The Power of Us: Addressing PANS/PANDAS

By Sheilah Gauch, M.Ed, LICSW

 

scores of advocates and legislators on the steps of the great hall in the Mass. State House commemorating the passage of S.2984 and the creation of the PANS/PANDAS Advisory Council.

 

 

Commemorating the passage of S.2984 and the creation of the PANS/PANDAS Advisory Council at the Massachusetts State House

 

A Personal Mission

In August 2018, I went to my supervisor, Rebecca Altepeter,* and asked if she felt okay with me moving forward with supporting legislation for Pediatric Autoimmune Neuropsychiatric Syndrome/Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANS/PANDAS). PANS is an umbrella term for a host of triggers (viral/infectious/environmental) that create inflammation in the brain, leading to behavioral changes (OCD, food restriction, mood lability). PANDAS is a subset of PANS that is triggered by a strep infection. 

 

Rebecca was aware that both of my children suffered from this illness and knew of my passion to not only heal them, but spread awareness so that other children would not be missed and would be able to receive treatment. Still, as the principal of Dearborn Academy, I was not sure having a more public role advocating for this illness made sense. I was not surprised by the question she asked me: Will it help children? Truthfully, at the time, I had no idea what would happen. I had no experience with legislation of any kind, but felt there was no way it couldn’t help children, so I answered a resounding, “Yes!”

 

Sheilah and Karen

The impetus for me to take on an insurance mandate to support the most critically ill PANS/PANDAS children was a result of my dear friend Karen’s experience with her son.

 

As a single mother with two children with special needs, Karen was spending hours and hours of her work days trying to negotiate insurance denials for her son’s IVIG treatment. Her son needed a doctor-recommended treatment that she couldn’t access because of insurance denials.

 

I knew of many families who paid out-of-pocket for this life-saving treatment, but the treatment was so expensive ($30,000), and this was not realistic for my friend. We decided to approach our state representative and senator about an insurance mandate to help ensure insurance coverage of this important treatment.

 

Karen and I set about trying to establish the basics of advocacy – or what we thought were the first steps. We set up a Facebook page, a Gmail account, learned more about legislation, and got to know key people within the PANS/PANDAS community who might be interested in helping. We quickly learned that a similar bill had been through three previous sessions. We learned that we were not alone and soon began meeting others who had supported the previous efforts.

 

In July of 2019, there was a hearing for the legislation at the Massachusetts State House with the Joint Committee on Financial Services. At the hearing, we met amazing, brave caregivers who told their heartbreaking stories of pain, loss and frustration trying to find healing for their children. The hearing was incredibly emotional and also amazingly inspirational. I had never experienced anything like it. As a social worker, I was used to sitting with intense emotional pain. This hearing displayed the juxtaposition of these parents’ intense pain and suffering with the sheer will of the human spirit to save their children at any cost. This time, I was one of the parents, and not in a supporting role as a therapist but rather an invested stakeholder.

 

Building a Coalition

It was at the hearing that Karen and I met the four other parents with whom we linked arms to create the Massachusetts Coalition for PANS/PANDAS Legislation. We became a group of six mothers – all with incredibly sick children – who decided to come together to strategically attack the issue and get this legislation passed. As a group we met weekly. We had long Google chats – which our amazing new friend Jennifer introduced us all to – long before it became the norm with the pandemic. We would strategize for hours on next steps, until inevitably one of our PANDAS children would start to struggle in the background. At which point, our intense strategy sessions turned quickly into a support group.

 

On any given call, one of us would end up in a puddle of tears, utterly exhausted by the task of working, caring for our children, and fighting to save them. Having spent years alone trying to negotiate supporting our children, finding this amazing group of mothers was such a welcome relief. With them, you could make plans to change the system and, in the same call, break down and be vulnerable at what we were all carrying. Our camaraderie created a truly powerful group of intensely driven mom-advocates.

 

Founding members of the coalition; NE PANS Board of Directors; and Dr. Susan Swedo, Dr. Mark Pasternak, Dr. Melissa McCormack and Peggy Chapman

Over the two years the bill was moving through the legislative process, this small group of women started a path through a tangled world of politics that would inevitably get the bill over the finish line. We did not do it alone – that was the most amazing part of this journey. As we started down a path, we just kept reaching out to draw others in.

 

Our small group of six grew and changed through the years. Some of the original members’ children grew so ill, we moved to supporting them by sending them love, hope and trying desperately to find doctors to support them.

 

New coalition members joined and we were so fortunate to have amazing, kind, generous medical, research and mental health experts join our coalition as well. These professionals were true heroes – making time to advocate alongside the caregivers of the children they were desperately trying to help. This larger group joined together to write an update to the state’s CHIA report (used to give guidance on how much a bill might cost to insurance companies and the state if enacted) with current research and a stunning rebuttal to the insurance companies who tried to dismiss the bill outright.

 

Any amount of support was welcomed, and so many caregivers, family members and friends brought their unique gifts and strengths to aid in advocating for our children. Some people used their talents to connect with key legislators; some helped write emails. Others sent in pictures of their children and told their stories, and many more others came to the first ever in-person Awareness Day in 2019 at the State House and raised their collective voices to speak for their children. Still others helped us publicize and roll out the 2020 virtual Awareness Day. We developed connections throughout the state to help us at a moment's notice and pivot to what was needed to keep the bill alive and progressing.

 

Team Effort

This was truly a grassroots collaboration. Everyone’s voice was needed to make this happen. Everyone was essential and valued. The PANS/PANDAS community came together in such an inspiring way – the legislators truly could not look away. We were persistent, consistent and seemingly everywhere. We simply did not relent. We did not accept that our children should not have access to doctor-recommended treatment.

 

And yet, the feedback we received, over and over, was how much people enjoyed working with us. We maintained positivity, led with kindness and educated everyone we met. So, even in the midst of a pandemic, the PANS/PANDAS community of Massachusetts persevered.

 

The best part was that the legislators joined with us, creatively finding ways to not only get the insurance mandate passed, but adding an Advisory Council through the Department of Public Health to more closely examine and understand these illnesses. On January 1st, Governor Charlie Baker signed into law S.2984 which included not only the insurance mandate, but the PANS/PANDAS Advisory Council. A historic win for a group of caregivers, family members and children who overcame countless personal as well as legislative barriers to ensure that children – all children with PANS/PANDAS – have access to the care they desperately need.

 

* Dearborn Academy Head of School