BOSTON (SNHS) – Tiffany Uttam was facing every parent’s nightmare. Her nine-year-old son became abruptly ill, and no one could seem to help.
He was suddenly anxious and paranoid, hallucinating and unable to sleep without one of his parents because of separation anxiety. Uttam took him to doctors but they were baffled, thinking maybe he should be treated for a mental health condition. He developed verbal and physical tics, and Uttam took him to the emergency room, fearing he was having a seizure. He couldn’t go to school and became depressed.
Finally the family received a diagnosis: Pediatric Autoimmune Neuropsychiatric Disorders associated with Streptococcal Infections, or PANDAS.
“I can’t emphasize what this illness does not only to a child but how it impacts parents, caregivers,” Uttam said. “In our situation, I actually had to leave my position to be primary caregiver to my son.”
At last feeling that there was a solution for her son, Uttam sought treatment for PANDAS, looking into getting Intravenous Immunoglobulin therapy, also called IVIG. But to her shock, the family would have to travel out of state to get it, and her insurance would not cover the $25,000 bill for a single dose.
That is what brought Uttam and other families to Gardner Auditorium to testify before the Joint Committee on Financial Services last Tuesday, to tell her story and support a bill that would require insurers to cover treatment for children like her son.
Other families at the hearing had similar stories of the abrupt appearance of symptoms, from OCD-like behavior to issues with motor control, and a long struggle for a diagnosis, and an even longer one for treatment.
While Uttam’s family has been able to pay for IVIG out-of-pocket, she said that shouldn’t be a barrier to taking care of children.
Rep. Paul Brodeur of Melrose, who sponsored the bill, spoke about Massachusetts’ history of accessible health care.
“We really do need to take the next step because what we’ve found in the care or treatment of patients with PANDAS or PANS is that the level of treatment you can get or the adequacy of treatment you have access to depends on your ability to pay,” Brodeur said. “And that is not something that we stand for in Massachusetts and needs to change in this case.”
PANDAS is a subset of Pediatric Acute-onset Neuropsychiatric Syndrome, or PANS, and occurs when a child’s antibodies attack healthy tissue in the brain. Less severe cases can be treated in various ways, but the main treatment plan for severe cases is IVIG, which is almost universally denied by Massachusetts insurance, advocates said.
There are several different versions of the bill (H 920, H 947, H 990, S 613), but they all have the same language requiring insurance companies to cover treatment for PANS and PANDAS, specifically stating that said treatment “shall include but not be limited to” IVIG.
But for families like Uttam’s, IVIG is necessary to give children with PANDAS a normal life. Uttam said that just weeks after her son’s first IVIG dose he was completely back to normal.
“I am talking symptom-free, those tics are gone, he says ‘Mom, I feel like myself again,’ he’s sleeping in his own room, he’s picking up books that he can read,” she said. “I’m thinking oh my goodness. I bring him to the doctors, they can’t even believe it’s the same child.”
Uttam’s son has gotten six treatments of IVIG in the last four years; every several months he had a relapse, requiring a new dose. After remissions the symptoms get more severe, prompting doctors to start him on a schedule of a dose every three months.
Sen. Jason Lewis of Winchester, who sponsored the Senate version of the bill, spoke about the importance of providing health care to all residents.
“The challenge today is that, while health care should be treated as a basic human right, families that are dealing with PANS and PANDAS are often struggling to get the treatment that they need and to have insurers cover the necessary treatment,” Lewis said.
In written testimony to the committee, the Massachusetts Association of Health Plans said the bills would increase health care costs by expanding the number of mandated benefits. Citing reviews by the Center for Health Information and Analysis, MAHP said the coverage mandate could add $5 million to the cost of health care over five years, and that no consensus treatment guidelines have been developed for PANDAS and PANS, with IVIG treatments “considered experimental.”
“Current guidelines and recommendations call for treating acute infections, including strep, with standard antibiotic regimens, and the recommended treatment for chronic OCD and tic disorders continues to be psychotherapy and medications which target the symptoms of those disorders,” the association said. “MAHP member health plans currently provide robust coverage for psychotherapy medication for OCD and tic disorders.”
Lawmakers on the committee, after hearing testimony on the struggle of finding doctors to treat PANS and PANDAS, questioned the effectiveness of only addressing the insurance coverage angle of the struggle, instead of the wider medical industry.
In the meantime, Uttam attempts to give her son, now almost 13, the most stable life she can.
“Where other kids are looking forward to going to summer camp, going out with their friends, my son stares out the window and just dreams about being able to go outside,” Uttam said. “He just had his last treatment on June 25, and we are waiting for that treatment to help again so he can get back to his normal life.”