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.

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Summary
  • Part of our advocacy work is issuing statements, regulatory comments, and letters to key federal and state policy and decision-makers as new policies, proposals, and issues arise.
  • This form of advocacy allows us to directly correspond with the policy and decision-makers to further educate them on cystic fibrosis and what it means to live with the disease.

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.

Vaccine-related Activity

The CF Foundation recognizes the urgency and importance of ensuring people living with CF have priority access to COVID-19 vaccines. Read more about our advocacy efforts here.

2021 Federal Activity

  • March 3: CF Foundation letter supporting the Telehealth Modernization Act, a bill that would extend and expand access to critical telehealth services after the current public health emergency.
  • February 25: CF Foundation submits statement for the record to the House Energy and Commerce Subcommittee on Health to pass legislation, including the Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act, that increases access to essential telehealth services.
  • February 11: Partnership to Protect Coverage (PPC) statement for the record to the House Energy and Commerce committee regarding provisions included in the COVID-19 reconciliation package.
  • February 10: PPC statement for the record to the House Ways and Means committee regarding the COVID-19 reconciliation package.
  • February 1: PPC letter to Congressional leadership on COVID-19 legislation.
  • February 1: PPC letter to Congressional leadership on health care priorities for reconciliation.
  • January 4: CF Foundation comments on U.S. Department of Health and Human Services’ (HHS) interim rule regarding COVID-19 vaccine coverage, Medicaid maintenance of effort, and Section 1332 waiver process during the public health emergency.

2021 State Activity

  • November 29: CF Foundation letter to the Colorado Department of Public Health and Environment urging the state to revisit its crisis standards of care plans so that they do not discriminate against individuals with underlying health conditions.
  • October 18: CF Foundation letter to Florida’s lieutenant governor asking the state to adopt a crisis standards of care plan that does not discriminate against individuals with underlying health conditions.
  • October 13: CF Foundation letter to Kansas Department of Health and Environment asking the state to adopt a crisis standards of care plan that does not discriminate against individuals with underlying health conditions.
  • September 23: Ad hoc patient coalition comment letter to NYS Medicaid director regarding redetermination the COVID-19 public health emergency. (*Note: similar letters sent to all 50 states and the District of Columbia.)

  • September 1: CF Foundation comment letter to the governor of Oklahoma opposing the state's ban on mask mandates.
  • August 24: CF Foundation comment letter to the governor of Utah opposing the state's ban on mask mandates.
  • August 24: CF Foundation comment letter to the governor of South Carolina opposing the state's ban on mask mandates.
  • August 24: CF Foundation comment letter to the governor of Iowa opposing the state's ban on mask mandates.
  • August 24: CF Foundation comment letter to the governor of Florida opposing the state's ban on mask mandates.
  • August 24: CF Foundation comment letter to the governor of Arizona opposing the state's ban on mask mandates.
  • July 30: CF Foundation comment letter to the Arkansas legislature opposing the state's ban on mask mandates.

2020 Federal Activity

  • December 18: PPC comment letter to HHS on the interim final rule regarding COVID-19 vaccine coverage, Medicaid maintenance of effort, and Section 1332 waiver process during the public health emergency.
  • December 9: PPC letter to Congressional leadership on the importance of passing telehealth legislation by the end of the Congress.
  • September 24: PPC statement on principles for telehealth policies.
  • August 27: PPC outlines principles for telehealth policies.
  • August 25: Ad hoc patient advocacy coalition letter to the United States Postal Service expressing concern about the altered operations and package delays. 
  • 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 urging they 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 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 23: 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 the NIH 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.

2020 State Activity

  • December 11: Ad hoc patient advocacy coalition letter to the governor of Montana asking the state to adopt COVID-19 crisis standards of care guidelines that do not discriminate against people with chronic conditions.
  • December 11: Ad hoc patient advocacy coalition letter to the governor of New Mexico asking the state to revise its COVID-19 crisis standards of care guidelines to ensure that guidance does not discriminate against people with chronic conditions.
  • December 11: Ad hoc patient advocacy coalition letter to the governor of Oklahoma asking the state to adopt COVID-19 crisis standards of care guidelines that do not discriminate against people with chronic conditions.
  • November 19: Ad hoc patient advocacy coalition letter to the governor of Arkansas asking the state to adopt COVID-19 crisis standards of care guidelines that do not discriminate against people with chronic conditions.
  • November 19: Ad hoc patient advocacy coalition letter to the governor of North Dakota asking the state to adopt COVID-19 crisis standards of care guidelines that do not discriminate against people with chronic conditions.
  • November 19: Ad hoc patient advocacy coalition letter to the governor of South Dakota asking the state to adopt COVID-19 crisis standards of care guidelines that do not discriminate against people with chronic conditions.
  • November 19: Ad hoc patient advocacy coalition letter to the governor of Indiana asking the state to adopt COVID-19 crisis standards of care guidelines that do not discriminate against people with chronic conditions.
  • October 30: CF Foundation letter to Florida Medicaid requesting the program extend several temporary telehealth flexibilities throughout the current public health crisis.
  • October 1: CF Foundation comments to Ohio Department of Medicaid in support of a proposed rule that would make permanent many flexibilities implemented during the COVID-19 pandemic that expand access to telehealth services.
  • 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 27: Ad hoc patient advocacy coalition letter to governor of Florida 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

2021 Federal Activity

  • November 19: PPC statement supporting the House passage of the Build Back Better Act.
  • November 19: PPC letter to HHS supporting the reversal of the Guidance, Enforcement and Adjudication Procedures rule.
  • November 15: Ad hoc coalition of 300+ organizations call on Congress to finalize its FY22 spending bills including a robust investment in the NIH.
  • November 7: CF Foundation’s comments on HHS’ 2022-2026 Strategic Plan.
  • November 7: PPC comments on HHS’ 2022-2026 Strategic Plan.
  • October 5: Patient advocacy coalition letter to Congressional leadership urging critical patient protections specifically related to affordability in Medicare Part D are including in the final reconciliation package.

  • September 30: CF Foundation comments to UNOS on establishing the continuous distribution of lungs.

  • September 29: CF Foundation response to an NIH request for information on developing consent language for future use of data and biospecimen sharing.

  • August 23: Ad hoc patient coalition letter to Congressional leadership urging authorization and funding for a national paid family and medical leave program that includes paid leave benefits for individuals with serious illnesses and health conditions, as well as their caregivers.

  • August 12: PPC letter to HHS and CMS on implementing the No Surprises Act.

  • July 30: PPC response to Murray-Pallone public option design RFI.
  • July 28: CF Foundation comments to CMS, HHS, and the U.S. Treasury on updating payment parameters, 1332 waivers, and improving health insurance markets for 2022 and beyond.
  • July 28: PPC comments to CMS, HHS, and the U.S. Treasury on updating payment parameters, 1332 waivers, and improving health insurance markets for 2022 and beyond.
  • July 14: PPC statement supporting the implementation of the No Surprises Act. 
  • July 6: PPC comments to Office of Management and Budget (OMB) on how the Administration can take action to advance equity in federal health care programs. 
  • June 22: S-FAR letter to the Senate HELP committee calling for support of the PASTEUR Act.
  • June 17: The CF Foundation updates the community on the U.S. Supreme Court's ruling in Texas v. California.
  • June 17: PPC statement praising the U.S. Supreme Court's ruling to dismiss Texas v. California, keeping the Affordable Care Act in place.
  • June 17: Ad hoc patient coalition statement applauding the U.S. Supreme Court's ruling to dismiss Texas v. California, keeping the Affordable Care Act in place.
  • June 9: PPC letter to HHS, Department of the Treasury, and Department of Labor calling attention to patient protections outlined in the No Surprises Act, enacted at the end of 2021.
  • May 25: Ad hoc coalition letter asking CMS to rescind Tennessee’s Medicaid waiver approval that includes harmful provisions to patient access and did not go through the proper public notice and comment period.
  • May 10: Ad hoc coalition statement praising the Administration’s action to preserve protections in the ACA for LGBTQ patients receiving health care services.
  • May 6: PPC statement urging Congress and the Administration to prioritize health care policies in the next legislative package.
  • April 23: PPC letter to Congressional leadership on health care priorities in the next legislative package.
  • April 23PPC letter to President Biden on health care priorities.
  • April 9: CF Foundation comments to the NIH on advancing and strengthening diversity, equity, and inclusion in the biomedical research workforce.
  • April 7: CF Foundation joins other patient advocacy organizations in amicus brief outlining our concerns around the pitfalls of selling skimpier plans on the individual market.
  • April 6: Ad hoc coalition letter asking CMS to rescind an interim final rule that allows states to cut benefits to their Medicaid programs.  
  • March 25: PPC statement announcing a new report on the spread of substandard health plans and policy recommendations for Congress and the Administration.
  • March 25: PPC publishes a new report on the spread of substandard health plans and policy recommendations for Congress and the Administration.
  • March 22: PPC submits statement for the record for the House Energy & Commerce Subcommittee on Health regarding ways to improve or reform key components of the United States health care system.
  • March 18: S-FAR letter to the House Committee on Appropriations with recommendations for FY22 funding levels for antimicrobial resistance programs.
  • March 18: S-FAR letter to the U.S. Senate Committee on Appropriations with recommendations for FY22 funding levels for antimicrobial resistance programs.
  • March 8: Ad hoc coalition letter to the House Committee on Appropriations calling for prioritized funding for the CDC and the U.S. Health Resources & Services Administration (HRSA) to support newborn screening programs.
  • March 8: Ad hoc coalition letter to the U.S. Senate Committee on Appropriations calling for prioritized funding for the CDC and the U.S. Health Resources & Services Administration (HRSA) to support newborn screening programs.
  • March 3: CF Foundation comments on CMS’s final rule on organ procurement organizations conditions for coverage.
  • February 25: Ad hoc coalition statement urging the U.S. Supreme Court to protect access to Medicaid and rule against work and community engagement requirements.
  • February 23: S-FAR letter calling on the Administration to prioritize antimicrobial resistance at the 2021 G7 summit.
  • January 29: PPC statement on President Biden’s two executive orders to protect people with pre-existing conditions.

2021 State Activity

  • November 19: CF Foundation letter to Texas’s HHSC executive commissioner to request full funding for Medicaid and CSHCN programs.
  • October 27: CF Foundation letter to California’s Health Care Delivery Systems urging the state’s Children’s Services and Genetically Handicapped Persons Program to add coverage for inhaled hypertonic saline solution.
  • October 19: CF Foundation comment letter to HHS on Arkansas’s Medicaid waiver application, opposing waiving retroactive eligibility and copays.
  • October 19: Ad hoc patient coalition comment letter HHS on Arkansas’s Medicaid waiver application, opposing waiving retroactive eligibility and copays.
  • October 11: CF Foundation letter to Ohio Department of Medicaid asking the state to ensure a streamlined transition to new managed care plans and a single pharmacy benefit manager.
  • October 4: CF Foundation letter the Michigan State Senate Health Policy Committee members requesting a hearing for a bill that would ban copay accumulator programs.
  • September 28: CF Foundation letter to Massachusetts Joint Committee on Financial Services supporting a bill banning copay accumulator programs.
  • September 9: Ad hoc patient coalition comment letter to U.S. HHS secretary on Tennessee’s Medicaid waiver application, supporting expansion and opposing proposed block grants, waiving retroactive eligibility, and 10-year approval.
  • September 9: CF Foundation comment letter to U.S. HHS secretary on Tennessee’s Medicaid waiver application, supporting expansion and opposing proposed block grants, waiving retroactive eligibility, and 10-year approval.
  • August 24: CF Foundation letter to New York Medicaid asking that the program allow all CF care centers to cover airway clearance devices for Medicaid patients.
  • August 9: CF Foundation letter to New Jersey’s Department of Health urging the agency to distribute full funding to the Pharmaceutical Services for Adults with Cystic Fibrosis program.
  • July 23: Ad hoc patient coalition comment letter to HHS supporting Medicaid expansion in Tennessee but opposing components of the state’s plan to implement block grant funding and eliminate retroactive eligibility for enrollees.
  • July 9: CF Foundation letter supporting New Jersey's efforts to join the Interstate Medical Licensure Compact (IMLC).
  • July 8: CF Foundation Letter to Arkansas’s Director of Division of Medical Services opposing proposed Medicaid changes that would limit retroactive coverage and implement copays.
  • July 8: CF Foundation comment letter to the director of TennCare supporting Medicaid expansion in the state but opposing proposed block grant funding, retroactive eligibility waiver, and 10-year approval.
  • July 8: Ad hoc patient coalition comment letter to the director of TennCare supporting Medicaid expansion in Tennessee but opposing components of the state's plan to implement block grant funding and eliminate retroactive eligibility. 
  • July 6: CF Foundation letter to California's governor in support of a bill that would extend the California Children's Services Advisory Group for two years. 
  • June 30: Ad hoc patient coalition statement on amicus brief filed in the Missouri Supreme Court on the vital role Medicaid expansion would have in the state.
  • June 30: CF Foundation joins 20 other patient advocacy organizations in an amicus brief filed in the Missouri Supreme Court noting the vital role that Medicaid expansion would have in the lives of Missourians.
  • June 25: Ad hoc patient advocacy coalition comments asking the federal government to approve Colorado’s request to extend its reinsurance program.
  • June 15: Ad hoc patient advocacy coalition letter to Ohio legislative leadership expressing concerns with a budget bill proposal that could lead to mass Medicaid disenrollment and coverage loss.
  • June 18: CF Foundation letter supporting Missouri’s bill that would add the state as a member of the IMLC.
  • June 9: CF Foundation letter supporting Ohio’s bill that would add the state as a member of the IMLC.
  • June 2: CF Foundation letter to the New York Assembly Ways and Means Committee expressing support for the permanent reinstatement of the New York Adult Cystic Fibrosis Assistance Program.
  • May 26: Ad hoc patient advocacy coalition letter to Ohio Senate Committee on Oversight and reform asking lawmakers to oppose legislation that would make several procedural changes to Medicaid eligibility verification.
  • May 19: CF Foundation letter supporting Ohio’s bill that would add the state as a member of the IMLC.
  • May 14: Ad hoc coalition statement opposing Missouri’s decision to halt Medicaid expansion.
  • May 7: CF Foundation letter supporting North Carolina’s bill that would add the state as a member of the IMLC.
  • May 6: CF Foundation letter to New York State Assembly Insurance Committee supporting legislation that would limit insulin copayments.
  • May 6: CF Foundation letter to Ohio’s Senate Health Committee asking legislators to support continued funding for the state’s Medicaid and Children with Medical Handicaps (CMH) programs.
  • April 28: CF Foundation testimony to the Wisconsin Joint Committee on Finance asking legislators to support continued funding for the state’s Medicaid and Wisconsin Chronic Disease Program (WCDP) including the Adult CF Program.
  • April 22: CF Foundation letter supporting Texas’s bill that would add the state as a member of the IMLC.
  • April 22: Ad hoc coalition comment letter to the U.S. HHS secretary supporting Oklahoma’s request to expand Medicaid but opposing its proposal to remove retroactive eligibility.
  • April 22: Ad hoc coalition statement expressing disappointment in the Missouri Senate Appropriation Committee’s decision to approve a budget that does not include funding for Medicaid expansion which was approved by a ballot initiative in 2020.
  • April 21: CF Foundation letter to Minnesota’s Medicaid director asking the state to revise its Trikafta coverage criteria to align with the FDA-approved label.
  • April 19: CF Foundation letter to Florida’s House HHS Finance and Facilities Subcommittee supporting legislation banning co-pay accumulator programs.
  • April 19: CF Foundation letter to Florida’s Senate Committee on Health Policy supporting legislation banning co-pay accumulator programs.
  • April 16: CF Foundation letter to Maine state senator Anne Carney thanking her for supporting the CF community.
  • April 14: CF Foundation letter to Missouri’s governor asking for support in funding Medicaid expansion, as well as the Adult Cystic Fibrosis Treatment Program.
  • April 6: CF Foundation letter to Indiana’s governor asking for his support of continued funding for the state’s Medicaid and Children’s Special Health Care Services program.
  • April 6: CF Foundation letter to Maine’s House HHS Committee offering support for the state’s efforts to study the unmet needs of rare disease populations.
  • March 31: CF Foundation letter to Texas Senate Business and Commerce Committee supporting a bill that would ban copay accumulator programs.
  • March 31: CF Foundation letter to Texas House of Representatives Insurance Committee supporting a bill that would ban copay accumulator programs.
  • March 24: CF Foundation letter to Illinois House Insurance Committee supporting a bill that would limit insulin copayments.
  • March 17: CF Foundation letter to Michigan’s House of Representatives Health Policy Committee supporting a bill which would limit insulin copayments.
  • March 16: CF Foundation testimony to Maine’s Health and Human Services Committee supporting a bill to restore previously cut eligibility and covered services for Maine’s Children with Special Health Needs CF Assistance Program.
  • March 16: CF Foundation letter to Texas’s Senate HHS Committee supporting a bill which would limit insulin copayments.
  • March 15: CF Foundation testimony to Ohio’s House Finance Committee asking members to support continued funding for the state’s CMH program.
  • March 10: CF Foundation letter to Michigan House Health Policy Committee supporting a bill that would ban copay accumulator programs.
  • March 9: Ad hoc coalition letter to Virginia’s governor asking he sign a bill into law that would create a state reinsurance program and lower health care premiums in the state’s marketplace.
  • March 2: CF Foundation letter to Ohio’s Finance Subcommittee on Health and Human Services supporting continued funding for the state’s CMH program.
  • March 1: CF Foundation letter to Ohio’s House of Representatives’ Health Committee supporting legislation banning copay accumulator programs.
  • February 26: CF Foundation letter to Tennessee’s Joint Committee on Pension and Insurance supporting legislation banning copay accumulator programs.
  • February 4: CF Foundation written testimony to the New York State Assembly Ways and Means committee and the Senate Finance committee supporting the restoration of the Adult Cystic Fibrosis Assistance Program.
  • February 4: CF Foundation written testimony to the South Dakota Senate Commerce and Energy Committee supporting legislation to ban copay accumulator programs.
  • February 3: CF Foundation comments to HHS urging the federal government to reject Arizona’s request to extend authorization for work and community engagement requirements.
  • February 3: CF Foundation comments to Oklahoma’s Health Care Authority opposing the state’s request to eliminate Medicaid retroactive coverage for all non-pregnant adults
  • February 2: All Copay Counts Coalition (ACCC) letter supporting Oregon legislation which would ban copay accumulator programs.
  • February 1: CF Foundation letter to the governor of Alabama asking the state to support funding for Medicaid in the state’s upcoming budget. *Note: similar letters were sent to all 50 states.
  • January 19: CF Foundation letter to Texas state senator Jane Nelson supporting funding for the state’s Children with Special Health Care Needs Program.
  • January 19: CF Foundation letter to Texas state senator Lois Kolkhorst supporting funding for the state’s Children with Special Health Care Needs Program.
  • January 19: CF Foundation letter to Texas state representative Giovanni Capriglione supporting funding for the state’s Children with Special Health Care Needs Program.
  • January 15: CF Foundation letter to New York State health department regarding the state’s plan to transition the Medicaid pharmacy benefits from managed care to fee-for-service.
  • January 14: Ad hoc coalition letter asking Tennessee to reject the implementation of Medicaid block grants.
  • January 8: Ad hoc coalition statement opposing the federal government’s approval of Tennessee’s implementation of block grants for its Medicaid program.

2020 Federal Activity

  • December 29: ACCC comments to CMS regarding fiscal year 2022 changes to Notice of Benefits and Payment Parameters.
  • December 28: PPC comments to CMS regarding fiscal year 2022 changes of Notice of Benefits and Payment Parameters.
  • December 21: CF Foundation comments to CMS regarding fiscal year 2022 changes of Notice of Benefits and Payment Parameters.
  • December 16: PPC statement applauding Congressional committee leaders for reaching a bicameral and bipartisan agreement to address surprise medical billing and urges Congress to enact the agreement swiftly.
  • December 16: S-FAR letter to President-elect Joseph R. Biden, Jr. asking for a renewed emphasis on combating antibiotic resistance.
  • December 14: PPC letter to Congressional leadership requesting a permanent extension of the 7.5% threshold for the medical expense deduction.
  • December 14: S-FAR letter to Senators Bennett and Young supporting the Pioneering Antimicrobial Subscriptions to End Upsurging Resistance (PASTEUR) Act.
  • December 14: S-FAR letter to Reps. Doyle and Ferguson supporting the PASTEUR Act.
  • December 9: CF Foundation joins more than a dozen patient-focused organizations in opposing a HHS rule that could allow for discrimination in providing health care services for LGBTQ individuals and reduces interpretation and translation services for people with limited English proficiency.
  • December 9: CF Foundation joins an amicus brief opposing an HHS rule that could allow for discrimination in providing health care services for LGBTQ individuals and people with limited English proficiency.
  • December 7: CF Foundation letter to President-elect Joseph R. Biden Jr., outlining important policy issues for the CF community.
  • December 4: PPC comments to HHS on Securing Updated and Necessary Statutory Evaluations Timely (SUNSET) Rule which required require review of all agency regulations on a ten-year basis with failure to review existing regulations resulting in expiration of a given rule.
  • December 4: CF Foundation comments HHS on the SUNSET Rule which required require review of all agency regulations on a ten-year basis with failure to review existing regulations resulting in expiration of a given rule.
  • November 23: PPC letter to President-elect Joseph R. Biden, Jr. asking for immediate steps to support the health of all Americans once in office.
  • November 9: Ad hoc patient advocacy coalition makes a statement urging the U.S. Supreme Court to prioritize patients and uphold the Affordable Care Act when it hears oral arguments in California v. Texas (formerly Texas v. United States) on November 10, 2020.
  • October 22: CF Foundation letter of support to Senators Bennet and Young in support of the PASTEUR Act.
  • October 13: PPC releases their 100 Days agenda which outlines the coalition’s top health care priorities for the next administration.
  • October 13: PPC statement announcing the release of the coalition’s 100 Days Agenda.
  • October 5: CF Foundation comments to CMS on their proposed Medicare Physician Fee Schedule for calendar year 2021.
  • October 1: CF Foundation comments to the United Network for Organ Sharing on updating the calculation of the lung allocation score. 
  • October 1: CF Foundation comments to UNOS on the organization’s continuous distribution of organs project.
  • 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 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 13: CF Foundation joins 19 other patient and consumer advocacy groups in filing an amicus brief with the United States Supreme Court in support of the ACA.  
  • May 8: CF Foundation comment letter on the PASTEUR Act, which would institute an antibiotic subscription model to address antibiotic resistance. 
  • April 28: CF Foundation statement on ICER’s revised evidence report on treatments for cystic fibrosis.
  • 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 infection antibiotic research, and drug development programs in fiscal year 2021.  
  • March 12: S-FAR letter to key Senate Appropriations Subcommittees 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 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 in 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

  • December 2: CF Foundation letter to Wisconsin’s Department of Health Services asking to preserve existing funding for the Wisconsin Chronic Disease Program and Medicaid in the state’s upcoming budget.  
  • November 30: CF Foundation comments asking Arizona to rescind its application to extend Medicaid work requirements and to restore Medicaid retroactive eligibility.
  • November 24: CF Foundation letter to the governor of Ohio asking for continued support of the state’s CMH program in the forthcoming biennial budget.
  • October 23: Ad hoc patient advocacy coalition letter to South Dakota’s Division of Insurance opposing the state’s proposed rule which expands the length and availability of short-term, limited-duration plans.
  • October 14: CF Foundation letter to Maine’s Department of Health requesting funding to restore full benefits and eligibility for the State’s Children with Special Health Needs assistance program in the agency’s budget request for the upcoming biennium.
  • October 2: Ad hoc patient advocacy coalition letter asking all states to ensure healthy voting options for people with chronic conditions during the general election.
  • October 2: Ad hoc patient advocacy coalition statement asking all states to ensure healthy voting options for people with chronic conditions during the general election.
  • October 1: CF Foundation letter to Illinois Department of Healthcare and Family Services asking the state to preserve Medicaid funding, eligibility, and benefits in the upcoming budget.
  • 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 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 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 supporting 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 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 response to a 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 Screening Coalition letter to 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 supporting the designation of a national week of awareness for nontuberculous mycobacteria.

  • June 17: CF Foundation letter to supporting the Family Coverage Act.

  • 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 6: CF Foundation letter on draft legislation aimed at improving Medicare Part D.

  • June 5: CF Foundation letter  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: Ad hoc patient advocacy coalition letter supporting of the Protecting Americans with Preexisting Conditions Act.

  • May 8: Ad hoc patient advocacy coalition letter 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 supporting the Protecting Americans with Preexisting Conditions Act.

  • April 24: CF Foundation letter supporting the Protecting Americans with Preexisting Conditions Act.

  • April 24: CF Foundation letter supporting the Family Health Care Affordability Act.

  • April 24: CF Foundation letter supporting the State Health Care Premium Reduction Act of 2019.

  • April 24: CF Foundation letter supporting 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 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 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 HHS 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.
  • November 4: CF Foundation comment letter to Michigan Department of Health and Human Services regarding the state’s proposal to transition pharmacy coverage from Medicaid managed care plans to fee-for-service Medicaid.
  • 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 exempting 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 CMH 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: Ad hoc patient advocacy 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: Ad hoc patient advocacy coalition letter to the Tennessee Medicaid director and insurance commissioner opposing Medicaid block grants.
  • July 10: Ad hoc patient advocacy 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: Ad hoc patient advocacy 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 the governor of Oregon 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 Florida's governor s opposing short-term, limited-duration health plans.

  • May 3: CF Foundation letter to Florida's governor opposing proposed changes to Medicaid retroactive eligibility.

  • April 30: CF Foundation letter to Oklahoma's governor  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 29: 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 14: Ad hoc patient advocacy coalition statement expressing concern regarding the district ruling in Texas v. United States.

  • December 10: CF Foundation letter 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 and consumer 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.

  • October 10: CF Foundation comments to FDA on draft guidance on human gene therapy for rare diseases.

  • October 3: CF Foundation comments to HHS on United Network for Organ Sharing/Organ Procurement and Transplantation Network proposal on framework for organ distribution.

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. 
  • October 26: CF Foundation comments to Tennessee’s Medicaid director opposing Tennessee’s proposal to institute Medicaid work and community engagement requirements.
  • October 26: CF Foundation comments to HHS opposing Michigan’s proposal to institute Medicaid work and community engagement requirements.
  • October 3: CF Foundation letter to Arizona’s Medicaid director asking for close monitoring of the transition from Arizona Health Care Cost Containment System to Complete Care.
  • October 1: Ad hoc patient advocacy coalition letter to HHS and CMS in supporting Maine’s Medicaid expansion.
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