Taking Steps to Understand PANDAS

Of the thousands of bills that were debated during the 2012 legislative session, one bill that was unanimously supported by the State Senate focused on a little-known disorder that affects certain children. Pediatric Autoimmune Neuropsychiatric Disorders Associated with Steptococcal infections (PANDAS) is characterized by the dramatic onset of neuropsychiatric symptoms including a combination of obsessions, compulsions, tics and other symptoms. It is believed to be caused when the immune system produces an antibody that interacts with neurons in the brain.

Introduced by the Insurance and Real Estate Committee, Senate Bill 206, “An Act Concerning A Study Of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections,” would improve the understanding of this disorder in our state. Specifically, it would require the state Commissioner of Public Health to compile a study of PANDAS including research, diagnosis, and treatments that have been developed in other states and countries and create an evaluation of how the medical community recognizes this disorder. This commissioner will be required to submit this report to the Public Health and Insurance committees of the General Assembly by January 1, 2013.

When I stood up to speak during the debate, State Senator Joe Crisco, chairman of the Insurance Committee and proponent of the bill, looked over at me with exasperation as if I was going to oppose the bill. Instead, I rose to speak in support of the legislation. I believe it will take the appropriate and responsible first steps toward understanding this disorder in much the same way that the legislature voted in favor of learning more about autism a few years ago. Since then, our state has become a leader in autism awareness and rights.

I am also familiar with a young person from our area who was diagnosed with the disorder and had to travel to Chicago to visit one of the few doctors in our country who could identify it and create a course of treatment. One of these is called intravenous immunoglobulin, or IVIG, which contains an antibody extracted from the plasma of over one thousand blood donors. It is a lengthy treatment, but evidence exists that it can make a difference in the lives of some patients.

One resource that many parents have relied upon is the PANDAS Resource Network, a national non-profit organization dedicated to fighting the disorder through a combination of research, education and awareness. To learn more, please visit their website at www.pandasresourcenetwork.com.

Like the well-known autism awareness initiative, I believe that our state can become a leader in PANDAS research and awareness. The legislature must play a role in helping the medical industry understand this and other disorders, including attracting private funding and grants and forming public-private partnerships to improve public health and tackle little known diseases and disorders. While this bill passed unanimously in the State Senate, it unfortunately did not see a vote in the House of Representatives. Like many other bills, it will likely come up again next year, and I am hopeful that legislators will support this important issue. For more information about this bill, please visit the General Assembly website at www.cga.ct.gov and search for S.B. 206.