December 18: Coalition comments to the Administration regarding its recently released guidance on Section 1332 waivers
December 18: Coalition letter to the Administration and to all governors and insurance commissioners regarding recently proposed changes to Section 1332 waivers
December 17: Coalition statement in response to a ruling in the Texas v. United States case regarding the Affordable Care Act (ACA)
December 17: NORD comments to FDA regarding rare disease drug development and the role of pre-investigational new drug (IND) application meetings
December 14: NORD comments to FDA regarding patient-focused drug development
December 10: NORD comments to FDA regarding gene therapies for rare diseases
December 4: NORD comments in support of Ohio Senate Bill 56, legislation pertaining to step therapy protocol reform
December 3: Coalition comments to Delaware’s Department of Insurance in support of a proposed rule that would place restrictions on short-term, limited-duration health plans.
November 15: Coalition letter to the Senate in support of the MODERN Labeling Act (S.3519)
November 9: Coalition letter to the Council of the District of Columbia in support of a bill that would place restrictions on short-term, limited-duration plans and association health plans
October 26: NORD comments to Tennessee regarding its Section 1115 waiver
October 26: NORD letter in support of adding MPS I and Pompe to Indiana’s newborn screening panel
October 26: Coalition comments to CMS regarding Michigan’s Section 1115 waiver
October 24: Coalition statement encouraging CMS to withdrawn guidance allowing states to subsidize short-term, limited-duration plans starting in 2020
October 22: Coalition letter thanking Governor Wolf of Pennsylvania for vetoing HB2138
October 20: NORD comments to Virginia regarding its Section 1115 waiver
October 17: Coalition comments to CMS regarding Alabama’s Section 1115 waiver
October 16: Coalition letter thanking Congress for increasing funding for research
October 9: Coalition letter asking Congress to reauthorize loan repayment for pediatric subspecialists
October 2: Coalition letter thanking Congress for funding the National Neurological Conditions Surveillance System
October 1: Coalition letter to Secretary Azar regarding the patient protections in H.R.2077 that ought to be incorporated when implementing step therapy in Medicare Advantage plans
October 1: Coalition statement regarding Maine’s SPA to expand Medicaid
October 1: Coalition letter asking Secretary Azar and Administrator Verma to approve Maine’s State Plan Amendment (SPA) to expand Medicaid
September 26: Coalition letter to Secretary Azar regarding the recent decision to allow step therapy in Medicare Advantage plans
September 26: Coalition comments to South Dakota regarding its Section 1115 waiver
September 25: NORD comments to FDA regarding its definition of low-prevalence in a recent draft guidance
September 21: NORD comments to FDA regarding innovation and competition in the biological products marketplace
September 19: Coalition letter to the Senate regarding its recent bill on pre-existing conditions protections
September 11: NORD comments to FDA regarding patient-focused drug development
September 5: Coalition letter asking Congress to continue supporting the medical expense deduction
September 4: Coalition statement addressing the Senate’s recent bill on pre-existing conditions protections
August 31: NORD comments on Oklahoma’s Section 1115 waiver
August 31: Coalition comments to CMS regarding New Hampshire’s Section 1115 waiver
August 30: NORD comments on Alabama’s revised Section 1115 waiver
August 22: Coalition letter asking Congress to refrain from funding agriculture association health plans (AHPs)
August 17: NORD comments on Kentucky’s Section 1115 waiver
August 17: Coalition comments to CMS regarding Mississippi’s Section 1115 waiver
August 14: NORD comments to FDA regarding its Humanitarian Device Exemption (HDE) program
August 9: Coalition comments to CMS regarding New Jersey’s Section 1332 waiver
August 3: Coalition comments to CMS regarding Maryland’s Section 1332 waiver
August 1: Coalition statement expressing serious concerns with the Administration’s decision to expand the use of “short-term, limited-duration insurance
plans.”
July 24: Coalition letter to CMS regarding the recent court ruling on Kentucky’s work requirement in Medicaid
July 18: Coalition letter to insurance commissioners across the nation expressing concerns with copay accumulators
July 17: NORD comments to the Administration on its “Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs”
July 16: Coalition letter requesting Michigan to release additional data regarding its recently updated Section 1115 waiver
July 11: Coalition statement urging the Administration to resume paying the risk adjustment payments for 2017
July 10: Alliance for a Stronger FDA letter to Congress regarding FDA appropriations
July 6: Coalition comments to CMS regarding Maine’s Section 1332 waiver
June 27: NORD comments to New Hampshire regarding its Section 1115 waiver
June 26: NORD comments regarding Managed Care Organizations in Texas’ Medicaid program
June 26: Coalition comments to Washington regarding its short-term limited-duration medical plan rulemaking stakeholder draft
June 25: NORD comments to CMS regarding the inpatient prospective payment system (IPPS) proposed rule
June 21: NORD comments regarding funding for newborn screening in Texas’ Legislative Appropriations Request
June 20: Coalition letter in support of copay assistance in Massachusetts
June 19: Coalition statement regarding the expansion of Association Health Plans (AHPs)
June 19: Coalition letter in opposition to legislation in Pennsylvania that would seek to implement work requirements in Medicaid
June 14: Coalition comments to CMS regarding Ohio’s Section 1115 waiver
June 14: Sign-on letter from patient organizations in support of Michigan House Bill 5983, an act to establish a Rare Disease Advisory Council.
June 8: NORD letter of support for New Jersey Assembly Bill 2431, bipartisan legislation to limit out-of-pocket prescription costs.
June 8: Coalition comments regarding Wisconsin’s Section 1332 waiver
June 1: NORD comments to the American Medical Association expressing concerns with their resolution proposing reforms to the ODA
May 23: NORD letter in support of New Hampshire House Bill 1791, an act calling for prescriber communication with regard to biosimilars
May 21: NORD comparison of two versions of the Right to Try Act
May 21: NORD letter in support of Ohio Senate Bill 56, an act pertaining to step therapy protections
May 21: Coalition letter in opposition to the Right to Try Act (S.204)
May 18: NORD comments to FDA regarding the development and submission of proposed draft guidance relating to patient experience data
May 16: NORD comments in opposition to Rhode Island Senate Bill 2532, a bill pertaining to copay accumulators
May 14: Coalition letter urging CMS to rescind invitation to states to include work requirement policies in their 1115 demonstration waiver applications
May 8: Coalition letter to Congress requesting continued support for the defense health research programs funded through the Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense (DOD)
April 23: I Am Essential coalition comments to the Administration in opposition to its proposed rule regarding short-term, limited-duration plans (STLDs)
April 23: Coalition comments to the Administration in opposition to its proposed rule regarding short-term, limited-duration plans (STLDs)
April 23: Coalition letter to the Administration in opposition to its proposed rule regarding short-term, limited-duration plans (STLDs)
April 18: Sign-on letter from over 100 rare disease patient organizations in support of the RARE Act of 2018
April 18: NORD letter in support of Connecticut House Bill 5297, an act requiring continuing medical education in screening for rare gastrointestinal cancers
April 17: Coalition letter asking Congress to voice opposition to the proposed rule regarding short-term, limited-duration plans (STLDs)
April 12: Coalition statement expressing concerns with the 2019 Notice of Benefit and Payment Parameters final rule
April 11: Coalition letter in opposition to Michigan Senate Bill 897, a bill requiring the state to implement a work requirement in its Medicaid program
April 9: Coalition letter to Secretary Azar regarding Medicare Part D’s protected classes policy
April 4: Coalition comments regarding Colorado’s proposed permanent rule on cost-sharing
April 3: Coalition letter asking Governors to voice opposition to the proposed rule regarding short-term, limited-duration plans (STLDs)
April 2: NORD comments to the Alabama Medicaid Agency on its Section 1115 Demonstration Application
March 27: Coalition letter asking Congress to appropriate funds for the Pediatric Device Consortia (PDC) Grant Program
March 26: NORD letter in support of West Virginia House Bill 4524, an act calling for prescriber communication with regard to biosimilars
March 26: Coalition statement regarding Congress’ failure to include a market stabilization package in the spending deal
March 26: Coalition letter in opposition of Rhode Island Senate Bill 2532, an act that would prevent copay assistance from being applied to out-of-pocket expenses
March 22: Sign-on letter to the Senate from 106 patient and provider organizations in opposition to the Right to Try Act
March 19: Coalition letter regarding recent policy changes proposed by the administration
March 19: Updated NORD one-pager detailing our opposition to the Right to Try Act
March 19: Updated sign-on letter from over 100 patient and provider organizations in opposition to the Right to Try Act
March 13: Coalition statement calling on Congress to pass a market stabilization proposal
March 12: Sign-on letter from 78 patient organizations in opposition to the newest version of the Right to Try Act
March 6: Coalition comments on the Department of Labor’s proposed rule regarding Association Health Plans (AHPs)
March 6: NORD letter in support of Connecticut Senate Bill 398, an act relating to the enforcement of Connecticut’s step therapy law
March 5: Coalition comments to CMS regarding the Medicare prescription drug benefit and beneficiary access
February 27: Coalition letter to Congress regarding medical research within the fiscal year 2019 National Defense Authorization Act
February 23: Coalition letter to Congress in support of the Medical Nutrition Equity Act (S.1194/H.R.2587)
February 22: Coalition comments to CMS on Wisconsin’s Section 1115 BadgerCare demonstration waiver extension application
February 22: NORD comments to CMS on Wisconsin’s Section 1115 BadgerCare demonstration waiver extension application
February 22: Coalition comments to CMS on Mississippi’s Section 1115 revised demonstration waiver application
February 22: NORD comments to CMS on Mississippi’s Section 1115 revised demonstration waiver application
February 21: Coalition sign-on letter to Medicaid Directors on the importance of Medicaid formulary access for rare disease patients
February 20: NORD comments in support of Missouri House Bill 2407
February 20: Coalition statement in response to a proposed rule that would expand the use of “short-term limited duration” insurance plans
February 18: NORD comments to FDA regarding the designation of pediatric subpopulations
February 16: NORD comments to FDA regarding patient-focused drug development
February 16: NORD comments to the Food and Drug Administration (FDA) regarding targeted therapies
February 13: Coalition letter to Secretary Azar regarding Idaho’s recent insurance bulletin
February 13: NORD one-pager emphasizing our opposition to the Right to Try Act
February 12: NORD letter in support of Ohio Senate Bill 56, an act relating to step-therapy
February 12: NORD comments in support of Kansas Senate Bill 304, an act relating to step- therapy
February 6: NORD letter in support of Oregon House Bill 4156, an act relating to out-of-pocket costs
February 6: Coalition letter to Congress in opposition to the Right to Try Act
February 5: NORD comments to the Food and Drug Administration (FDA) regarding pediatric drug development guidance
February 5: Coalition comments to CMS on Arizona’s Section 1115 demonstration waiver request
February 5: NORD comments to CMS on Arizona’s Section 1115 demonstration waiver request
February 2: American Plasma Users (APLUS) coalition letter regarding the Patient Notification System (PNS)
January 30: Coalition letter to Congress regarding a desire for a hearing on ensuring patient safety and access in the midst of the Biologics Price Competition and Innovation Act (BPCIA)
January 30: Coalition comments to CMS on New Mexico’s Centennial Care 2.0 1115 Waiver Renewal Application
January 26: Coalition comments to CMS on Kansas’ KanCare 2.0 Section 1115 Demonstration Renewal Application
January 26: NORD comments to the Centers for Medicare and Medicaid Services (CMS) on Kansas’ KanCare 2.0 Section 1115 Demonstration Renewal Application
January 25: Coalition response to the Department of Health and Human Service’s (HHS) request for information (RFI) titled “Promoting Healthcare Choice and Competition Across the United States”
January 18: NORD letter in support of South Dakota SB 75, an act calling for prescriber communication with regard to biosimilars
January 17: NORD comments to the Centers for Medicare and Medicaid Services (CMS) on Next Generation Sequencing (NGS)
January 17: Coalition comments to the Centers for Medicare and Medicaid Services (CMS) on Next Generation Sequencing (NGS)
January 17: NORD letter in support of adding SMA to Georgia’s newborn screening panel
January 17: NORD letter to Pennsylvania’s Rare Disease Council regarding the state’s newborn screening panel
January 16: Coalition letter to the Centers for Medicare and Medicaid Services (CMS) regarding direct and indirect remuneration (DIR)
January 16: Coalition comments to the Centers for Medicare and Medicaid Services (CMS) regarding Medicare Part D
