Hull woman a leader in push for passage of a ‘lifesaver’ of a bill

Costly treatment for childhood illness now covered by new state legislation

Hull resident Jennifer Whelan became involved with the New England PANS/PANDAS Association several years ago as a way to connect with other families who have children struggling with this life-altering auto-immune disorder, to help raise awareness about it, and to advocate for legislation mandating insurance coverage, which passed in January.

“I have a child who suffers from this devastating disorder and became passionate about educating others and advocating for these children and their families,” says Whelan. “I am elated that the legislation passed.”

The New England PANS/PANDAS Association is a group of parent and medical volunteers from states across New England focused on raising awareness of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS).

Whelan currently serves on its Executive Board as secretary to the association and was part of the successful effort by the MA Coalition of PANS/PANDAS to get the legislation approved.

On Jan. 1, Gov. Charlie Baker signed a health care bill into law that includes the creation of a PANS/PANDAS Advisory Council and a mandate that insurance companies provide coverage for the disease by January 2022 – a major victory for advocates, including Whelan. The cost of the treatments can be astronomical and can cause extreme financial hardship for families trying to help their children get well.

PANS and PANDAS occur when misdirected immune responses to infections cause inflammation of the brain, resulting in severe symptoms that can include but are not limited to motor and vocal tics, obsessive compulsive disorder, depression, anxiety, rage, and restricted eating.

“This disorder can cause a typically developing child’s behavior and actions to change drastically overnight,” Whelan explains. “Children afflicted with this disorder experience these debilitating symptoms for the first time when they get an infection that can trigger symptoms ranging from mild to severe. It can completely cripple the child and be frightening for their family.”

Passage of the legislation here was “a labor of love and a passion for two mothers (MA Coalition co-leaders Jennifer Vitelli, of Marshfield, and Melrose resident Sheilah Gauch), whom Whelan credits for their perseverance and determination to get the bill enacted.

However, they did not do it alone. “Jennifer and Sheilah locked arms with other parents and children, the New England PANS/PANDAS Association, state legislators, family, and friends in a truly unified effort,” Whelan says.

Vitelli is “absolutely thrilled and filled with gratitude for the House, Senate, and governor for listening to the many voices of children and families impacted by PANDAS/PANS,” she says. “They all worked together to be true heroes and champions for severely ill children in the commonwealth. We also want to recognize our lead House and Senate sponsors, Rep. Josh Cutler and Sen. Jason Lewis.”

This disorder can have a life-changing physical, emotional, and financial impact on families, and passage of the legislation ensures that private health insurers cover medically necessary treatment.

The legislation, coupled with the formation of the Advisory Council, “is literally changing the course of pediatric mental health here in Massachusetts,” according to Vitelli.  “With these actions, the Massachusetts Legislature has put the medical treatment for this horrible disease back where it belongs – between the patient and his or her medical provider.”

Massachusetts is the eighth state in the nation to pass such a law but the only one to establish an Advisory Council at the same time. “This was a true grass-roots effort by individuals whose unrelenting passion for helping children prevailed,” Whelan says.

Because of a lack of awareness of PANS and PANDAS, many children struggling with the disorder are misdiagnosed and treated for the symptoms rather than the root cause, which is the infection. “If children afflicted with this disorder receive the proper treatment – which can range from anti-inflammatories, antibiotics, and supplements all the way to needing IVIg therapy [that can help people with weakened immune systems or other diseases fight off infections] and plasmapheresis [a method of removing blood plasma from the body by withdrawing blood], then they can recover,” Whelan says.

A major hurdle until the legislation was passed was that doctor-recommended or prescribed IVIg treatment was not covered by insurance companies. “This meant that many families who have a child with PANS/PANDAS are not only dealing with a very sick child for whom they are desperately trying to get help, but also finding that once help is found they can’t afford treatment,” according to Whelan.

The average cost of an IVIg treatment depends on a child’s weight and normally ranges from $10,000 to $15,000.

“Passage of this bill relieves the financial burden and allows the child to get the proper treatment in a timely fashion,” Whelan says. “Without IVIg, many children can lose their childhood and may even end up in psychiatric hospitals. That is why this bill is such a lifesaver for so many Massachusetts children and their families.”