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The 193rd General Court of the Commonwealth of Massachusetts

Section 242: Advisory council on pediatric autoimmune neuropsychiatric disorder; membership and terms; annual report; cooperation from state agencies; funding

Section 242. (a) There shall be an advisory council on pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections and pediatric acute neuropsychiatric syndrome within the department, which shall advise the commissioner on research, diagnosis, treatment and education relating to the disorder and syndrome, hereinafter referred to as PANDAS/PANS.

(b) The council shall consist of the commissioner, or a designee, who shall be an ex-officio, nonvoting member and the following members appointed by the commissioner: 1 physician specializing in infectious diseases, licensed and practicing in the commonwealth with experience treating persons with PANDAS/PANS and the use of intravenous immunoglobulin; 1 pediatrician licensed and practicing in the commonwealth who has experience treating persons with PANDAS/PANS; 1 child psychiatric practitioner with experience treating persons with PANDAS/PANS; 2 health care providers licensed and practicing in the commonwealth who have experience in treating persons with PANDAS/PANS; 1 medical researcher with experience conducting research concerning PANDAS/PANS, obsessive-compulsive disorder, tic disorder and other neuro-inflammatory disorders; 1 representative of a non-profit PANDAS/PANS advocacy organization in the commonwealth; 1 representative of a professional organization in the commonwealth for school nurses; 2 parents with a child who has been diagnosed with PANDAS/PANS; 1 social worker licensed and practicing in the commonwealth who has experience working with persons and families impacted by PANDAS/PANS; 1 special education administrator who has experience working with persons and families impacted by PANDAS/PANS; and 3 additional persons.

Each member of the council shall serve for a term of 3 years and shall serve without receiving compensation. Any member of the advisory council appointed by the commissioner may be a member of the general court. The advisory council shall meet upon the call of the chair or upon the request of a majority of council members.

(c) The advisory council shall issue a report to the general court annually with recommendations concerning: (i) practice guidelines for the diagnosis and treatment of the disorder and syndrome; (ii) development of screening protocols; (iii) mechanisms to increase clinical awareness and education regarding the disorder and syndrome among physicians, including pediatricians, school-based health centers and providers of mental health services; (iv) outreach to educators and parents to increase awareness of the disorder and syndrome; and (v) development of a network of volunteer experts on the diagnosis and treatment of the disorder and syndrome.

(d) The advisory council may request from all state agencies such information and assistance as the council may require.

(e) The advisory council may accept and solicit funds, including any gifts, donations, grants or bequests or any federal funds, for any of the purposes of this section. Such funds shall be deposited in a separate account with the state treasurer, be received by the treasurer on behalf of the commonwealth and be expended by the advisory council in accordance with the law.