One of the worst moments for Logan Coulter this summer, at the rock-bottom low point of his 13-year-old daughter Gianna’s long-running health crisis, came when his two different worlds of agony collided with each other.
The Melba, Idaho, father of three was yet again bouncing from person to person on the phone with customer service representatives from Cigna, his health insurer – desperately trying to say the right words or find the right person who would finally understand the importance of approving coverage for a costly but proven-effective treatment for Gianna’s rare debilitating inflammatory brain disorder.
Meanwhile, Gianna was in the room next door – bedridden and sometimes writhing and shouting out in pain from the disorder known as PANS, or Pediatric Acute-onset Neuropsychiatric Syndrome.
Hours earlier, the deeply religious father and daughter had yet again said the rosary together, which often caused her symptoms to calm for a while. But now, as Coulter sat at his desk on hold with Cigna, pleading to speak with a decision-making doctor who might authorize infusion treatments for Gianna, the middle schooler was screaming out.
“‘Daddy, I don’t feel good’,” Coulter recalled, tearing slightly as he often does when he recounts his little girl’s ordeals. “‘Can I just go to heaven?’ She was just in agony, and I couldn’t even get a human on the phone.”
The Coulter family’s long-running battle to get Cigna – the nation’s 15th largest corporation – to cover what the leading medical authority on PANS had told them was the only drug with any hope to alleviate her suffering was an extreme example of a kind of trauma that millions of Americans face all too frequently.
A 2023 study by the health site KFF found that roughly six of ten Americans covered by health insurance nevertheless had trouble with a claim – most commonly because of the process known as prior authorization. That’s how companies like Cigna say they determine whether an expensive drug or procedure is truly necessary. Investigative reporters for sites like Pulitzer Prize-winning ProPublica have found that claims and preapproval requests – sometimes for life-altering treatments – are frequently rejected with little or no consideration, often by doctors with no expertise in the medical issue the patient is experiencing.
But Gianna’s story turned out differently for two reasons. One was the dogged persistence of her family who – unlike the vast majority of Americans turned down by Big Insurance, who do take “no” for an answer – kept calling Cigna and appealing through their specialist doctor more than 1,000 miles away in Indiana before eventually turning to contacts on social media in their desperation to find anyone who could help.
The other X factor was good luck. The initial plea from Logan Coulter – an executive with a real-estate title firm – to his mid-sized following on LinkedIn caught the attention of an executive working on solutions to the prior authorization crisis, who sent it to prominent people he knows, including the popular billionaire owner of the Dallas Mavericks, Mark Cuban. Soon, Cuban was retweeting at Cigna on Gianna’s behalf, and the now-viral social media campaign was also boosted by Hollywood actors Angie Harmon, Jeremy Renner and Harold Perrinau from TV’s Lost, who even texted Coulter to tell him that his own daughter had also struggled with PANS and understood the family’s ordeal.
The celebrity-backed campaign succeeded in ways the Coulters’ efforts – as an average American family – did not. Not long after Coulter’s second video about Gianna was posted, a woman from Cigna called to announce that she would be the girl’s case manager. Not long after that, the insurer said it was approving her treatments known as IVIG – for intravenous immunoglobulin, an infusion of antibodies – for three-month intervals going forward, and even would retroactively reimburse for a $15,000 first round that Coulter had paid from his own pocket.
“Keep clawing and scraping”
We spoke with Coulter roughly 24 hours after the good news from Cigna, and he told us there’s a lesson for so many others who’ve been denied coverage for necessary treatments.” If you get denied, use that fight you have in yourself,” he said. “Don’t accept a denial…You will prevail if you use the love and passion that you have. Keep clawing and scraping.”
This one determined dad proved that can work, but the American health care system should never make it this hard in the first place.
The family’s ordeal began with a medical mystery. About two years ago, everyone in the Coulter household – including Gianna’s two brothers, Heston and Callum – began to suffer strange illnesses around the same time, Coulter’s wife would find herself shaking, while their 10-year-old Callum was experiencing nausea and dizziness in school.
No one seemed more ill than Gianna, a normally outgoing middle schooler with a great sense of humor and a love for sports – especially soccer, which she played on travel squads while dreaming someday of a pro career. But everything changed. Recalled her dad: “Gianna had it the worst – especially at night. She was in an altered state of mind – angry, crying, saying that [her] brain didn’t feel right.”
Finally, Callum’s pediatrician determined after some tests that toxic mold was the likely culprit, and the family learned that an attic at home was thoroughly contaminated. The Coulters moved, and the ailments were treated and cleared up – except for Gianna. Over the next year or so, the girl’s outbreaks grew longer in duration.Local doctors in Idaho were initially flummoxed until finally, one raised PANS as a possibility.
PANS is a rare disorder that occurs usually when some other trigger, like an infection, sparks the immune system. It often appears suddenly in young people, and it can bring a variety of symptoms including mental health problems – such as obsessive-compulsive or eating disorders for some – or issues like the extreme irritability, pain and speaking and writing problems that Gianna experienced.
The determined Coulters looked for the top national expert on PANS. When they learned he was two days away they got in their vehicle and drove to Carmel, Indiana, to meet Dr. Scott Antoine, who wrote the book on the syndrome – literally. Antoine’s battery of tests confirmed a PANS diagnosis. Afterr a series of more conventional therapies like antibiotics and steroids showed little improvement, Antoine said IVIG was probably her only hope for relief. The infusions are not cheap – about $15,000 for each monthly dose – and when the treatment plan was submitted to Cigna, it was initially denied as “experimental.”
The next few months would be agonizing ones for the Coulters – especially with their awareness that medical relief for Gianna was a possibility. Instead, her condition worsened while the family and their physician labored to explain that the IVIG infusions – which had proven successful in other PANS patients – weren’t experimental but the only viable option. Gianna’s flares by then were lasting most of the day and keeping her awake at night, often leaving the once-star athlete unable to speak. In a gut-wrenching video, Coulter showed a scrap of paper where she tried to ask for “mac and cheese” but could only scrawl a couple of letters.
Cigna chose an allergist to review Gianna’s case
Meanwhile, Cigna denied an appeal that Coulter said was reviewed not by an expert on PANS but by an allergist. Antoine then sought and received a medical peer review which he thought would certainly change the insurer’s mind, yet it didn’t. Coulter said at this point he decided – belatedly, in his thinking – to start paying out-of-pocket for Gianni’s IVIG, even after calculating that $175,000 over two years would devastate any life savings. He said Gianna saw immediate progress after the initial treatment earlier this fall, with a couple of long periods of lucidity and shorter flares after that, giving the family hope.
But the Coulters never abandoned their other hope: Getting Cigna to cover the treatment. The reaction to Logan Coulter’s first LinkedIn video was more than he could have ever expected. One of those responding was Warris Bokhari, CEO of the startup company Claimable which is fine-tuning artificial intelligence to help patients and their doctors appeal prior authorization denials. Not only did he help Coulter draft a new appeal to Cigna, but it was Bokari who reached out to the popular Cuban, who has 8.9 million followers on the social media platform X.
On Nov. 10, Cuban retweeted Bokhari’s plea for Cigna to approve Gianna’s IVIG, which opened the floodgates not only for endorsements from other celebrities but also engaged the CEO of the national parent company of Coulter’s title-firm employer in the push. Cigna reached out to assure Coulter it would honor the three-day window on deciding their appeal, then approved the treatment, including the retroactive coverage of the first round that Coulter had sprung for.
Coulter didn’t have much time to bask in the victory. The family was packing for another long drive to Indiana to consult with Antoine, then back to Idaho for Gianna’s next infusion. Both the family and those who advocated for the 13-year-old know their saga is only a “feel good” story up to a point.
Most physicians and health care advocates believe the entire system of prior authorization needs a sweeping overhaul. The Biden administration enacted some significant reforms, but only for Medicare Advantage programs. Lawmakers on Capitol Hill and in several state legislatures continue to push for new measures to rein in the worst abuses by insurance companies.
After all, Mark Cuban can only tweet about so many cases. Even Gianna Coulter, a 13-year-old now seeking to put her personal ordeal in the rearview mirror, understands this. Her father said Gianna’s first reaction when she heard Cigna had authorized her care was to say: “Daddy, what about all the other kids?”
I have a visual of the dad as about 7 ft tall wearing a coat of armor and a sword/shield!! Bravo for battling these health insurers and their terrible policies! And so glad the daughter is doing well. There is something terribly wrong with our system.
So glad they won the fight against greed! I keep saying that America needs to get insurance out of the health care business.