Major win for PANDAS/PANS families as insurance coverage and DPH Advisory Council added to Health Care Bill!

I’m very happy to report that our legislation to provide health insurance coverage for PANDAS/PANS treatment has been included in the Health Care bill released a short time ago by the Conference Committee. That would be amazing enough by itself, but it also includes our amendment to create a PANDAS/PANS Advisory Council at the Mass. Department of Public Health.

These steps together represent a true breakthrough for thousands of Massachusetts families afflicted with this disease.

For those who are not familiar, PANDAS & PANS are related pediatric autoimmune disorders which strike previously healthy children, typically between the ages of two and twelve.The result can be devastating to the child, with acute and dramatic onset of symptoms like obsessive-compulsive disorder, extreme anxiety, angry rages, trouble sleeping, bodily tics, hallucinations, and more.

Children suffering from PANDAS/PANS frequently cannot attend school for extended periods and home life is profoundly disrupted. Emergency room visits are often needed due to sudden aggressive behaviors and psychiatric hospitalization may be required for severely afflicted children.

The impact on the family can also be devastating, both from an emotional and financial point of view. While mild to moderate cases can usually be treated successfully with antibiotics or anti-inflammatory therapy medications, more severe cases may require treatment known as IVIG therapy.

Sadly, even though this course of treatment is recommended by doctors and medical experts, most private insurance companies refuse to cover IVIG, or else engage in a protracted denial and appeals process. Tragically, this puts the child at risk of further decline and potential long-term disability as their brain inflammation remains untreated.

This puts families in a terrible position of paying out-of-pocket, which can run many tens of thousands of dollars. During our public hearing I heard stories about parents re-mortgaging their homes, maxing out credit cards and ending up more than $100,000 in debt just to make sure their kids get the proper treatment.

Health insurance is supposed to cover you when you get sick. But when it comes to PANDAS it was not.Today we took a major step forward to change that in Massachusetts. This will have ramifications not just here but across the county in the many states that do not yet ensure PANDAS health coverage.

I am grateful to all the House and Senate Conferees for including this language, and especially Majority Leader Ron Mariano.

Thanks to former colleague Paul Brodeur (now Mayor Brodeur) who originally filed the House bill. I was pleased to take the baton from him as lead House sponsor this term, but we certainly would not have gotten here today without his efforts. Also thanks to Rep. James Murphy, former Rep. Dan Cullinane who helped usher the bill through the various legislative hurdles. Former Rep. John Scibak was also one of the early PANDAS supporters in the House. Rep. Carmen Gentile filed a companion bill and Rep. Kate Lipper Garabedian ably succeeded Rep. Brodeur in advocating for the bill. Apologies to anyone I have missed!

The real champions here though are the parents and advocates who worked so hard to build awareness, raise support and collaborate to push this legislation forward. I recall back in my first term attending a meeting about PANDAS held at the Winsor House in Duxbury. This was one of the first times I learned about this issue and it has stuck with me ever since.

Making these kinds of changes can sound like a no-brainer, but it takes a lot of effort and coalition building, especially when you are talking about health insurance policy. A special shout-out to Jennifer Vitelli and Sheila Gauch who led this citizen effort. They were amazing and had help from a lot of good people too. None of this would have happened without their energy and drive.

Next steps? The Conference Committee report is expect to be adopted by the House and Senate, likely tomorrow and then head to the Governor’s desk. We of course will be urging him to sign this measure. I will provide a further update when we get to that step.

Photos: It’s a lengthy process getting to this point. Here are some photos from the journey along the way!