MovingForward

Hi All, We just wanted to update everyone on the progress of the Massachusetts PANDAS/PANS legislation. For us, this legislation boils down to one thing-Choice. While we recognize that IVIg is not the only treatment option for children with PANDAS/PANS, research demonstrates that it can be a valuable part of a multi-pronged treatment approach. Our motivation in pursuing this legislation stems from our year-long battle with our insurance company to provide our child with the treatment recommendations of our team of doctors. Despite the support of our medical team, our child was repeatedly denied access to this therapeutic option. We are fortunate in that we are surrounded by an amazing, supportive, and creative community that helped us to persevere until we finally obtained coverage. We believe it is unethical and inhumane that insurance companies are able dictate treatment options and overrule the therapeutic recommendations of doctors. Families in crisis shouldn’t be shouldered with the additional burden of fighting for medical treatment, while they are struggling to heal their children. We hope that by pursuing this legislation we can help out other children and families struggling to make sense of this disorder and pay forward the kindnesses that have been shown to us. For those of you that don’t live in Massachusetts, perhaps this legislation will serve as a model or impetus for similar bills in other states. We are currently waiting for the bill to be assigned to a Committee. Once it is assigned, a schedule will be determined, and we will have an opportunity to tell our stories. From what we have been told this will be the time to draw in support from as many circles as possible. Ultimately, we are very happy with the momentum that has built over the last week. In three days, we were able to get 18 legislative co-sponsors for the bill. Representative Scibak reported that he received many supportive communications from outside of his district (including contact from outgoing Senator Kerry’s office). While we have been told that there is no direct correlation between co-sponsor numbers and the final disposition of the bill, it makes sense that the more people on board from the beginning, the better the momentum you carry forward. The list of co-sponsors is a Pan-Massachusetts contingent with representation from Western, Central, Southeastern, North Shore, South Shore, and Boston-area legislators. We have representatives from 9 of Massachusetts’ 14 counties. We currently lack representation in Berkshire, Hampden, and the Cape and Islands (Barnstable, Dukes, and Nantucket Counties). The following is a list of co-sponsors of the bills consisting of 15 House Representatives and 3 Senators (Rosenberg, DiDomenico, and Spilka). An Act relative to insurance coverage for PANDAS/PANS: John W. Scibak 2nd Hampshire Peter V. Kocot 1st Hampshire John D. Keenan 7th Essex Stanley C. Rosenberg Hampshire, Franklin and Worcester Ellen Story 3rd Hampshire Josh S. Cutler 6th Plymouth Garrett J. Bradley 3rd Plymouth James M. Cantwell 4th Plymouth Thomas J. Calter 12th Plymouth Sal N. DiDomenico Middlesex and Suffolk Carolyn C. Dykema 8th Middlesex Walter F. Timilty 7th Norfolk James M. Murphy 4th Norfolk Rhonda Nyman 5th Plymouth Karen E. Spilka Second Middlesex and Norfolk John J. Lawn, Jr. 10th Middlesex Marjorie C. Decker 25th Middlesex Steven M. Walsh 11th Essex An Act designating PANDAS/PANS Awareness Day John W. Scibak 2nd Hampshire Peter V. Kocot 1st Hampshire John D. Keenan 7th Essex Stanley C. Rosenberg Hampshire, Franklin and Worcester Ellen Story 3rd Hampshire Josh S. Cutler 6th Plymouth Garrett J. Bradley 3rd Plymouth James M. Cantwell 4th Plymouth Thomas J. Calter 12th Plymouth Carolyn C. Dykema 8th Middlesex Walter F. Timilty 7th Norfolk James M. Murphy 4th Norfolk Rhonda Nyman 5th Plymouth Karen E. Spilka Second Middlesex and Norfolk John J. Lawn, Jr. 10th Middlesex Marjorie C. Decker 25th Middlesex Steven M. Walsh 11th Essex The following is a link to names, email addresses, and phone numbers for members of the Massachusetts House of Representatives and Senate. Please feel free to call the above legislators to thank them for their support. In the future it will be helpful to call the other representatives that have not yet signed onto the bill to obtain their support. http://www.malegislature.gov/people/house http://www.malegislature.gov/People/Senate Thanks for listening. Heather and Jacob