Statements, Letters, and Regulatory Comments

By educating elected officials and other government decision-makers on the needs of the cystic fibrosis community, the Cystic Fibrosis Foundation works to shape public policy to help our efforts to cure CF and provide all people with CF the opportunity to live full, healthy lives. Below find a listing of our state and federal statements, letters, and regulatory comments submitted from November 2018-to date.

Cystic Fibrosis Foundation's COVID-19 Advocacy Efforts

Nothing is more important than the health and well-being of the cystic fibrosis community. The Cystic Fibrosis Foundation is actively engaged in efforts to ensure that both state and federal policies related to COVID-19 are in place to help people with CF and their loved ones through this difficult time. We will continue to monitor state and federal policy proposals and assess how they could affect the CF community.

Federal Activity

  • September 24: Partnership to Protect Coverage (PPC) statement on principles for telehealth policies.
  • September 4: CF Foundation comments to the National Academies of Sciences, Engineering, and Medicine on their draft allocation framework for a COVID-19 vaccination.
  • August 27: PPC outlines principles for telehealth policies.
  • August 26: CF Foundation comments on COVID-19 vaccine allocation to the Centers for Disease Control and Prevention (CDC)'s Advisory Committee on Immunization Practices (ACIP).
  • August 25: Ad-hoc patient advocacy coalition letter to the United States Postal Service expressing concern about the altered operations and package delays within the agency.
  • August 24: CF Foundation letter to Sens. Blunt and Murphy supporting the TREAT Act, which would enable the temporary recognition of medical licenses across state lines.
  • August 6: Ad-Hoc Group for Medical Research letter to Congressional leadership reiterating support for at least $15.5 billion in emergency funding for the National Institutes of Health (NIH).
  • August 5: Stakeholder Forum for Antimicrobial Resistance (S-FAR) letter to Congressional leadership requesting DISARM and post-FDA approval antibiotics be included in the next COVID-19 package.  
  • July 30: Ad-hoc patient advocacy coalition letter to HHS thanking the department for renewing the public health emergency declaration for an additional 90 days.
  • July 30: PPC statement urging Congress to end the practice of surprise medical billing in the fourth COVID-19 legislative package.
  • July 28: PPC letter to Congressional leadership to include provisions in the fourth COVID-19 legislative package to protect Americans' health and financial security during the pandemic.
  • July 10: Ad-hoc patient advocacy coalition letter to HHS urging for the renewal of the public health emergency declaration an additional 90 days.
  • June 29: Telehealth Coalition statement urging Congressional leadership to make telehealth flexibilities created during the COVID-19 pandemic permanent.
  • June 29: Telehealth Coalition letter urging Congress leadership to make telehealth flexibilities created during the COVID-19 pandemic permanent.
  • June 26: CF Foundation comments in response to Senator Alexander's Pandemic Preparedness white paper.
  • June 26: PPC comments in response to Senator Alexander's Pandemic Preparedness white paper.
  • June 26: S-FAR coalition comments in response to Senator Alexander's Pandemic Preparedness white paper.
  • June 18: Food Security Coalition statement urging Senate leadership to increase Supplemental Nutrition Assistance Program benefits during the COVID-19 pandemic.
  • June 1: CF Foundation comments to the Centers for Medicare and Medicaid Services (CMS) on their interim final rule regarding Medicare flexibilities during the COVID-19 pandemic.
  • May 26: PPC letter to Congressional leadership outlining policy priorities related to Medicaid in the fourth COVID-19 relief package.
  • May 21: CF Foundation hosts virtual Congressional Briefing to educate staff on Capitol Hill on the importance of expanded paid Family and Medical Leave for vulnerable populations.
  • May 20: PPC letter to the HHS Office of Civil Rights calling for further guidance on state triage planning during the COVID-19 pandemic.
  • May 8: S-FAR letter to Congressional leadership urging swift action on antibiotic drug development funding as part of the ongoing COVID-19 response. 
  • April 24: PPC statement expressing support for the Worker Health Coverage Protection Act, which would cover the full cost of COBRA premiums for furloughed or terminated employees.
  • April 22: Ad-hoc patient advocacy coalition letter to Congressional leadership supporting a range of polices to help protect patients and provide access to care during the COVID-19 pandemic.
  • April 15: Ad-hoc patient advocacy coalition letter to Congressional leadership asking they provide more research funding for NIH and education funding for CDC for COVID-19 related awareness in the fourth COVID-19 legislative package.
  • April 14: PPC letter urging Congress to include provisions in the fourth COVID-19 legislative package to protect Americans' health and financial security during the pandemic.
  • April 9: CF Foundation statement urging Congress to expand paid leave policies during the COVID-19 public health crisis.
  • April 9: CF Foundation letter to Congressional leaders, signed by more than 160 patient and consumer organizations asking for an expansion of the Families First Coronavirus Response Act's paid leave provisions during the COVID-19 pandemic.
  • April 8: PPC letter to Congressional leadership asking they end the practice of surprise medical billing in the next coronavirus stimulus package.
  • April 8: S-FAR letter to the Biomedical Advanced Research and Development Authority (BARDA) requesting they use a portion of their emergency supplemental funding to invest in more antibiotics for America's national stockpile.
  • April 8: S-FAR letter to the CDC requesting a portion of their emergency funding be used for surveillance of secondary bacterial infections and antibiotic resistance related to COVID-19.
  • April 1: PPC statement urging the Administration to implement a special enrollment period for Healthcare.gov.
  • March 30: PPC letter to HHS encouraging them to open a special enrollment period for the marketplace, provide subsidized COBRA coverage, and ensure coverage of COVID-19 testing and treatment.
  • March 30: Ad-hoc patient advocacy coalition letter to the Administration asking to maintain social distancing practices and base any decision to relax them on medical evidence.
  • March 23: Ad-hoc patient and disability coalition letter to Congressional leadership asking for additional Medicaid funding to ensure states can mitigate the impact of COVID-19.
  • March 20: Ad-hoc patient advocacy coalition letter to Congressional leadership requesting that they ensure all payers adhere to the CDC's recommendation for medication access and refills.

State Activity

  • September 1: CF Foundation letter to Florida Medicaid requesting the program expand several temporary telehealth flexibilities beyond their expiration date.
  • August 31: Ad-hoc patient advocacy coalition letter to the governor of Arizona asking the state to revise their COVID-19 treatment allocation plan to ensure non-discrimination against people with chronic conditions.
  • August 25: Ad-hoc patient advocacy coalition letter to the governor of Texas asking the state to adopt a COVID-19 treatment allocation plan that does not discriminate against people with chronic conditions.
  • August 24: Ad-hoc patient advocacy coalition letter to the governor of Florida asking the state to adopt a COVID-19 treatment allocation plan that does not discriminate against people with chronic conditions.
  • August 17: CF Foundation letter thanking Texas Commission of Education for ensuring all school districts offer remote learning as an option for the 2020-2021 school year.
  • August 14: CF Foundation letter to New York Department of Health requesting an extension of several temporary telehealth flexibilities beyond their expiration date.
  • August 14: CF Foundation letter to Arkansas Medicaid requesting the program extend several temporary telehealth flexibilities beyond their expiration date.
  • August 14: CF Foundation letter to Mississippi Medicaid requesting the program extend several temporary telehealth flexibilities beyond their expiration date.
  • August 13: CF Foundation letter to Florida Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 10: CF Foundation letter to Michigan Medicaid requesting the program extend several temporary telehealth flexibilities beyond their expiration date.
  • August 8: CF Foundation letter to Maryland State Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to Massachusetts Department of Elementary and Secondary Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to Minnesota Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to Mississippi Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to Missouri Department of Elementary and Secondary Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to Montana Office of Public Instruction urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to Nebraska Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to State of Nevada Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to New Hampshire Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to New Jersey Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to New Mexico Public Education Department urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to Oklahoma State Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to Oregon Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to Rhode Island Office of Elementary and Secondary Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to South Carolina Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to South Dakota Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to Tennessee Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to Utah Office of Public Instruction urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to Vermont Agency of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to Virginia Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to Washington Office of Public Instruction urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to West Virginia Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 8: CF Foundation letter to Wyoming Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 7: CF Foundation letter to Idaho State Board of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 7: CF Foundation letter to Indiana Office of Public Instruction urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 7: CF Foundation letter to Iowa Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 7: CF Foundation letter to Kansas State Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 7: CF Foundation letter to Kentucky Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 7: CF Foundation letter to Louisiana Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 7: CF Foundation letter to Maine Department of Education urging the state to offer remote learning as an option for the 2020-2021 school year.
  • August 6: CF Foundation letter to Michigan Department of Education urging the state to encourage all school districts to offer remote learning as an option for the 2020-2021 school year.
  • August 5: CF Foundation letter to Alaska Department of Education and Early Development urging the state to encourage all school districts to offer remote learning as an option for the 2020-2021 school year.
  • August 5: CF Foundation letter to Arizona Department of Education urging the state to encourage all school districts to offer remote learning as an option for the 2020-2021 school year.
  • August 5: CF Foundation letter to Arkansas Department of Education urging the state to encourage all school districts to offer remote learning as an option for the 2020-2021 school year.
  • August 5: CF Foundation letter to Alabama Department of Education urging the state to encourage all school districts to offer remote learning as an option for the 2020-2021 school year.
  • August 5: CF Foundation letter to California School Board Association urging the state to encourage all school districts to offer remote learning as an option for the 2020-2021 school year.
  • August 5: CF Foundation letter to Colorado Department of Education urging the state to encourage all school districts to offer remote learning as an option for the 2020-2021 school year.
  • August 5: CF Foundation letter to Connecticut State Department of Education urging the state to encourage all school districts to offer remote learning as an option for the 2020-2021 school year.
  • August 5: CF Foundation letter to Delaware Department of Education urging the state to encourage all school districts to offer remote learning as an option for the 2020-2021 school year.
  • August 5: CF Foundation letter to District of Columbia Office of the State Superintendent of Education urging the district to encourage all school districts to offer remote learning as an option for the 2020-2021 school year.
  • August 5: CF Foundation letter to Georgia Department of Education urging the state to encourage all school districts to offer remote learning as an option for the 2020-2021 school year.
  • August 5: CF Foundation letter to Hawaii Department of Education urging the state to encourage all school districts to offer remote learning as an option for the 2020-2021 school year.
  • August 4: CF Foundation letter to Maine Medicaid requesting the program extend several temporary telehealth flexibilities beyond their expiration date.
  • August 4: CF Foundation letter to Wisconsin Department of Public Instruction urging the state to encourage all school districts to offer remote learning as an option for the 2020-2021 school year.
  • August 4: CF Foundation letter to Buckeye Association of School Administrators urging the state to encourage all school districts to offer remote learning as an option for the 2020-2021 school year.
  • August 4: CF Foundation letter to Ohio School Boards Association urging the state to encourage all school districts to offer remote learning as an option for the 2020-2021 academic year.
  • July 31: CF Foundation letter to Indiana Medicaid requesting the program extend several temporary telehealth flexibilities beyond their expiration date.
  • June 26: CF Foundation letter to Georgia Medicaid requesting the program extend several temporary telehealth flexibilities beyond their expiration date.
  • June 26: CF Foundation letter to Colorado Medicaid requesting the program extend several temporary telehealth flexibilities beyond their expiration date.
  • June 25: CF Foundation letter to Alabama Medicaid Agency requesting the program extend several temporary telehealth flexibilities beyond their expiration date.
  • June 2: CF Foundation letter to Virginia's Medicaid asking for telehealth flexibility expansion to beneficiaries of the Department of Medical Assistance Services.
  • May 29: CF Foundation letter to Michigan governor asking for continued support of adequate funding for Medicaid and the Children's Special Health Care Services Program.
  • May 26: CF Foundation letter urging New York state legislators to protect robust Medicaid funding in any future budget adjustments due to COVID-19.
  • May 22: CF Foundation comments thanking Wisconsin for releasing proposed COVID-19 ventilator allocation guidelines that do not discriminate against people with chronic conditions.
  • May 15: CF Foundation letter to New York's Medicaid director urging the state to protect robust funding for Medicaid in any future budget adjustments in response to COVID-19.
  • May 12: CF Foundation letter to Florida's lieutenant governor thanking the state for removing its COVID-19 treatment allocation plan and asking that any future plan not discriminate against people with chronic conditions.
  • May 11: CF Foundation letter to Maryland's Office of Preparedness and Response thanking the state for removing its COVID-19 treatment allocation plan and asking that any future plan does not discriminate against people with chronic conditions.
  • May 8: Ad-hoc patient advocacy coalition letter to the governor of Connecticut asking the state to adopt a COVID-19 treatment allocation plan that does not discriminate against people with chronic conditions.
  • May 8: Ad-hoc patient advocacy coalition letter to the governor of Louisiana asking the state to adopt a COVID-19 treatment allocation plan that does not discriminate against people with chronic conditions.
  • May 8: CF Foundation letter to Louisiana's Bureau of Community Preparedness thanking the state for removing its COVID-19 treatment allocation plan and asking that any future plan does not discriminate against people with chronic conditions.
  • May 8: CF Foundation letter to Kansas's Department of Health and Environment thanking the state for removing its COVID-19 treatment allocation plan and asking that any future plan does not discriminate against people with chronic conditions.
  • May 8: CF Foundation letter to New Hampshire's Department of Health and Human Services asking the state to adopt a COVID-19 treatment allocation plan that does not discriminate against people with chronic conditions.
  • May 7: Ad-hoc patient advocacy coalition letter to New Hampshire Department of Health and Human Services asking the state to adopt a COVID-19 treatment allocation plan that does not discriminate against people with chronic conditions. 
  • May 5: CF Foundation letter to Washington's Northwest Healthcare Response Network asking the state to adopt a COVID-19 treatment allocation plan that does not discriminate against people with chronic conditions.
  • May 5: CF Foundation letter to Tennessee's Department of Health thanking the state for removing its COVID-19 treatment allocation plan and asking that any future plan not discriminate against people with chronic conditions.
  • May 1: Ad-hoc patient advocacy coalition letter to governor of New Jersey asking the state to adopt a COVID-19 treatment allocation plan that does not discriminate against people with chronic conditions.
  • April 29: Ad-hoc patient advocacy coalition letter to governor of Texas asking the state to adopt a COVID-19 treatment allocation plan that does not discriminate against people with chronic conditions.
  • April 28: CF Foundation letter to Oklahoma's Department of Health asking the state to adopt a COVID-19 treatment allocation plan that does not discriminate against people with chronic conditions.
  • April 27: Ad-hoc patient advocacy coalition letter to governor of Virginia asking the state to adopt a COVID-19 treatment allocation plan that does not discriminate against people with chronic illnesses.
  • April 24: CF Foundation letter to Utah's Department of Health commenting on the state's proposed guidance on triage planning during the COVID-19 public health crisis.
  • April 22: CF Foundation letter to Vermont's Department of Health commenting on the state's proposed guidance on triage planning during the COVID-19 public health crisis.
  • April 16: Ad-hoc patient advocacy coalition letter to governor of Kansas thanking her for retracting the Toolkit for COVID-19 and urging the state to ensure future treatment allocation plans do not discriminate against people with chronic conditions.
  • April 16: CF Foundation letter to Texas urging the state to ensure safe, timely access to care during the COVID-19 pandemic by expanding coverage for telemedicine, home care, and emergency supplies of medication, while temporarily allowing flexibility in utilization management requirements.
  • April 16: CF Foundation letter to North Carolina urging the state to ensure safe, timely access to care during the COVID-19 pandemic by expanding coverage for telemedicine, home care, and emergency supplies of medication, while temporarily allowing flexibility in utilization management requirements.
  • April 16: CF Foundation letter to Illinois urging the state urging the state to ensure safe, timely access to care during the COVID-19 pandemic by expanding coverage for telemedicine, home care, and emergency supplies of medication, while temporarily allowing flexibility in utilization management requirements.
  • April 15: CF Foundation letter to Pennsylvania urging the state urging the state to ensure safe, timely access to care during the COVID-19 pandemic by expanding coverage for telemedicine, home care, and emergency supplies of medication, while temporarily allowing flexibility in utilization management requirements.
  • April 15: CF Foundation letter to Michigan urging the state urging the state to ensure safe, timely access to care during the COVID-19 pandemic by expanding coverage for telemedicine, home care, and emergency supplies of medication, while temporarily allowing flexibility in utilization management requirements.
  • April 15: CF Foundation letter to Wisconsin's State Disaster Medical Advisory Group commenting on the state's proposed guidance on triage planning during the COVID-19 public health crisis.
  • April 13: CF Foundation statement on COVID-19 triage plans.
  • March 19: Ad-hoc patient advocacy coalition letter to governors calling for action on several policies crucial to mitigating the spread of COVID-19, including expanding access to telehealth services, and reducing barriers for testing and treatment.

CF Foundation's Ongoing Advocacy Efforts

2020 Federal Activity

  • October 5: CF Foundation comments to CMS on their proposed Medicare Physician Fee Schedule for calendar year 2021.
  • September 24: CF Foundation letter to the U.S. Environmental Protection Agency asking for studies to assess the risk towards immunocompromised individuals related to P. fluorescens used in herbicide, and to ensure product labelling for herbicides convey potential risk. 
  • September 23: S-FAR letter to the U.S. Senate seeking fiscal year 2021 appropriations funding to combat antimicrobial resistance.
  • September 23: S-FAR letter to the U.S. House of Representatives seeking fiscal year 2021 appropriations funding to combat antimicrobial resistance.
  • August 31: Ad-hoc patient advocacy coalition statement urging full appeals court review on short-term, limited-duration insurance.
  • August 14: PPC letter to the U.S. Departments of Health and Human Services (HHS), Department of the Treasury, and Department of Labor (DOL) opposing proposed changes to grandfathered group coverage.
  • August 10: PPC letter to the Internal Revenue Service (IRS) expressing opposition to proposed rule on certain medical care arrangements.
  • July 31: CF Foundation response to FDA request for input on Rare Disease Clinical Trial Network.
  • July 17: CF Foundation provides comments on Cures 2.0 white paper and request for information.
  • June 29: PPC letter applauding the protections outlined in the new Patient Protection and Affordable Care Enhancement Act.
  • June 19: Consortium for Citizens with Disabilities letter to Congressional leadership regarding Social Security Disability Insurance waiting periods.
  • May 13: PPC statement urging the Supreme Court to Uphold the Affordable Care Act (ACA).
  • May 8: CF Foundation comment letter on the PASTEUR Act, which would institute an antibiotic subscription model to address antibiotic resistance.
  • March 23: CF Foundation comments on a CMS request for information on coordinating care for out-of-state providers for children with complex medical needs on the Medicaid program.
  • March 12: S-FAR letter to key U.S. House of Representatives Appropriations Subcommittees calling for increased funding for infection and antibiotic research and drug development.
  • March 12: S-FAR letter to key Senate Appropriations Subommittees calling for calling for increased funding for infection and antibiotic research and drug development programs in fiscal year 2021.
  • March 9: CF Foundation comments to the U.S. Food and Drug Administration (FDA) on draft model guidance for demonstrating substantial evidence of effectiveness for human drug and biological products.
  • March 9: PPC comments to CMS opposing guidance encouraging states to adopt Medicaid block grants and per capita caps.
  • March 2: CF Foundation comments to CMS regarding fiscal year 2021 changes to Notice of Benefit and Payment Parameters.
  • March 2: PPC comments to CMS regarding fiscal year 2021 changes to Notice of Benefit and Payment Parameters.
  • February 12: Ad-hoc Group for Medical Research letter to Congress calling for a $3 billion increase in NIH funding for fiscal year 2021.
  • February 12: PPC statement in response to the U.S. House Ways & Means Committee markup of legislation intended to prevent patients from facing surprise medical bills.
  • February 11: CF Foundation comments to CMS in response to proposed changes to outcome measures and requirements for organ procurement organizations (OPO).
  • February 11: CF Foundation comments to the Health Resources and Services Administration (HRSA) in response to proposed changes to remove financial disincentives for living organ donors.
  • February 11: PPC statement in response to the U.S. House Committee on Education and Labor's markup of legislation intended to prevent patients from facing surprise medical bills.
  • January 31: PPC comment letter to the CMS on the Medicaid Fiscal Accountability proposed rule.
  • January 30: CF Foundation comment letter to the Social Security Administration on their draft rule regarding the frequency and notice of continuing disability rules.
  • January 28: S-FAR letter to HHS urging the agency to take swift action to stabilize and strengthen the antibiotics market.
  • January 21: PPC statement expressing disappointment of the Supreme Court's decision not to expedite Texas v. United States.
  • January 17: Ad-hoc patient advocacy coalition letter to HHS requesting a meeting to discuss concerns related to proposed changes to the Medicaid program.
  • January 3: Ad-hoc patient advocacy coalition statement endorsing the expedited review of Texas v. United States.

2020 State Activity

  • September 23: CF Foundation letter to HHS asking the federal government to reject Georgia's proposal to eliminate Healthcare.gov in the state.
  • September 18: Ad-hoc patient advocacy coalition letter to HHS asking the federal government to reject Georgia's proposal to eliminate Healthcare.gov in the state.  
  • September 11: CF Foundation letter to HHS asking the federal government reject Florida's proposal to extend the elimination of Medicaid retroactive eligibility.
  • September 11: Ad-hoc patient advocacy coalition letter to HHS asking the federal government reject Florida's proposal to extend the elimination of Medicaid retroactive eligibility.
  • August 12: CF Foundation comments to New Mexico's superintendent of insurance supporting a proposed rule that would place restrictions on short-term, limited-duration insurance plans.
  • August 12: CF Foundation comments to New Mexico's superintendent of insurance supporting proposed guidelines to regulate less comprehensive excepted benefits plans.
  • August 7: CF Foundation letter to Wisconsin's Department of Health urging their support for adequate funding for the state's Medicaid and chronic disease program in the upcoming budget.
  • July 22: CF Foundation comments to Georgia's Department of Community Health asking the state to withdraw its application to stop selling marketplace plans on healthcare.gov.
  • July 17: Ad-hoc patient advocacy coalition letter to Georgia's governor requesting an extension of the comment period for the state's new marketplace waiver application.
  • June 30: CF Foundation letter to Florida Medicaid asking the state to rescind its application to extend the elimination of Medicaid retroactive eligibility for two years. 
  • June 27: CF Foundation letter to HHS asking the federal government to reject Oklahoma's proposal to implement barriers to coverage in its Medicaid program, including work requirements and block grants. 
  • June 25: Ad-hoc patient advocacy coalition statement urging CMS to reject Oklahoma's proposal to implement barriers to coverage in its Medicaid program, including work requirements and block grants.  
  • June 24: Ad-hoc patient advocacy coalition letter to HHS asking the federal government to reject Oklahoma's proposal to implement barriers to access to coverage in its Medicaid program, including work requirements and block grants. 
  • June 17: CF Foundation letter to Maryland Department of Health urging the state to integrate CFTR/DNA testing into its newborn screening processes. 
  • June 12: Ad-hoc patient advocacy coalition letter supporting New Hampshire's proposal to create a reinsurance program.
  • June 1: CF Foundation letter to Ohio's House Health Committee supporting legislation that would ban accumulator adjustment programs.
  • May 20: Ad-hoc patient advocacy coalition statement supporting Oklahoma's ballot initiative to expand Medicaid eligibility.
  • May 20: Ad-hoc patient advocacy coalition statement thanking Virginia's governor for vetoing harmful association health plan bills. 
  • April 15: CF Foundation comments to Oklahoma's Medicaid director opposing the state's proposal to implement a Medicaid block grant and add barriers to care.
  • April 6: CF Foundation letter to the Ohio Department of Health thanking the department for keeping Ohioans healthy and safe during the COVID-19 pandemic and asking for their continued support of the Children with Medical Handicaps (CMH) program.
  • March 27: Ad-hoc patient advocacy coalition letter urging the Virginia governor to veto several harmful association health plans bills.
  • March 27: Coalition letter to the Virginia governor supporting bills that would place limits on short-term, limited-duration plans.
  • March 20: Ad-hoc patient advocacy coalition statement opposing Oklahoma's proposal to implement a Medicaid block grant and add barriers to access for those with complex conditions.
  • March 3: CF Foundation comment letter to Kentucky's House of Representatives supporting legislation that would ban accumulator programs.
  • March 2: Ad-hoc patient advocacy coalition letter to Missouri senator opposing legislation to add work and community engagement requirements as a condition of Medicaid eligibility.  
  • February 21: CF Foundation letter to Missouri House and Senate asking members to oppose a proposed ballot initiative to add work and community engagement requirements as a condition of Medicaid eligibility.
  • February 21: CF Foundation comments to New York's Medicaid Redesign Team asking for the preservation of funding for the Adult Cystic Fibrosis Assistance Program.
  • February 12: CF Foundation letter to New York's Senate Finance Committee and Assembly Ways and Means Committee urging them to preserve funding for the Adult Cystic Fibrosis Assistance Program.
  • February 7: CF Foundation comment letter to HHS opposing Georgia's proposal to partially expand Medicaid and add work requirements and premiums as conditions for enrollment. 
  • January 17: CF Foundation letter to Mississippi's Medicaid director asking the state to revise its monthly prescription drug limit policy.
  • January 17: CF Foundation comments to HHS asking the agency to deny Nebraska's request to eliminate Medicaid retroactive eligibility and establish tiered approach for expansion.

2019 Federal Activity

  • December 19: Newborn Screening Coalition letter to HHS urging the department to ensure that the Advisory Committee on Heritable Disorders in Newborns and Children resumes its scheduled meetings while Congress continues its efforts to reauthorize the Newborn Screening Saves Lives Act.
  • December 19: Ad-hoc patient advocacy coalition statement expressing disappointment in Fifth Circuit Court ruling in Texas v. United States.
  • December 16: CF Foundation response letter to U.S. Reps. DeGette and Upton providing input on proposed Cures 2.0 legislative effort.
  • December 13: Ad-hoc patient advocacy coalition letter urging the White House to continue pursuing legislation to protect patients and families from surprise medical billing.
  • December 13: Ad-hoc patient advocacy coalition letter urging Congress to pass legislation to protect patients and families from surprise medical billing.
  • December 4: Ad-hoc patient and consumer advocacy coalition letter to the U.S. Senate asking for co-sponsorship of bipartisan legislation that would make permanent the 7.5 percent threshold for medical expense tax deduction.
  • December 4: Ad-hoc patient and consumer advocacy coalition letter to the U.S. House of Representative asking for co-sponsorship of bipartisan legislation that would make permanent the 7.5 percent threshold for medical expense tax deduction.
  • November 21: Ad-hoc patient advocacy coalition letter to HHS encouraging the withdrawal of the “Insurance Standards Bulletin, Opportunity for States to Participate in a Wellness Program Demonstration Project to Implement Health-Contingent Wellness Programs in the Individual Market.”
  • November 15: CF Foundation letter providing recommendations to the European Medicines Agency working group on pediatric clinical trial preparedness.
  • November 12: Ad-hoc patient advocacy coalition letter to Congressional leadership asking Congress to pass comprehensive legislation to ban surprise medical billing by the end of 2019.
  • November 11: S-FAR letter to U.S. House of Representatives and U.S. Senate Appropriations Committees requesting continued support for programs that address antimicrobial resistance.
  • November 11: S-FAR letter to HHS encouraging the department to request new funding from Congress to combat antimicrobial resistance.
  • October 30: Ad-hoc patient advocacy coalition statement supporting a Congressional Review Act resolution that would overturn CMS 1332 guidance permitting states to undermine ACA patient protections.
  • October 24: Ad-hoc Group for Medical Research letter to U.S. House of Representatives and U.S. Senate Appropriations Committees encouraging quick enactment of a Labor-HHS-Education appropriations bill that provides robust funding for medical research.
  • October 21: CF Foundation comments to the Institute for Clinical and Economic Review on their draft scoping document outlining their proposed analysis on highly effective modulator therapies.
  • October 2: Ad-hoc patient advocacy coalition letter to Congressional leadership encouraging swift action on surprise medical billing.
  • October 2: CF Foundation comments on United Network for Organ Sharing/Organ Procurement and Transplantation Network's continuous distribution of lungs concept paper.
  • September 30: CF Foundation comments to the FDA on draft guidance for International Council for Harmonisation General Considerations for Clinical Studies.
  • September 27: CF Foundation comments on CMS proposed rule on Medicare hospital outpatient and ambulatory surgical center payment systems.
  • September 26: CF Foundation comments on CMS proposed rule on revisions to physician fee schedule and other changes to Medicare Part B payment policies.
  • September 13: Ad-hoc patient advocacy coalition letter to CMS commenting on the Medicaid Access rule rescission.
  • September 11: Ad-hoc patient advocacy coalition statement in response to the shift and uncertainty surrounding the medical deferred action program.
  • August 19: Ad-hoc patient advocacy coalition statement on the Department of Homeland Security (DHS) opposing a proposed rule to include use of health care programs in the definition of “public charge” for non-citizens.
  • August 6: CF Foundation comments on FDA draft guidance about enhancing the diversity of clinical trial populations.
  • July 31: Ad-hoc patient advocacy coalition letter of support to Sen. Warner for S.J. Res 52, which would repeal the 1332 State Relief and Empowerment Waivers Guidance released in October 2018.
  • July 24: Ad-hoc patient advocacy coalition letter of support to Reps. Neal, Brady, Pallone, and Walden, for their work to lower out-of-pocket costs under the current Medicare Part D benefit design.
  • July 18: Ad-hoc patient advocacy coalition statement opposing Medicaid block grants.
  • July 18: Ad-hoc patient advocacy coalition letter to CMS opposing Medicaid block grants.
  • July 18: Newborn Screening Coalition statement to Sens. Hassan and Gardner supporting the introduction of Newborn Screening Saves Lives Reauthorization Act of 2019.
  • July 10: Ad-hoc patient advocacy coalition letter to the House Oversight and Reform Committee regarding Texas v. United States.
  • July 8: S-FAR letter to Sens. Casey and Isakson in support of the Developing an Innovative Strategy for Antimicrobial Resistant Microorganisms Act.
  • July 2: Ad-hoc patient advocacy coalition comments to HHS, CMS, and the Department of the Treasury regarding the Request for Information on 1332 State Relief and Empowerment Waiver guidance.
  • June 24: Ad-hoc patient advocacy coalition letter to CMS regarding the proposed rule for fiscal year 2020 Medicare Hospital Inpatient Prospective Payment System.
  • June 24: Newborn Screen coalition letter to Reps. Roybal-Allard, Simpson, Clark, and Herrera Beutler supporting the Newborn Screening Saves Lives Reauthorization Act of 2019.
  • June 21: Ad-hoc patient advocacy coalition letter to Office of Management & Budget (OMB) opposing changes to the official poverty measure.
  • June 18: Ad-hoc patient advocacy coalition letter to Congressional leadership opposing changes to the official poverty measure.
  • June 18: CF Foundation letter to Rep. Castor supporting the designation of a national week of awareness for nontuberculous mycobacteria.
  • June 17: CF Foundation letter to the FDA asking for a quick and efficient review of the triple-combination therapy, and to develop drug labeling to reflect the highly effective nature of the therapy.
  • June 17: CF Foundation letter to Sen. Brown supporting the Family Coverage Act.
  • June 6: CF Foundation letter to Reps. Neal and Brady, and Sens. Pallone and Walden on draft legislation aimed at improving Medicare Part D.
  • June 5: CF Foundation letter to Sens. Alexander and Murray supporting the Alexander-Murray Health Care Costs Discussion draft.
  • May 23: CF Foundation letter to Congressional leaders in support of robust funding for the NIH and FDA funding in fiscal year 2020.
  • May 8: Coalition letter to Rep. Kuster in support of the Protecting Americans with Preexisting Conditions Act.
  • May 8: Coalition letter to Reps. Pallone and Walden outlining the coalition's guiding principles that health care needs to be adequate, affordable, and accessible.
  • May 6: Ad-hoc patient advocacy coalition letter to CMS responding to the Request for Information concerning the sale of individual health insurance coverage across state lines.
  • April 24: CF Foundation letter to Rep. Kuster in support of the Protecting Americans with Preexisting Conditions Act.
  • April 24: CF Foundation letter to Sen. Warner in support of the Protecting Americans with Preexisting Conditions Act.
  • April 24: CF Foundation letter to Rep. Wild in support of the Family Health Care Affordability Act.
  • April 24: CF Foundation letter to Rep. Craig in support of the State Health Care Premium Reduction Act of 2019.
  • April 24: CF Foundation letter to Rep. Underwood in support of the Health Care Affordability Act of 2019.
  • April 8: Ad-hoc patient advocacy coalition statement for the Record to the House Committee on Education and Labor supporting legislation to provide that the rule entitled “Short-Term, Limited Duration Insurance” shall have no force or effect. 
  • April 2: CF Foundation comments to the U.S. Department of Agriculture on the Supplemental Nutrition Assistance Program proposed rule.
  • April 1: Ad-hoc patient advocacy coalition provides amicus brief to the Fifth Circuit Court of the United States in support of the defendants in Texas v. United States.
  • March 27: Ad-hoc patient advocacy coalition comments to HHS, CMS, DOL, and IRS responding to the Request for Information regarding grandfathered group health plans and grandfathered group health insurance coverage.
  • March 26: Ad-hoc patient advocacy coalition statement supporting the Protecting Pre-Existing Conditions and Making Healthcare More Affordable Act of 2019.
  • March 20: Ad-hoc Group for Medical Research letter requesting $41.6 billion in funding for the NIH for fiscal year 2020.
  • March 12: S-FAR letter to Reps. DeLauro, Cole, Bishop, Fortenberry, Lowey, and Rogers urging funding for research into causes antimicrobial resistance in fiscal year 2020.
  • March 6: Ad-hoc patient advocacy coalition letter to HHS opposing work requirements for very low-income parents and caregivers who rely on Medicaid.
  • March 1: Ad-hoc patient advocacy coalition letter to Sen. Alexander responding to Lowering Health Care Costs Request for Information.
  • February 5: CF Foundation comments to FDA on framework for real-world evidence program.
  • February 4: Newborn Screening Coalition letter to Congress outlining the coalition's shared principles for 2019 reauthorization of the Newborn Screening Saves Lives Act.
  • January 8: Ad-hoc patient advocacy coalition letter to HHS expressing concern about the Patient Protection and Affordable Care Act; Exchange Program Integrity rule.
  • January 7: CF Foundation comments on HHS Request for Information on the draft National Action Plan for Combating Antibiotic-Resistant Bacteria.

2019 State Activity

  • December 23: CF Foundation comments to HHS opposing Tennessee's proposal to implement a Medicaid block grant and closed formulary.
  • December 6: CF Foundation comments to Indiana supporting Medicaid expansion but expressing concern about work and community engagement requirements.
  • December 6: CF Foundation comments to HHS opposing Utah's proposal to add premiums and eligibility restrictions to Medicaid.
  • November 22: CF Foundation comments to HHS on Indiana's proposal to provide a bridge to commercial coverage for those who lose Medicaid eligibility based on income.
  • November 21: CF Foundation letter to Texas Health and Human Services Commission requesting appropriation to help relieve the Children with Special Health Care Needs program waitlist.
  • November 6: CF Foundation comments supporting Michigan's Department of Health and Human Services' update on Healthy Michigan Plans.
  • October 31: Ad-hoc patient advocacy coalition comments to Louisiana's insurance commissioner supporting reinsurance and ACA patient protections.
  • October 25: CF Foundation comments to Utah opposing the state's proposal to add premiums and eligibility restrictions to Medicaid.
  • October 18: CF Foundation comments to Tennessee opposing the state's proposal to implement a Medicaid block grant and closed formulary.
  • October 11: CF Foundation letter to Wisconsin's Medicaid director expressing concerns with the state's work and community engagement and premium requirements and asking the state to specifically and automatically exempt people with cystic fibrosis. 
  • October 10: CF Foundation comments to HHS supporting Montana's request to extend Medicaid expansion but expressing concerns regarding the proposal to add work and community engagement requirements.
  • September 30: CF Foundation letter supporting a Pennsylvania bill to ban accumulator programs in the state.
  • September 19: CF Foundation comments opposing Idaho's proposal to implement work and community engagement requirements to its Medicaid program.
  • August 23: CF Foundation letter thanking Ohio legislators for funding of Ohio's BCMH (Children with Medical Handicaps) program.
  • August 22: CF Foundation letter to Montana HHS Director supporting the state's request to extend Medicaid expansion but expressing concerns regarding the proposal to add work and community engagement requirements and increase premiums.
  • August 19: CF Foundation letter to Michigan Medicaid Director regarding cystic fibrosis transmembrane conductance regulator (CFTR) modulator coverage in Medicaid health plans.
  • August 7: CF Foundation letter to HHS in support of New Mexico's proposal to remove barriers to care to the state's managed care program.
  • August 2: Coalition letter to HHS in support of Iowa's proposal to extend Medicaid expansion and remove barriers to patient care.
  • July 30: CF Foundation comments to HHS supporting the Montana's application to operate a reinsurance program.
  • July 25: Coalition letter to the Tennessee Medicaid director and insurance commissioner opposing Medicaid block grants.
  • July 10: Coalition comments to HHS opposing South Carolina's proposal to implement work and community engagement requirements in its Medicaid program.
  • July 3: CF Foundation comments to HHS and Department of the Treasury supporting North Dakota's application to operate a reinsurance program.
  • July 3: CF Foundation letter to HHS and Department of Treasury secretary in support of Colorado's application to operate a reinsurance program.
  • June 30: CF Foundation letter to Idaho insurance commissioner commenting on Idaho's “Coverage Choice Waiver” application.
  • June 28: CF Foundation comments to Utah Department of Health opposing Utah's application to institute Medicaid per capita caps.
  • June 28: CF comments to Delaware insurance commissioner supporting Delaware's application to operate a reinsurance program.
  • June 26: Coalition letter to all state insurance commissions on copay accumulator programs.
  • June 21: CF Foundation letter to the New York Senate Help Committee supporting greater transparency in the pricing of prescription drugs.
  • June 17: CF Foundation comments to Montana supporting the state's application to operate a reinsurance program.
  • June 11: CF Foundation letter to Oregon Gov. Brown supporting greater transparency in prescription drug spending.
  • June 7: CF Foundation letter to Maine House of Representatives supporting greater transparency in the pricing of prescription drugs.
  • June 4: CF Foundation letter to Oregon Senate Committee on Health supporting greater transparency in the pricing of prescription drugs.
  • June 4: CF Foundation letter to the New Hampshire House of Representatives supporting the ban of Medicaid work and community engagement requirements.
  • May 28: Ad-hoc patient advocacy coalition letter to the Louisiana House of Representatives opposing inadequate protections for people with pre-existing conditions.
  • May 28: CF Foundation letter asking Pennsylvania legislators to fully fund the Adult Cystic Fibrosis & Other Chronic Respiratory Illnesses program.
  • May 7: CF Foundation letter to New Hampshire Senate Commerce Committee opposing the ban of manufacturer coupons.
  • May 6: Ad-hoc patient advocacy coalition letter to the Alabama Senate opposing Medicaid work and community engagement requirements.
  • May 6: CF Foundation comments to North Dakota insurance commissioner supporting the state's application to operate a reinsurance program.
  • May 3: CF Foundation letter to Gov. DeSantis opposing short-term, limited-duration health plans.
  • May 3: CF Foundation letter to Florida Gov. DeSantis in opposition to proposed changes to Medicaid retroactive eligibility.
  • April 30: CF Foundation letter to Oklahoma Gov. Stitt supporting legislation that would allow students living with CF to self-administer pancreatic enzymes at school.
  • April 2: Ad-hoc patient advocacy coalition letter to Tennessee General Assembly opposing Medicaid block grants.
  • March 29: Ad-hoc patient advocacy coalition statement regarding the approval of Utah's proposal to partially expand the state's Medicaid program.
  • March 28: Ad-hoc patient advocacy coalition statement supporting court ruling on Medicaid work and community engagement requirements and association health plans.
  • March 22: CF Foundation comments to Idaho Medicaid director supporting state Medicaid expansion.
  • March 11: CF Foundation letter to Florida House of Representatives opposing Medicaid work and community engagement requirements.
  • March 4: Ad-hoc patient advocacy coalition letter to Virginia Gov. Northam opposing legislation that would destabilize the Virginia insurance market.
  • February 8: Ad-hoc patient advocacy coalition comments to Mississippi Division of Medicaid providing input in the proposed Mississippi Medicaid Patient Advisory Council.
  • January 22: CF Foundation comments to South Carolina HHS Director regarding the state's proposal to add work and community engagement requirements to its Medicaid program.

2018 Federal Activity

  • December 18: Ad-hoc patient advocacy coalition comments to HHS, CMS, and the Department of the Treasury opposing 1332 State Relief and Empowerment Waiver guidance.
  • December 18: Ad-hoc patient advocacy coalition letter to HHS, CMS, and the Department of the Treasury opposing 1332 State Relief and Empowerment Waiver guidance.
  • December 18:  Ad-hoc patient advocacy coalition comments to DHS opposing a proposed rule to include use of health care programs in the definition of “public charge” for non-citizens.
  • December 17:   Ad-hoc patient advocacy coalition statement expressing concern regarding the district ruling in Texas v. United States.
  • December 10: CF Foundation letter to Rep. Bill Foster supporting the Medical Records Access Fairness Act.
  • November 30: CF Foundation comments to FDA on adaptive designs for clinical trials of drugs and biologics; draft guidance for industry.
  • November 9: Ad-hoc patient advocacy coalition letter to D.C.'s Committee on Health supporting legislation to protect consumers from new harms and risks associated with short-term, limited-duration, and association health plans.         

2018 State Activity

  • November 21: Ad-hoc patient advocacy coalition letter to HHS asking to suspend Arkansas's work and community engagement requirements and halt implementation of similar requirements in other states.
  • November 21: Ad-hoc patient advocacy coalition letter to D.C. Committee on Health supporting the restriction of association health plans and short-term, limited-duration plans.

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