Expanded Medicaid\/CHIP Continuous Eligibility for Children, Step Therapy Reforms, and<\/i>
Out-of-Pocket Prescription Cost Protections Among 2024 State Improvements<\/i><\/p>\n
Feb. 19, 2025, Washington, D.C.<\/span><\/span>\u00a0\u2014<\/strong> The National Organization for Rare Disorders (NORD\u00ae)\u00a0today issued its 10th annual\u00a0State Report Card<\/a>, which grades all U.S. states on nine critical issues that impact the more than 30 million Americans living with a rare disease. The 2024 State Report Card noted several key improvements that have the potential to increase patient access to affordable care and treatment.<\/p>\n “As state legislative sessions get underway, NORD’s latest State Report Card provides a crucial benchmark to monitor how well states serve their rare disease communities,” said NORD Chief Executive Officer\u00a0Pamela Gavin<\/span>. “NORD remains steadfast in our commitment to collaborate with all lawmakers, experienced and newly elected, to protect and enact policies that help people impacted by rare disease live their fullest and best lives. We will continue to build on our legacy of more than 40 years of nonpartisan advocacy for the 1 in 10 Americans and their families living with rare disease.”<\/p>\n Notable Improvements Step Therapy Reforms Out-of-Pocket Prescription Cost Protections Additional Accomplishments<\/b><\/p>\n “These achievements would not have been possible without the tremendous efforts of the rare disease community, state leaders, and lawmakers striving to improve the lives of patients and families impacted by rare disease,” said\u00a0Heidi Ross<\/span>, NORD Vice President,\u00a0Policy\u00a0and Regulatory Affairs. “We are dedicated to working with all policymakers to build on the collective progress achieved by our community and hope this State Report Card will serve as an important tool to advocate for the loved ones in each of our states affected by rare diseases.”<\/p>\n Policy Issue State Grades Medicaid Financial Eligibility<\/a> Medical Nutrition<\/a> Newborn Screening<\/a> Prescription Drug Out-of-Pocket Costs<\/a> Protecting Patients in State Medicaid Programs<\/a> Protecting Patients in State-Regulated Insurance<\/a> RDACs<\/a> Step Therapy (Fail First)<\/a> Telehealth<\/a> Learn more about how NORD evaluates each of these issues and view each state’s grade at\u00a0State Report Card<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":" Expanded Medicaid\/CHIP Continuous Eligibility for Children, Step Therapy Reforms, andOut-of-Pocket Prescription Cost Protections Among 2024 State Improvements Feb. 19, 2025, Washington, D.C.\u00a0\u2014 The National Organization for Rare Disorders (NORD\u00ae)\u00a0today issued … <\/p>\n
<\/b>Medicaid\/CHIP Continuous Eligibility for Children Rule
<\/i>Effective\u00a0January 1, 2024<\/span>, all states were required to provide 12 months of continuous eligibility for children under the age of 19, with limited exceptions. The new rule provided a dramatic increase in continuous eligibility and reduces bureaucratic barriers to care for children on Medicaid and the Children’s Health Insurance Program (CHIP). Additionally, five states (Colorado<\/span>,\u00a0Hawaii<\/span>,\u00a0Minnesota<\/span>,\u00a0New York<\/span>\u00a0and\u00a0Pennsylvania<\/span>) received approval for Section 1115 waivers to further extend continuous eligibility for qualifying individuals.<\/p>\n
<\/i>Illinois<\/span>\u00a0in 2024 passed a new law that banned step therapy, a practice that insurance plans use to require patients to try less expensive or alternative medicines before the drug prescribed by their physician. Overall, the number of states with some form of step therapy protection increased to more than 40 last year as\u00a0Vermont<\/span>\u00a0and\u00a0Wyoming<\/span>\u00a0passed patient-friendly reforms to their protocols. These actions help ensure step therapy requirements don’t delay or interfere with necessary care<\/p>\n
<\/i>Four states implemented out-of-pocket prescription drug cost protections in 2024 to help increase patient access to affordable treatment.\u00a0Rhode Island<\/span>\u00a0instituted a\u00a0$150<\/span>\u00a0cap on patient out of pocket costs for specialty tier prescription medicines, while\u00a0Vermont<\/span>,\u00a0Oregon<\/span>\u00a0and\u00a0Nevada<\/span>\u00a0banned copay accumulator adjustment programs. Thanks to these new laws, patients in these three states are guaranteed to have their copay assistance funds counted toward their deductible or out-of-pocket maximum, helping to reduce a patient’s financial burden.<\/p>\n\n
<\/b>NORD has published an annual State Report Card since 2015. To compile its latest edition, NORD evaluated performance data available through\u00a0November 2024<\/span>. These are just a few of the many complex issues that impact the lives of people living with rare disease and their families.<\/p>\n
A: 11, B: 31, C: 0, D: 9, F: 0
(Including\u00a0Washington, D.C.<\/span>)<\/p>\n
A: 2, B: 17, C: 18, D: 8, F: 5<\/p>\n
A: 12, B: 32, C: 7, D: 0, F: 0
(Including\u00a0Washington, D.C.<\/span>)<\/p>\n
A: 13, B: 13, C: 23, D: 0, F: 2
(Including\u00a0Washington, D.C.<\/span>)<\/p>\n
Pass: 37
Fail: 14
(Including\u00a0Washington, D.C.<\/span>)<\/p>\n
A: 16, B: 3, C: 3, D: 5, F: 24
(Including\u00a0Washington, D.C.<\/span>)<\/p>\n
Yes: 30
No: 20<\/p>\n
A: 22, B: 7, C: 5, D: 2, F: 15<\/p>\n
Pass: 40
Fail: 10<\/p>\n