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Position Statements

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October 12: Coalition letter urging the House to adopt the Senate Appropriations Committee’s funding levels for outreach and enrollment in marketplace coverage under the Affordable Care Act

October 12: Coalition statement regarding President Trump’s executive order released today

September 29: Coalition letter urging Congress to reject any proposal to increase Medicare Part D copayments for beneficiaries receiving the low-income subsidy (LIS)

September 25: NORD comments to the Institute for Clinical and Economic Review (ICER) on a proposed adaptation to its value framework for the assessment of treatments for ultra-rare conditions

September 22: Coalition statement regarding the Senate Finance Committee Hearing to Consider the Graham-Cassidy-Heller-Johnson Proposal

September 19: Coalition letter to the House Energy and Commerce Committee in opposition to S.204, the Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act of 2017, and H.R. 878, the Right to Try Act of 2017

September 18: Coalition statement in opposition of Graham/Cassidy Bill

September 14: Sign-on letter from 140 patient organizations urging Congress to keep the Orphan Drug Tax Credit in place

September 11: NORD comments to the Centers for Medicare & Medicaid Services (CMS) regarding the “14-Day Rule”

September 11: NORD comments to the Centers for Medicare & Medicaid Services (CMS) regarding biosimilars

September 8: Coalition letter urging Secretary Price to retain the six protected classes under Medicare Part D

August 30: NORD letter voicing concerns over California Assembly Bill 265

August 21: NORD comments on the Massachusetts Executive Office of Health and Human Services’ (EOHHS) proposed Amendment to the MassHealth Section 1115 Demonstration

August 16: NORD letter to Congress outlining short-term and long-term stabilization and improvement proposals for the Affordable Care Act (ACA)

July 18: Coalition letter urging the House to restore Medicare State Health Insurance Assistance Program (SHIP) funding to FY16 levels

July 12: Coalition comments in response to Health and Human Services (HHS)’s Request for Information (RFI) on ways to reduce regulatory burdens and improve health care choices to empower patients

July 11: Coalition letter urging Congress to negotiate a bipartisan budget deal that raises the sequestration caps

July 6: Coalition letter opposing proposed budget cuts to newborn screening programs

June 15: Coalition letter urging Senate leadership to protect Medicaid

June 12: Coalition letter urging Congress to reauthorize the Children’s Health Insurance Program (CHIP)

June 12: Coalition comments to FDA on the creation of an Office of Patient Affairs

June 9: NORD letter in support of the Medical Nutrition Equity Act of 2017

June 1: Coalition letter in support of New York S.4788/A.7509, acts regarding the substitution of interchangeable biological products

May 23: Zika Coalition letter to the House Committee on Energy and Commerce

May 17: Oregon coalition letter regarding out-of-pocket costs

May 9: NORD letter in support of the Enhancing Clinical Trial Design Act

May 8Sign-on letter from 120 patient organizations urging Congress to reauthorize FDA User Fee Agreements

May 2: Coalition principles for access to unapproved therapies

April 28: NORD comments on FDA Reauthorization Act of 2017 discussion draft

April 28: NORD letter in support of the Rare Disease Expert Provision in Iowa House File 653

April 24: MAPRx Coalition letter to the Centers for Medicare & Medicaid Services (CMS)

April 19: Coalition comments on manufacturer communications regarding unapproved uses of approved or cleared medical products

April 4: Coalition letter urging Congress to provide funding for newborn screening in FY 2018 appropriations

April 3: NORD comments on proposed changes to ICER’s value framework

April 3: NORD comments on ICER’s Patient Participation Guide

March 28: NORD letter in support of California Senate Bill 643, a bill to add Duchenne muscular dystrophy to the list of medical conditions eligible for the Genetically Handicapped Persons Program

March 28: NORD letter in support of Iowa House File 233, an act regarding step therapy protocols

March 27: Coalition letter urging Congress to include funding to combat Zika in Fiscal Year 2018 appropriations

March 21: NORD letter in support of Florida House Bill 963, an act regarding newborn screening

March 20: Coalition letter to Congress expressing concern over proposed changes to Medicaid

March 20: NORD letter in support of Nevada Assembly Bill 245, an act calling for prescriber communication with regard to biosimilars

March 16: NORD letter in support of Oregon Senate Bill 237, an act regarding cost sharing

March 16: NORD letter in support of Kansas House Bill 2107, an act calling for prescriber communication with regard to biosimilars

March 7: American Plasma Users Coalition (APLUS) letter to Congress regarding patient protections

March 7: Coalition for Accessible Treatments (CAT) letter to Congress regarding ACA Cost Sharing

March 6: Coalition healthcare reform principles

March 1: Coalition letter in support of CT HB 7118, an act calling for prescriber communication with regard to biosimilars

February 27: Coalition letter to President Trump regarding rare diseases and the hiring freeze

February 23: NORD Principles for Health Coverage Reform

February 22: NORD State Ambassador testimony before the Connecticut General Assembly’s Public Health Committee supporting HB 6009, an act to establish a Rare Disease Advisory Council

February 15: NORD letter in support of Alabama House Bill 82, an act calling for prescriber communication with regard to biosimilars

February 10: Coalition letter urging Congress to preserve funding for programs that provide critical support to state newborn screening programs

February 10: Coalition letter urging Congress to provide ample funding to combat the Zika virus

February 10: Coalition letter to New Jersey Legislature regarding patient out-of-pocket costs for prescription medications

February 10: NORD letter in support of New Mexico Senate Bill 180 and House Bill 260, acts calling for prescriber communication with regard to biosimilars

February 9: NORD letter on preexisting conditions insurance protections

February 7: Coalition letter to President Trump regarding vaccine safety

February 3: NORD letter in support of South Carolina Senate Bill 299 and South Carolina House Bill 3438

February 3: NORD letter in support of Nebraska Legislative Bill 481

February 3: NORD letter in support of Alaska Senate Bill 32

January 24: NORD letter in support of Kansas House Bill 2107

January 18: NORD letter in support of Montana House Bill 233

January 6: NORD comments to FDA on the Center for Devices and Radiological Health’s (CDRH) establishment of the Patient and Care-Partner Connection (P&CC)

July 22: Coalition letter to NDAA Conference Committee members in support of TRICARE coverage of medically necessary foods

July 13: Coalition letter uring Congress to send bipartisan Zika emergency spending bill to the President

July 12 & 13: PBSA statement before FDA Arthritis Advisory Committee meetings

June 28: Coalition letter to Congress urging for the conference committee to reconvene and produce a new Zika funding bill

June 27: REAP Coalition comments on CMS’s MACRA physician quality payment program proposed rule

June 24: PBSA thank you letter to Dr. Janet Woodcock and the FDA

June 7: Coalition letter endorsing H.R. 1859/S. 2782

May 31: PBSA Coalition comments to FDA on Biosimilar Labeling Guidance

May 24: Coalition letter to Senator Kirk on the REGROW Act

May 18: Coalition letter to the House supporting Zika Supplemental Funding

May 13: Coalition letter to the Senate supporting Zika Supplemental Funding

May 13: Coalition letter in support of Advancing Research for Neurological Diseases Act

May 9: CAT Coalition comments to CMS on CMMI Medicare Program: Part B Drug Payment Model

May 9: NORD comments to CMS on CMMI Medicare Program: Part B Drug Payment Model

May 1: Coalition letter to FDA on Biosimilar distinguishable naming

April 28: NORD releases a position statement on patient assistance programs (PAPs) related to the issue of increases in prescription drug spending and overall health care costs.

April 28: Letter to The Honorable Jay Nixon, Governor of Missouri, to support SB 875, a bill that will protect patients by including language calling for prescriber communication.

April 27: Coalition letter to the Senate HELP Committee in support of the Innovations initiative

April 19: PBSA Coalition letter to Commissioner Califf on FDA’s implementation of the Biologics Price Competition and Innovation Act (BPCIA)

April 5: Coalition letters to Congress in support of Zika funding

March 25: MAPRx Coalition letter to MedPAC in opposition of proposals related to Medicare Part D

March 17: Letter to House Appropriators in support of funding for the Pediatric Device Consortia Grant Program

March 14: Letter to House Armed Services Committee on TRICARE coverage of medical foods

March 14: NORD comments to FDA on Clinical Outcome Assessment (COA) Compendium

February 29: NORD letter to Congress on supporting Rare Disease Day 2016

February 19: Coalition letter to the Senate in support of Dr. Califf’s Nomination for FDA Commissioner

February 9: NORD statement at the FDA Arthritis Advisory Committee hearing on Celltrion’s biosimilar for Remicade

January 15: Coalition comments from I Am Essential to Secretary Burwell on the Draft 2017 Letter to Issuers in the Federally-facilitated Marketplaces

January 6: NORD comments to OHRP on Federal Policy for the Protection of Human Subjects

January 6: Coalition comments to OHRP on the implications of the proposed changes of the Common Rule for universal newborn screening programs

December 21: A-PLUS Coalition comments to CMS on its benefit and payment parameters 2017 proposed rule

December 21: NORD comments to CMS on its benefit and payment parameters 2017 proposed rule

December 21: Coalition comments from I Am Essential to CMS on its benefit and payment parameters 2017 proposed rule

December 21: CAT Coalition comments to CMS on its benefit and payment parameters 2017 proposed rule

December 9: NORD letter to Chairman Hatch of the Senate Committee on Finance on CMS biosimilar reimbursement

November 13: NORD letter to Congressional Appropriators in support of FDA appropriations for 2016

November 12: Coalition letter to the Senate HELP Committee in support of the Advancing Targeted Therapies for Rare Diseases Act (S.2030)

November 9: Coalition letter from I Am Essential to Secretary Burwell on discrimination in health insurance plan structure

November 9: REAP Coalition letter to Secretary Burwell on non-discrimination in health plans and activities

October 29: Coalition letter to the Senate HELP Committee in support of Dr. Califf’s Nomination for FDA Commissioner

October 27: NORD comments to the FDA on Biosimilar naming

October 23: Patients for Biologics Safety & Access coalition comments to the FDA on Biosimilar naming

October 16: Comments to the FDA on their draft guidance titled “Rare Diseases – Common Issues in Drug Development”

October 12: Letter to Chairman Paul Ryan of the House Ways and Means Committee in support of the Preserving Access to Orphan Drugs Act

September 21: Letter to the Senate Health, Education, Labor, and Pensions (HELP) Committee in support of Humanitarian Device Exemption (HDE) reforms in the 21st Century Cures Act.

September 21: APLUS Coalition letter to Secretary Burwell and letter to House Committee Chairmen expressing support for recent changes to out-of-pocket maximum rules

September 17: Coalition letter to the Senate HELP Committee in support of the OPEN Act

September 8: Comments to CMS regarding reimbursement codes for Biosimilars

September 2: Letter to the Precision Medicine Working Group recommending the inclusion of children in the Precision Medicine Initiative (PMI) cohort

August 14: Comments to the NIH regarding the NIH Strategic Plan Framework

August 10: Comments to the FDA regarding the Duchenne Muscular Dystrophy and Related Dystrophinopathies Developing Drugs for Treatment Draft Guidance

July 31: Letter to the Centers for Medicare and Medicaid Services (CMS) on Orphan Exclusion from the Medicaid Line Extension Rebate

July 31: Citizen Petition to the FDA on the use of modern testing methods for pre-clinical research

July 28: Amicus Curiae Brief filed in support of Spectrum Pharmaceuticals in Spectrum v. Burwell

July 27: Comments on the Medicaid Managed Care Proposed Rule as part of the Regulatory Education and Action for Patients (REAP) Coalition

July 15: Testimony and Presentation at the FDA Prescription Drug User Fee Program Reauthorization Stakeholder Meeting

July 13: Testimony and Presentation at the FDA Medical Device User Fee Program Reauthorization Stakeholder Meeting

June 24: Letter to U.S. Senate Committee on Finance regarding incentives for rare disease therapies as related to trade negotiations in Trans-Pacific Partnership (TPP) and President Trade Promotion Authority (TPA)

June 24: Letter to House Energy & Commerce Committee from NORD and Member Organizations supporting 21st Century Cures Act

June 23: Letter to U.S. House of Representatives supporting Children’s Access to Specialty Care Act of 2015 (H.R. 1859)

June 22: Letter to Senate Finance Committee as part of Medicare Access for Patients (MAP) Rx Coalition

June 17: White Paper (co-authored by NORD and BIO) , “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases,” and accompanying patient stories

May 21: Videos from Caucus Briefing on the 21st Century Cures Initiative and the Priorities of the Rare Disease Community

May 29: Final Comments to House Energy & Commerce Committee on 21st Century Cures Act

April 13:  Comments to FDA regarding Draft Guidance to help simplify “Individual Patient Expanded Access Applications: Form FDA 3926: Draft Guidance for Industry” for patients and physicians

April 13: Letters to House and Senate to reauthorize the Rare  Pediatric Disease Priority Review Voucher (PRV) Program

April 13: Letter to FDA regarding draft guidance for the Patient Expanded Access Form (Form 3926)

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