DES MOINES, Iowa – This week brings one of the first significant deadlines at the Iowa statehouse. However, for some Iowa families dealing with a rare disease, one bill could bring hope. Parents Shawn and Tiffany DeBouff said their son Rowan was diagnosed with the disease at the age of 4 years old.
“It was a night to day change. All of a sudden he became really scared to go anywhere or leave the house. Just a lot of anxiety but also some OCD, aggression, verbally and physically,” said father Shawn DeBouff.
According to medical professionals, PANS or PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. A series of infections like strep throat triggers the disease.
Rather than the child’s antibodies attacking the infection, it attacks the child’s brain. It leads children to suffer from anxiety, a loss of appetite, thoughts of suicide, separation anxiety, obsessive-compulsive disorder and tics.
“The way we treat it is usually by starting out with antibiotics and anti-inflammatories,” said pediatrician Dr. Cheryl Standings. For severe cases, parents have to turn to plasma exchange or intravenous immunoglobulin IVIG.
“It’s expensive, like usually around $10,000 a treatment. That’s why we’re trying to get legislation through [so] insurance would pay for this for this small number of kids who really need this treatment because most people can’t afford that kind of treatment,” said Dr. Standings.
The legislation would require insurance to cover critical PANS or PANDAS treatment programs. “All children regardless of socioeconomic background or whether or not their parents can afford it,” said Meredith Bose, a parent advocate for the bill. “I mean, how awful to know that there is a treatment out there and the only reason your child can’t have it is because you can’t afford it or you have to bankrupt yourself.”
Fortunately for the Deboff family, they could pay for their son’s treatments with help from family and friends. They also noticed that they got their cheerful and playful son back following the treatments.
“It is so hard as a mom to watch your child suffer in any way, but to watch your 4- and 5-year-old want to die just completely tears you apart,” said Tiffany. “There’s so many times that I just wanted to take it away like, please just take it away, whatever I can do to make it stop, so it was really hard, and I am so incredibly thankful that we are on the other side of it.”
On Monday, March 1, several parents plan to go to the Iowa Capitol to push the legislation. Democratic State Sen. Nate Boulton is one of the cosponsors for the bill. He writes to WHO 13 News:
“Last year, I worked with a bipartisan group of Senate cosponsors to introduce and pass a bill requiring insurance coverage of critical PANS/PANDAS treatment programs. While the bill passed the full Iowa Senate and a House committee without opposition, it did not get a full vote in the Iowa House. This year, I filed what is now Senate File 165 with Senator Annette Sweeney (R-Hardin) to help children suffering from PANS/PANDAS get the medical treatment they need. The bill has been approved by a Senate subcommittee but now needs to be passed by the Senate Commerce Committee in order to stay alive in the legislative process this year. Hopefully, we can get this bill passed for these families who have been through so much—they have dealt not only with this tragic illness, but also the many obstacles they be had to push through in obtaining medical care for their children.”