Senate Passes Bill to Require Insurance Coverage for Children with PANS/PANDAS

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On October 29, the Massachusetts Senate passed legislation that would mandate insurance coverage for children with pediatric acute-onset neuropsychiatric syndromes (PANS) and pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS). The bill, An Act relative to insurance coverage for PANDAS/PANS, would ensure that children with PANS or PANDAS receive optimal care by helping patients and their families access specialized diagnostic tests and effective treatments.

PANS/PANDAS are life-changing conditions, often triggered by infections such as strep throat, that can occur suddenly in previously healthy children between the ages of two and twelve. Theses conditions result in marked detrimental personality changes—typically including obsessions and compulsions, extreme anxiety, angry rages, trouble sleeping, difficulty with schoolwork, bodily tics and urinary frequency or incontinence.

PANS/PANDAS are challenging conditions. Obtaining a correct diagnosis can be difficult because the symptoms mimic other illnesses and treatment for PANS/PANDAS is not always covered by insurance. This legislation would change that by ensuring that treatment for PANS/PANDAS is covered by insurance in the Commonwealth. Medical professionals would be authorized to prescribe and execute courses of treatment for PANS/PANDAS patients, including intravenous immunoglobulin therapy (IVIG) in the most acute cases, in order to help children receive the best possible care.

“Equity in healthcare continues to be a priority of the Massachusetts Senate,” said Senate President Karen Spilka (D-Ashland). “This bill will provide parents peace of mind by removing a barrier that has too often prevented these conditions from being treated. I am grateful to Senators Rodrigues, Friedman and Lewis for their work on this issue.”

“This bill protects the most vulnerable among us by ensuring children and families struggling with this illness receive the care they need,” said Senator Michael J. Rodrigues (D-Westport), Chair of the Senate Committee on Ways and Means. “I applaud Senator Friedman and Senator Lewis for their hard work on this vital legislation, and my colleagues in the Senate for supporting these families during this challenging time.”

“This legislation is a common sense step in the right direction toward ensuring that families that have children with this challenging condition receive equitable access to the treatment they need and deserve,” said Senator Cindy F. Friedman (D-Arlington), co-chair of the Joint Committee on Health Care Financing. “This bill also builds on the Senate’s ongoing commitment to putting patients first by continuing to place treatment decisions in the hands of medical professionals, not insurance companies. I commend Senate President Spilka for continuing to lead the way on expanding access to health care for all as well as my fellow Senate colleagues who played an integral role in passing this bill.”

"With the passage of this legislation, children and families struggling with the debilitating impacts of this terrible illness will no longer also have to struggle to access the treatment that they desperately need," said Senator Jason Lewis (D-Winchester), the lead sponsor of the bill. "I want to thank my constituent Sheilah Gauch and her brave children Abby and Ian who, along with other amazing advocates, made this legislative victory possible."

"Experts continue to learn more about the causes and treatments for pediatric autoimmune neuropsychiatric disorders like PANDAS and PANS. This bill aims to help children connect with the health care professionals and medicines that they need," said Senate Minority Leader Bruce Tarr (R-Gloucester).

"This legislation means that the most acute and critically ill PANDAS/PANS patients will not have to live a tortured life of illness and symptom management. The Senate has put the medical treatment for this horrible disease back where it belongs: between the patient and their medical provider,” said Sheilah Gauch and Jennifer Vitelli, co-leaders with the Massachusetts Coalition of PANDAS/PANS Legislation. “It has been inspiring and incredibly emotional for our families to have their children's voices heard by both the Senate and the House during this session. To listen to children, especially during this pandemic, shows the true character of those who serve the Commonwealth. We look forward to getting this bill to the Governor’s desk before the end of the year.”

The bill now moves to the House of Representatives for consideration.