Time to Cover PANS/PANDAS with Medical Insurance

Have you ever heard of the PANS/PANDAS diagnosis? Well, if you have a child who’s one-to-13 years old, it would be a very good idea to become informed.

That includes medical and mental health professionals, as the misdiagnosis factor is unfortunately quite common; and the results can be devastating. PANS/PANDAS are inflammatory brain disorders that can become chronic or life-threatening conditions when left untreated.

Ten states have passed laws requiring health insurance companies to cover treatment costs for PANS/PANDAS. California has yet to go in this direction. Parents can be hit hard financially – if they even have the correct diagnosis. They’ll usually have to watch their child go through devastating change without clearly seeing what the diagnosis and treatment should be.

PANS and PANDAS are treatable neuropsychiatric diseases that can cause devastating effects to the brain. These infections can cross the blood brain barrier, causing an inflammatory response in the basal ganglia. The basal ganglia manages the signals your brain sends that help you move your muscles.

Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a clinical diagnosis given to children who have a dramatic onset of neuropsychiatric symptoms including obsessive-compulsive disorder (OCD) or an eating disorder, according to Stanford University’s School of Medicine. Symptoms can include depression, irritability, anxiety and difficulty with schoolwork. The cause of PANS is unknown in most cases but is thought to be triggered by infections, metabolic disturbances and other inflammatory reactions.

Patients with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) have an acute onset of neuropsychiatric symptoms, specifically OCD or tics (involuntary, purposeless movements), Stanford says. However, PANDAS patients test positive for a recent streptococcal infection, such as strep throat, perianal strep, or scarlet fever. Like PANS patients, they also may suffer from uncontrollable emotions, irritability, anxiety and loss of academic ability and handwriting skills.

Mistaken diagnosis, such as for a mental health disorder, is a common problem here.

Many of these children will be misdiagnosed as having OCD, oppositional defiant disorder (ODD), bipolar disorder, schizophrenia, or something else. It’s been straining the nation’s behavioral health system and California’s mental health resources. It’s also been rough on children and young teenagers who come down with it, and for their parents, some of whom have committed suicide in recent years over it.

California PANS/PANDAS Advocacy (CalPans) is a grass-roots group working to have California adopt proposed legislation where children can be accurately evaluated and diagnosed. The organization is also calling on the healthcare sector to come forward with accurate diagnoses and treatment, and medical insurance coverage for this life-threatening disease.

Mothers Who Have Lived Through It

Raising children is hard work for parents – but if you add PANS/PANDAS to their child’s life experience, everything can change almost instantly.

CalPans reports that for kids who have it, 11% are 1-to-3 years old; 69% are 4-to-9 years old; 19% are 10-to-13 years old and only 0.1% are 14 years and older. Another organization, PANDAS Network, says that about 1 in 200 children in the U.S. have, or will develop, PANS/PANDAS.

Long Beach resident April Ronay has seen what it’s like through the experiences of her son, who’s a student at Wilson High School. Eight years ago, he contracted an illness after a strep infection. The eight-year-old boy was examined for a number of conditions including ADHD and ODD, but his brain continued being attacked by PANS/PANDAS before it could be stabilized.

Ronay has been very active in CalPans and wants to see lessons learned by parents and their kids to be shared with those who desperately need it. Other members of CalPans have had their share of experiences and were happy to talk about these issues during a Zoom call with Beachcomber coordinated by Ronay.

Years ago, Karla Aceves took her daughter over to the family doctor, but all that was done was to refer her daughter over to a psychologist. She could have had antibiotics prescribed that day, or a strep infection test or another type of test could have been carried out. But the family doctor saw it only as a psychological disorder.

Shari Strulson has watched her son improve and decline over and over, primarily in the past three years. Finding the right treatment for him gets harder at each phase, Strulson said. Psych medications might not work for calming and sedating his inflammation. He can seem to be too sick for treatment, and then they will see him experience some improvements.

Dr. Angela Tang saw her son go through the ringer in September 2018 after being taken to one of UCLA’s emergency rooms. What started with a sore throat went quickly into an extreme, when he couldn’t swallow and keep down food. He was tested, including given an MRI, but the treatment process was expedited when he was sent home before anything could be clearly diagnosed.

He was taken to Long Beach Memorial Medical Center where a neurologist was able to accurately diagnose him with PANS/PANDAS. He was able to be released from that hospital within two days and could go back to school soon after. Her son is now a student at Stanford University.

Some Experts Supporting It,
But Not Enough

Stanford is one of the few universities conducting research and releasing public education information on PANS/PANDAS – along with Yale University, Columbia University and Georgetown University. National Institute of Mental Health has issued a grant study that will come out in the next few years.

For California parents facing PANS/PANDAS with one or more of their children, they end up having to invest a great deal of time and money in finding a solution. That usually means finding a specialist doctor, a university, a hospital or treatment facility that is well informed, but for now there’s very little unifying them with the medical profession. Plus, the right treatment facility could be very far away from home.

Some of these medical professionals choose to stay quiet about it, and away from the problems that can arise. What are these problems? One of them is that medical insurance companies don’t want to add this diagnosis to their list of covered treatment and to have to pay for it.

One of these costs could be the Cunningham Panel, a metabolic lab test that can contribute real value to the diagnosis and treatment. For now, parents have to pay $1,000 for this test that’s usually not included in California medical coverage plans — at least for PANS/PANDAS.

Efforts Have Been Made

This is nothing new in California, where CalPans for years has been lobbying to get it through Sacramento and to educate the public and medical profession. In August 2018, the organization was part of Assembly Concurrent Resolution (ACR) 259 being passed, which at least put the process into motion.

Assemblyman James Gallagher (R-Yuba City) was able to get that bill passed and signed that officially made Oct. 9 PANS/PANDAS Awareness Day in the state. Gallagher and other bill supporters were concerned about it many times being misdiagnosed as a psychiatric disorder. The law has brought more awareness of the diagnosis to the state, and to encourage doctors to be informed about it and the treatment.

The challenge will be joining 10 other states in being accountable for it. Ten states have passed laws requiring health insurance companies to cover treatment costs for PANS/PANDAS. Alabama, Arkansas, Delaware, Illinois, Indiana, Maryland, Massachusetts, Minnesota and New Hampshire have such laws in place. Rhode Island’s version of it will become active on Jan. 1.

CalPans has been working hard at getting a new bill signed into law that would improve the state of PANS/PANDAS treatment, and equal to what the 10 other states have already put in place. The nonprofit organization says that the right kind of proposed legislation can mean that 90% of these cases will recover with first-tier treatment, including antimicrobials/NSAIDS/corticosteroids; and that an estimated 10-15% of PANS/PANDAS cases will further require IVIG and other second-tier treatments.

Intervenus Immunoglobuline (IVIG) is a therapy treatment for patients with antibody deficiencies. It is prepared from a pool of immunoglobulins (antibodies) from the plasma of thousands of healthy donors.

CalPans and The American Red Cross are working together through Jan. 1, 2023, to seek blood donations that will make a positive difference in PANS/PANDAS medical treatment. These blood donations are creating a pool of immunoglobulins (antibodies) from the plasma of healthy donors. It’s creating Intravenous Immunoglobulin (IVIG) therapy treatment for patients with antibody deficiencies. Those interested in pledging a donation can visit here: https://www.youtube.com/watch?v=2JJ3ePkhlFI.

Jon LeSage is a resident of Long Beach and a veteran business media reporter and editor. You can reach him at jtlesage1@yahoo.com.