SECTION 1. Chapter 111 of the General Laws is hereby amended by adding the following section:-
Section 238. (a) The department shall administer a comprehensive pancreatic cancer initiative to provide coordinated pancreatic cancer prevention, screening, education and support programs in the commonwealth. The department may develop and implement other initiatives regarding pancreatic cancer awareness, research and care that the department determines will further the purposes of this section.
(b) There shall be a pancreatic cancer advisory council within the department. The council shall be appointed and convened by the commissioner and shall consist of 13 members representing interdisciplinary fields including, but not limited to, oncology, palliative care, medicine, nursing, social work, pharmacy, spirituality and the area of patient and family caregiver advocacy, including health professionals having expertise treating pancreatic cancer patients and their families; provided, at least 1 member shall be a representative of the Pancreatic Cancer Action Network and 1 member shall be a representative of the American Cancer Society Cancer Action Network. The commissioner may appoint other members that the commissioner deems appropriate. Council members shall serve for a period of 3 years at the pleasure of the commissioner. The members shall elect a chair and vice chair whose duties shall be established by the council. The department shall provide a place for regular meetings of the council, which shall meet at least monthly.
Council members shall receive no compensation for their services but shall be allowed actual and necessary expenses in the performance of their council duties.
The council shall:
(1) Investigate and make recommendations for a system to certify and approve hospital systems that meet National Pancreatic Cancer Foundation criteria and post this information on an appropriate state website and on advocacy organization websites.
(2) Identify institutions and hospital systems which could meet the criteria in areas that are geographically underserved and provide them with incentives to develop the necessary resources to comply in order to assure that all residents have access to hospitals that meet the criteria.
(3) Investigate and make recommendations for the establishment of a multi-provider consortium to develop and disseminate amongst each other best practice algorithms, decision aids for electronic health record systems, and quality metrics for all phases of care in pancreatic cancer. The consortium shall partner with other entities including, but not limited to, patient organizations, National Institute of Health and the American Cancer Society Cancer Action Network to develop and maintain a portfolio of statewide clinical trials in pancreatic cancer.
(4) Disseminate targeted communications to primary care providers and their office staff to connect them with the consortium members and resources which are local to their practices.
(5) Utilize the local resources of the consortium members to fully operationalize existing state initiatives to identify existing cancer support services, survivorship care and counseling and to expand these initiatives to meet current needs.
(6) Develop and support the use in all hospitals of a standard consent form for pancreatic cancer patients to consent to donate their tissue samples without restrictions for tissue collection and banking for research.
(b) The department, in conjunction with the pancreatic cancer advisory council, shall conduct a comprehensive study to ascertain the prevalence and incidence of pancreatic cancer in the commonwealth, the unmet needs of persons with pancreatic cancer and their families, time-of-diagnosis statistics and likely risks for pancreatic cancer. Information collected by the study shall include, but not be limited to, the following:
(1) germline testing results;
(2) molecular tumor analysis in patients with metastatic disease;
(3) hospitals treating the highest volume of pancreatic cancer patients;
(4) information on stage of diagnosis;
(5) treatment rendered, including chemotherapy, radiation therapy, surgical treatment, neoadjuvant and adjuvant therapy;
(6) patient outcomes;
(7) number of patients diagnosed who did not receive any treatment or palliative care; and
(8) number of pancreatic resections performed at each hospital and associated outcomes.
(c) The department, in conjunction with the pancreatic cancer advisory council, shall develop and implement a statewide public education and community outreach program to inform the general public about genetic risks, signs, symptoms, and pre-malignant conditions associated with pancreatic cancer, including new-onset diabetes, and the availability of clinical trials for those with pancreatic cancer. In developing and implementing the program, the commissioner shall consult with similar programs including, but not limited to, anti-tobacco, obesity and other pre-malignant conditions associated with pancreatic cancer. The department shall add pancreatic cancer to the list of diseases that its programs target with counseling for tobacco discontinuation, diet and weight management.
SECTION 2. The commissioner of insurance shall survey health insurers in the commonwealth to ascertain coverage benefits of genetic testing for pancreatic cancer across health insurance plans, and present its findings to the committee on health care financing and the committee on financial services no later than June 30, 2022.
SECTION 3. The center for health information and analysis shall conduct a review and update of its mandated benefit review of pancreatic cancer screenings as reported in the center’s report titled “Mandated Benefit Review of S.B. 471: An Act relative to pancreatic cancer screening,” dated July 2014, including an update of the cost analysis for pancreatic cancer screening for high-risk individuals. The center shall present its findings and update to the committee on health care financing and the committee on financial services no later than June 30, 2022.
SECTION 4. The initial meeting of the pancreatic cancer advisory council shall convene no later than 60 days after the effective day of this act.
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