(a)The purpose of the advisory council shall be to advise the General Assembly and other state agencies and departments, as appropriate, on the needs of individuals with rare diseases living in Georgia.
(b)The advisory council shall conduct the following activities to benefit rare disease patients in Georgia:
(1)Convene public hearings, make inquiries, and solicit comments from the general public in Georgia to assist the advisory council with a first-year landscape or survey of the needs of rare disease patients, caregivers, and providers in the state;
(2)Consult with health care experts to develop policy recommendations to improve patient access to quality rare disease specialists, affordable and comprehensive health care coverage, better access to clinical trials, expansion of telehe
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(a) The purpose of the advisory council shall be to advise the General Assembly and other state agencies and departments, as appropriate, on the needs of individuals with rare diseases living in Georgia. (b) The advisory council shall conduct the following activities to benefit rare disease patients in Georgia: (1) Convene public hearings, make inquiries, and solicit comments from the general public in Georgia to assist the advisory council with a first-year landscape or survey of the needs of rare disease patients, caregivers, and providers in the state; (2) Consult with health care experts to develop policy recommendations to improve patient access to quality rare disease specialists, affordable and comprehensive health care coverage, better access to clinical trials, expansion of telehealth services, relevant diagnostics, timely treatment and to make recommendations to state agencies and insurers that provide services to persons with a rare disease on the impact of prior authorization, cost-sharing, tiering, or other utilization management procedures on the provision of treatment and care for patients; (3) Advise the Department of Community Health with respect to state health plans, including Medicaid, PeachCare for Kids, and the state health benefit plan, in their review of products or medications for the treatment of rare and orphan diseases and drugs or biological products within the emerging fields of personalized medicine and gene-editing therapeutics. The Department of Community Health shall seek input of the advisory council regarding rare diseases and personalized medicine to address topics including, but not limited to, the impact of coverage, cost-sharing, tiering, and utilization management on access to rare disease therapies; (4) Make recommendations to the Newborn Screening and Genetics Advisory Committee established pursuant to subsection (i) of Code Section 31-12-6 as it relates to rare diseases; (5) Publish on the advisory council's website a list of existing, publicly accessible resources on research, diagnosis, treatment, and educational materials for health care providers relating to the rare diseases in Georgia; and (6) Research and identify best practices to reduce health disparities and achieve health equity in the research, diagnosis, and treatment of rare diseases in Georgia. (c) The advisory council may solicit and accept donations, gifts, grants, property, or matching funds from any public or private source for the use by the council in conducting the activities required pursuant to subsection (b) of this Code section.