growing awareness around the urgent need for access to treatment.
“This is another huge step forward,” said Caitlyn Guiffreda, the mother whose daughter’s battle with PANDAS helped spark the legislation. “Every ‘yes’ vote is a vote for families like ours who just want to see their children healthy and whole again.”
The bill, authored by Rep. Kellee Hennessy Dickerson, would require insurance companies to cover key treatments for PANS/PANDAS, including IVIG, long-term antibiotics, and therapy. With committee approval now secured in both chambers, the bill heads next to the full Senate floor for debate and a final vote.
“This isn’t about politics,” Rep. Dickerson said. “This is about saving children. And I’m grateful to see so many lawmakers understand that.”
Advocates say they’re hopeful — but not slowing down. Parents and children impacted by PANS/PANDAS continue to meet with lawmakers, share their stories, and push for final passage before the session ends.
UPDATE:
BATON ROUGE — After a brief setback last week, House Bill 408 is back on track. The bill, which aims to support families affected by PANS/PANDAS, passed off the House floor with no opposition and strong bipartisan support, including several new co-authors.
“So proud that we got HB 408 off the floor with no opposition and so many Co-Authors! Little Jillian is my ‘Why’ on this bill! God is Great! Thank you House Members!” said Representative Kellee Dickerson, who authored the bill.
Advocates are celebrating the progress as a significant step forward and remain hopeful as the bill now heads to the Senate.
A Mother’s Mission: Louisiana families fight for insurance coverage for children battling PANS/PANDAS
BATON ROUGE – On any given day at the Louisiana State Capitol, bills are debated, deals are made, and decisions are passed down that shape the future of thousands.
But on one particular day this legislative session, something different happened. Something sacred. Something stirring.
A mother wept. Children testified. Legislators held back tears.
A spark of hope began to flicker for families facing a dark, misunderstood disease that can steal a child almost overnight.
Caitlyn Guiffreda never imagined she’d become an advocate. Her world revolved around her daughters, Gillian Rose and Emilia Mae. Her oldest daughter Gillian was a bright, bubbly 10-year-old, who loved life, school, and her family. But in June 2024, everything changed. Gillian suddenly developed a tic and soon lost her ability to speak. Her hands began shaking uncontrollably. Within a few days, she became delusional—convinced monsters were trying to break into their home, wielding a toy sword to protect her family from invisible threats.
“She would scream that there were people trying to break into her home, and the scary people were trying to take her away,” she recalled. “Then again, the whole time, her body ticking and convulsing.”
No one knew what was happening. Doctors shrugged. Specialists were vague.
“It was terrifying,” Guiffreda said. “She couldn’t hold a cup. She couldn’t talk. And worse—she was afraid of us. I thought I was losing my child.”
Then came a lifeline—a mother named Michelle Gros. She and her two daughters, Novalee and Genevieve, had lived through a similar nightmare. The symptoms were eerily alike, and Michelle immediately recognized the signs. She told Caitlyn three powerful words: “It’s PANS or PANDAS.”
Watch video of 10-year-old Gillian’s suffering with PANS/PANDAS
What is PANS/PANDAS?
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) are devastating medical conditions that trigger sudden, severe neuropsychiatric symptoms in children after an infection—most commonly strep throat or mycoplasma pneumonia. The illness affects 1 in 200 children.
The symptoms are often terrifying:
- Sudden OCD or anxiety
- Hallucinations or delusions
- Motor and vocal tics
- Emotional outbursts or aggression
- Involuntary movements
- Loss of speech or fine motor skills
Sometimes, PANS/PANDAS is left untreated—or misdiagnosed as autism, Tourette’s, or a psychotic disorder — these children can spiral into deeper suffering. Many are placed on psychiatric medications that worsen symptoms. Some are institutionalized. A heartbreaking number die by suicide.
“I follow families across the country, and I’ve encountered heartbreaking stories. Many of these kids go through unimaginable things—some even end up in DCFS custody because of the severity of the situation the illness creates for families. Sadly, the suicide rate is devastating,” Michelle Gros said.
But there is hope.
A treatment called IVIG (Intravenous Immunoglobulin), along with antibiotics and therapy, has proven life-saving for many. The problem? Insurance won’t cover it.
The cost? $10,000 or more—per infusion.
From heartbreak to hope
Gillian’s diagnosis came after Caitlyn pressed forward with help from Michelle and their pediatrician, who identified mycoplasma pneumonia—a known PANS trigger—as the likely culprit. After months of fear, the answer gave Caitlyn direction.
But treatment came at a steep price—$10,500 upfront.
“There was another family, their charge was just over $17,000 that they had to come up with that money out of pocket,” she said.
Desperate to help not just her daughter, but other families facing the same nightmare, Caitlyn did something extraordinary. She started emailing legislators blindly, desperately and hopefully.
Most had already filled their quota of bills for the session. But then, Caitlyn got a call.
“It was like the hand of God,” said State Representative Kellee Hennessy Dickerson, recalling that moment. “I had one bill fall through, and I just couldn’t get this family out of my head. I called Caitlyn and said, ‘I’m going to take your bill.’ She started crying. And honestly? So did I.”
With that, HB408 was put in play.
The Gros Sisters | The power of a mother’s voice
What began as a mother’s cry for help became a movement when Caitlyn and Michelle walked into the House Insurance Committee with their daughters, who bravely shared their stories on PANS/PANDAS.
Novalee Gros, now 17, was 9 when her battle with PANDAS began.
“I loved Barbies and gymnastics,” she told lawmakers. “Then one day, I woke up and couldn’t control my body.”
She spoke of pain, anxiety, tremors, and the terror of being told it was all in her head.
“My left eye started shutting on its own. I had 20 different tics, forced piano fingers, tremors… I couldn’t play with my Barbies or write at school. I was trapped in a prison.”
For 13 months, she was misdiagnosed — once with Tourette’s, once with a psychotic disorder. She was medicated into a zombie-like state, while her parents frantically sought answers.
Her younger sister, Genevieve, had a similar experience two years later—but thanks to her older sister’s journey, Genevieve was diagnosed and treated early.
“With PANS/PANDAS, like, you need to get it checked out right away. Like it’s an emergency,” Genevieve told UWK in an interview. “I lost my sister for years because she didn’t have treatment.”
The younger Gros sister said she wasn’t able to write for six months due to the uncontrollable tics.
“When you get PANDAS, your entire world falls apart overnight,” Genevieve bravely said to lawmakers. “It’s an emergency. Kids hurt themselves. They don’t know what’s real. They need help—fast.” Their testimony gripped the room. Lawmakers, many of them fathers, wiped away tears.
“My heart was full,” Rep. Dickerson recalled. “They inspired us. They reminded us why we’re here, to make a difference.”
The battle with insurance over PANS/PANDAS
The bill Caitlyn and Rep. Dickerson introduced would requires insurance companies in Louisiana to cover IVIG, antibiotics, and therapy for children diagnosed with PANS/PANDAS. On the opposite side of the debate, insurance companies are pushing back. They are proposing added layers of red tape—requiring three different specialists to approve treatment before it’s covered.
“It took us six to eight weeks to see one specialist,” Caitlyn said. “We don’t have time for three. Every second matters.”
Rep. Dickerson explained the stakes: “If misdiagnosed, these kids are put on psych drugs, institutionalized, or worse. We’re talking hundreds of thousands of dollars—and unthinkable emotional trauma. But with proper treatment, these children get their lives back.”
She paused, her voice cracking.
“Some families have had to lock their doors at night because their child thinks demons are chasing them. Their brain is inflamed—they’re not in control. This bill could be the difference between life and death.”
One child’s question
After testifying at the Capitol, Caitlyn and Gillian returned home. The experience had been empowering—but also emotionally exhausting.
That night, Gillian turned to her mother.
“Mom, what if the bill doesn’t get through?” she asked, her voice trembling.
Caitlyn reassured her: “We’ll do everything we can to help you. I promise.”
But then Gillian’s next words broke her mother’s heart all over again.
“But Mom…what about all the other kids who won’t get help?”
Moving forward | What’s next?
The PANS/PANDAS Insurance Coverage Bill passed the House Insurance Committee unanimously. Two days later, advocates learned that HB 408 had been recommitted to the House Appropriations Committee.
Recommitting a bill means that the bill is being sent back to a specific legislative committee—in this case, the Appropriations Committee, which handles anything involving state spending or budget impact. Once it’s back in the Appropriations Committee, it stands the chance of not getting heard again before the session ends.
“I’m doing everything in my power to keep it going,” Dickerson said in response to the setback.
Rep. Dickerson remains hopeful but knows the road ahead is steep.
“We’ve got an uphill battle. But we have the truth, we have the science—and we have the heart of parents who refuse to give up.”
As for Caitlyn, Michelle, and their daughters—they’re not stopping. Not until every child in Louisiana, and maybe one day across the country, can access the life-saving treatment they deserve.
As Rep. Dickerson said, “With this treatment plan, families are handed their child back again. That’s a blessing we must make accessible.”
Download the Unfiltered with Kiran app from the Apple App Store and Google Play to stay updated on the latest news across the Capital area.
Support UWK and its mission to deliver The News You Deserve. Unfiltered. Become a monthly patron on Patreon today!
