Latest US genetics policy information. Information posted is for educational purposes only. Posts/follows/reposts/likes≠endorsement. Run by @nccrcg.
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ALT GPH, Genetics Policy Hub. Enacted - TN SB 1791. An Act relative to newborn screening. “All infants born in Tennessee must be screened for specific genetic, metabolic, or other heritable conditions, including, but not limited to, conditions listed on the Recommended Uniform Screening Panel (RUSP).” “Newborn screening for a condition listed on the RUSP must begin no later than thirty-six (36) months after the condition is added to the RUSP, effective July 1, 2024.” @geneticspolicy | geneticspolicy.nccrcg.org
ALT GPH, Genetics Policy Hub. Weekly Wrap-Up. Posts from the week about proposed and enacted genetics legislation and regulation from across the USA
ALT GPH, Genetics Policy Hub. Introduced - NJ A 4163. An Act concerning health insurance coverage for biomarker testing. “Biomarker testing shall be covered for the purposes of diagnosis, treatment, appropriate management, or ongoing monitoring of a disease or condition of a subscriber when the test is supported by medical and scientific evidence.” @geneticspolicy | geneticspolicy.nccrcg.org
ALT GPH, Genetics Policy Hub. VA HB 252. A Bill relating to sickle cell disease. “Creates a statewide registry of sickle cell disease patients to be maintained by the State Health Commissioner. The bill establishes: Standards and selection criteria for the collection of sickle cell disease information; Penalties for unauthorized use of data from such registry; and Notice requirements for patients whose personal identifying information has been submitted to such registry.” “The bill also directs the Commissioner to submit an annual report of the information obtained from the sickle cell disease registry to the Governor and the General Assembly by December 1 of each year.” @geneticspolicy | geneticspolicy.nccrcg.org
ALT GPH, Genetics Policy Hub. Enacted - VA HB 252. An Act relating to sickle cell disease; statewide registry; collection of sickle cell disease case information. An Act relating to sickle cell disease; statewide registry; collection of sickle cell disease case information. @geneticspolicy | geneticspolicy.nccrcg.org
ALT GPH, Genetics Policy Hub. Introduced - VA HB 820. A Bill relating to Department of Medical Assistance Services; annual review of medication and treatment for sickle cell disease; report. “The VA Department of Medical Assistance Services shall conduct an annual review of all medications, services, and forms of treatment for sickle cell disease available to individuals with a diagnosis of sickle cell disease who are eligible for coverage under the state plan for medical assistance.” “The purpose of the annual review is to determine if the available covered medications, treatments, and services are adequate to meet the needs of enrollees with a diagnosis of sickle cell disease and whether the Department should seek to expand coverage for additional medications, treatments, or services.” @geneticspolicy | geneticspolicy.nccrcg.org
ALT GPH, Genetics Policy Hub. VA HB 820. An Act relating to Department of Medical Assistance Services; annual review of medication and treatment for sickle cell disease. “The VA Department of Medical Assistance Services shall conduct an annual review of all medications, services, and forms of treatment for sickle cell disease available to individuals with a diagnosis of sickle cell disease who are eligible for coverage under the state plan for medical assistance.” “The purpose of the annual review is to determine if the available covered medications, treatments, and services are adequate to meet the needs of enrollees with a diagnosis of sickle cell disease and whether the Department should seek to expand coverage for additional medications, treatments, or services.” @geneticspolicy | geneticspolicy.nccrcg.org
ALT GPH, Genetics Policy Hub. Weekly Wrap-Up. Posts from the week about proposed and enacted genetics legislation and regulation from across the USA.
ALT GPH, Genetics Policy Hub. IL Executive Order 2024-01. Executive Order to Advance Financing and Access To Sickle Cell Disease Treatment and Other High-Cost Drugs And Treatment In Illinois. “The Advisory Council on Financing and Access to Sickle Cell Disease Treatment and Other High-Cost Drugs and Treatment is established.” “The Advisory Council shall advise the Illinois Department of Healthcare and Family Services (HFS) in the development of payment models and financing structures for sickle cell disease treatment and other high-cost drugs and treatment that support equitable access and contribute to national efforts to formulate solutions.” @geneticspolicy | geneticspolicy.nccrcg.org
ALT GPH, Genetics Policy Hub. Introduced - LA HB 883. An Act relative to sickle cell disease. “A healthcare provider may execute an agreement to provide data to an association or entity that assists patients diagnosed with sickle cell disease in obtaining care and other related resources.” @geneticspolicy | geneticspolicy.nccrcg.org
ALT GPH, Genetics Policy Hub. Introduced - LA HB 869. An Act relative to continuing education requirements for certain physicians and physician assistants. “The Louisiana State Board of Medical Examiners (LSBME) shall require physicians and physician assistants practicing emergency medicine to complete a three-hour continuing education course on the treatment of sickle cell disease every three years.” @geneticspolicy | geneticspolicy.nccrcg.org
ALT GPH, Genetics Policy Hub. Introduced - NY S 8921. An Act in relation to directing the commissioner of health to conduct a sickle cell disparity study. “The Commissioner of Health is directed to conduct a sickle cell disparity study to determine whether there is a disparity between treatment accessibility and affordability for persons with sickle cell disease.” “Not later than 18 months after the effective date of this Act, the results of such study shall be posted on the open health data section of the Department of Health's website.” @geneticspolicy | geneticspolicy.nccrcg.org
ALT GPH, Genetics Policy Hub. Enacted - VA HB 255. An Act relating to adult wellness screening; sickle cell anemia or sickle cell trait. “In order to prevent disability or death, every adult resident of Virginia may be offered screening tests for sickle cell disease or sickle cell trait, with an emphasis on individuals of reproductive age and individuals who are unaware of their sickle cell trait status.” “The health care professional in charge of the adult's annual health examination may cause such tests to be performed, and if performed, shall provide education and appropriate counseling regarding the test results.” @geneticspolicy | geneticspolicy.nccrcg.org
ALT GPH, Genetics Policy Hub. Weekly Wrap-Up. Posts from the week about proposed and enacted genetics legislation and regulation from across the USA.
ALT GPH, Genetics Policy Hub. Introduced - NY S 8922. An Act in relation to requiring sickle cell disease coursework or training. “Every medical student, medical resident and physician assistant student in the state as part of the curriculum provided by medical schools, medical residency programs and physician assistant programs shall complete coursework or training regarding awareness and treatment of sickle cell disease.” @geneticspolicy | geneticspolicy.nccrcg.org
ALT GPH, Genetics Policy Hub. Introduced - NY S 8923. An Act in relation to establishing a sickle cell education and mapping program. “The NY Commissioner of Health is hereby authorized to create a sickle cell disease education and mapping program.” “This program is established to promote the screening and detection of sickle cell disease, educate the public regarding sickle cell disease, provide counseling and referral services and map locations of occurrence of sickle cell disease.” @geneticspolicy | geneticspolicy.nccrcg.org
ALT GPH, Genetics Policy Hub. Introduced - NY S 8924. An Act to amend the public health law. “The NYS Health Equity Council shall issue mandates to the Commissioner of Health for: The establishment of regional sickle cell centers to provide team-based, integrated care including pain management, mental health, trait testing, and genetic counseling; The implementation of workforce development in primary and specialty care with a focus on sickle cell disease; and The support of long-term surveillance of sickle cell disease complications, mortality, health services utilization, and cost through-out the lifespan of sickle cell disease patients.” @geneticspolicy | geneticspolicy.nccrcg.org
ALT GPH, Genetics Policy Hub. Introduced - AL SB 256. An Act Relating to newborn screening. The Act shall: “Require conditions on the Recommended Uniform Screening Panel (RUSP) to be included on the Newborn Screening Panel; Provide a timeline for the addition of RUSP-approved condition on the panel; Require the State Board of Health to adopt rules relating to the newborn screening program; and Condition testing for heritable diseases and conditions by the State Laboratory on the availability of funding.” @geneticspolicy | geneticspolicy.nccrcg.org
ALT GPH, Genetics Policy Hub. Introduced - MN HF 5050. An Act relating to health insurance. “Effective January 1, 2025, a health plan must include coverage for clinical genetic testing for an inherited gene mutation that is recommended by a health care provider for enrollees with a personal or family history of cancer.” “’Clinical genetic testing’ means germline multigene testing for an inherited mutation associated with an increased risk of cancer performed in accordance with evidence-based clinical practice guidelines.” @geneticspolicy | geneticspolicy.nccrcg.org
ALT GPH, Genetics Policy Hub. Weekly Wrap-Up. Posts from the week about proposed and enacted genetics legislation and regulation from across the USA
ALT GPH, Genetics Policy Hub. Introduced - MA S 2640. An Act to improve sickle cell care. “There is established within the MA Department of Public Health: A Statewide Steering Committee on Sickle Cell Disease to enhance access to services for individuals with sickle cell disease and the coordination of health care services; and establish and implement a system the provides information on the sickle cell trait. The Sickle Cell Disease Detection and Education program to: (1) promote screening and detection of sickle cell disease, especially among unserved or underserved populations; (2) educate the public regarding sickle cell disease and the benefits of early detection; and (3) provide counseling and referral services.” @geneticspolicy | geneticspolicy.nccrcg.org
ALT GPH, Genetics Policy Hub. Introduced - US HR 7432. Sickle Cell Disease Comprehensive Care Act. “To amend title XIX of the Social Security Act to enable State Medicaid programs to provide comprehensive, coordinated care through a health home to individuals with sickle cell disease, beginning January 1, 2025.” @geneticspolicy | geneticspolicy.nccrcg.org