Amendment #9 to H4888

PANDAS/PANS Advisory Council

Mr. Cutler of Pembroke moves to amend the amendment by adding the following section:

"SECTION XXXX.

SECTION 1. Chapter 111 of the General Laws is hereby amended by adding the following section:

Section 238. Notwithstanding any general or special law to the contrary, there shall be established Advisory Council on pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS) and pediatric acute neuropsychiatric syndrome (PANS) within the Department of Public Health. Said advisory council shall advise the Commissioner of Public Health on research, diagnosis, treatment, and education relating to the disorder and syndrome.

Said advisory council shall be comprised of the following members, who shall be appointed by the Commissioner of Public Health within 60 days after the effective date of this act. Advisory Council Members shall serve a term of 3 years;

One physician specialized in infectious diseases, licensed and practicing in the state with experience treating persons with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections and pediatric acute neuropsychiatric syndrome and the use of intravenous immunoglobulin. One pediatrician licensed and practicing in the state who has experience treating persons with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection pediatric acute neuropsychiatric syndrome. One child psychiatric practitioner with experience treating persons with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections and pediatric acute neuropsychiatric syndrome. Two health care provider/medical specialist licensed and practicing in the state who have experience in treating persons with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections and pediatric acute neuropsychiatric syndrome. One medical researcher with experience conducting research concerning pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections, pediatric acute neuropsychiatric syndrome, obsessive-compulsive disorder, tic disorder, and other neuro-inflammatory disorders. One representative of a Massachusetts non-profit PANDAS/PANS Advocacy Organization. One representative of a professional organization in the state for school nurses. Two parents with a child who has been diagnosed with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections or pediatric acute neuropsychiatric syndrome. One social worker licensed and practicing in this state who has experience working persons & families impacted by pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections and pediatric acute neuropsychiatric syndrome. One Special Educator Administrator who has experience working persons & families impacted by pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections and pediatric acute neuropsychiatric syndrome. and three additional members as appointed by the Commissioner.

The Commissioner of Public Health, or his or her designee, shall be an ex-officio, nonvoting member. Any member of the advisory council appointed under this Section may be a member of the General Court. Members shall receive no compensation for their services.

The Commissioner of Public Health shall schedule the first meeting of the advisory council, which shall be held not later than 90 days after the effective date of this act. A majority of the council members shall constitute a quorum. A majority vote of a quorum shall be required for any official action of the advisory council. The advisory council shall meet upon the call of the chairperson or upon the request of a majority of council members.

The advisory council shall issue a report to the General Court annually with recommendations concerning: practice guidelines for the diagnosis and treatment of the disorder and syndrome; development of screening protocol; 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; outreach to educators and parents to increase awareness of the disorder and syndrome; and development of a network of volunteer experts on the diagnosis and treatment of the disorder and syndrome.

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

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 said treasurer on behalf of the commonwealth, and be expended by the advisory council in accordance with council bylaws and state and federal law."

Additional co-sponsor(s) added to Amendment #9 to H4888

PANDAS/PANS Advisory Council