Responding to Government

Federal

The National Health Genomics Policy Framework and Implementation Plan 2026 – 30

Open letter to Minister Butler on HTA reform

Cystic Fibrosis Queensland Response to Health Ministers Op Ed

Medicines Australia report

Budget 2026-27: A stronger care system for all Australians

PORTFOLIO BUDGET STATEMENTS 2026–27 BUDGET-RELATED PAPER NO. 1.9 – HEALTH, DISABILITY AND AGEING PORTFOLIO

Cystic Fibrosis Queensland Response to the Federal Budget – 2026

Full recommendations of the Health Technology Assessment Policy and Methods Review

Response letter from Dr. Leanne Laajoki from Dept. of Health, Disability & Ageing re: current challenges facing Australians living with chronic conditions.

Speech from the Hon. Mark Butler, AFR Healthcare Summit (March, 2026)

Patient & consumer letter to the Hon. Mark Butler, re: the Implementation Advisory Group’s HTA Reform Roadmap & Final Report (Feb, 2026)

Australian Gov. Productivity Commission Interim Report: Delivering quality care more efficiently (Aug, 2025)

Response from A/G Director Amanda Butler oBo the Hon Mark Butler, re: health reform for Australians living with CF (July, 2025)

CF Queensland letter of congratulations to PM Albanese: CFQ calls for bold health disability reform

Cystic Fibrosis QLD letter of congratulations to the Hon. Amanda Rishworth MP re: advancing equitable access to essential support for people with disabilities (Jan, 2025)

Cystic Fibrosis QLD letter of congratulations to Dr Anne Aly MP, re: addressing the unique needs of people with chronic illness and life-limiting genetic diseases

Open letter to the Hon. Mark Butler MP, re: Embedding Consumers as Partners in HTA Reform

Cystic Queensland QLD letter of congratulations to the Hon. Lia Finocchiaro MP (Sep, 2024)

Aus Gov. Dept of Health & Aged Care commissioned Recommendation Report:, Enhance HTA: An Enhanced Consumer Engagement Process is Aus Health Technology Assessment (June, 2024)

Media release: the Hon Dr Andrew Leigh MP re: Supporting philanthropic giving (May, 2025)

Cystic Fibrosis QLD: Federal Election Priorities (2022)

Media release from the Hon. Mark Butler MP re: Improving access to new medicines and treatments. (Sep, 2025)

The Hon. Mark Butler MP: Addess to the National Press Club. (Aug, 2025)

Budget 2024-25: New and amended Medicare Benefits Schedule (MBS) listings.

Media release from the Hon. Mark Butler MP: $148 million in new Medicare rebates for genetic testing. (Nov, 2023)

Cystic Fibrosis Queensland Letter Hon Mark Butler

Cystic Fibrosis Queensland Letter to the Prime Minister

Cystic Fibrosis Queensland submission to the PBAC Alyftrek

Cystic Fibrosis Queensland: Strengthening NFP’s

Cystic Fibrosis Queensland Federal Budget Response 2025

Cystic Fibrosis Queensland State of the Nation 2025

Cystic Fibrosis Queensland and Trusted Care Federal Budget Response 2023/2024

Cystic Fibrosis Queensland and Trusted Care Federal Budget Response 2022/2023

Cystic Fibrosis Queensland submission to the Insurance Unit, Treasury re: consultation on the use of genetic testing in life insurance underwriting

Cystic Fibrosis Queensland submission to the Select Committee on Cost of Living (Canberra)

Speech by the Hon, Trevor Evans, MP re: cystic fibrosis (May, 2018)

Media Release from the Hon. Michelle Landry MP, re: Trikafta Tied Up in Government Red Tape.

Letter from Nick Martin Chief of Staff for the Federal Minister for Health and Aged Care, to Hon Michelle Laundry MP, Federal Member for Capricornia, re Trikafta listing

Letter from Federal MP Elizabeth Watson-Brown & State MP Michael Berkman to the Hon. Mark Butler, Minister re: Access to Trikafta for young people with CF (September, 2022)

Response from the Hon. Mark Butler to Federal MP Elizabeth Watson brown & State MP Michael Berkman, re: Access to Trikafta for young people with CF (September, 2022)

State or Territory

Senator Katy Gallagher supports advocacy for the ACT Adult Cystic Fibrosis Service – Letter, September 2026

Cystic Fibrosis Queensland – Queensland budget response 2026

Cystic Fibrosis Queensland, letter of congratulations to the Hon. David Crisafulli MP (Nov, 2024))

Report No. 4, 58th Parliament Inquiry into volunteering in Queensland (Sep, 2025)

Cystic Fibrosis QLD State Budget Response 2024/2025 

Cystic Fibrosis QLD State Budget Response 2023-24

Cystic Fibrosis QLD State Budget Response 2022

Response to Cystic Fibrosis QLD from the Hon. Shannon Fentiman MP (March, 2024)

PTSS

Question on notice, No. 403, Asked on 22 April 2026, MR J MARTIN ASKED MINISTER FOR HEALTH AND AMBULANCE SERVICES (HON T NICHOLLS)

Letter from The Hon Tim Nicholls to Mr Neil Laurie, Clerk of the Parliament – in response to petition number 4350-25, tabled in Parliament on 22 April 2026, in relation to the Patient Travel Subsidy Scheme (PTSS).

Letter to The Honourable Tim Nicholls MP Re: Establishing a permanent stakeholder reference group for the Patient Travel Subsidy Scheme

Cystic Fibrosis QLD briefing note re: Reform of the PTSS, to Steven Miles, Leader of the Opposition

Cystic Fibrosis Queensland letter to The Hon, Tim Nicholls MP, Minister for Health and Ambulance Services – Re: Urgent reform of the Patient Travel Subsidy Scheme

CFRD

Response to correspondence to the Department of Health, Disability and Ageing

MSAC Survey for CGM – Cystic Fibrosis Queensland Submission

Letter from the Hon. Milton Dick MP to the Hon. Mark Butler MP re: Continuous Glucose Monitoring, Health Care Card and the rising cost of energy for people living with cystic fibrosis

Open letter to the Hon. Mark Butler MP re: removing inequity in the treatment of similar types of diabetes

Cystic Fibrosis QLD letter seeking support for CFDR to be included in the NDSS (Nov, 2021)

Cystic Fibrosis QLD letter to Dr Monique Ryan MP (Aug, 2023)

Cystic Fibrosis

 Letter to government: Urgent implementation of Health Technology Assessment reform to improve access to medicines for Australians living with cystic fibrosis and other rare diseases

Creon® (pancreatic extract) availability update from Viatris, June 12, 2026

Cystic Fibrosis Queensland Advocacy Update (2022)

Media release from the Hon. Mark Butler MP, re: cheaper medicines available for Australians with cystic fibrosis (Sep, 2025)

Article: Miracle drug helps mum-to-be go from possible lung transplant to pregnancy. (K. Lang, Courier Mail, 2022)

Cystic Fibrosis QLD Communique from 27 Mar 2022: Mission Accomplised: Trikafta on the PBS 1st April 2022.

Article: Better life for little Lachie: Subsidised drug to forever change future of cystic fibrosis sufferers. F. Ripper (2022)

Metro North Hospital and Health Service: Important Information for Queensland Lung Transplant Unit and Adult Cystic Fibrosis Centre Patients: Change to Medication Collection Arrangements (Mar, 2020) 

RSV

Outline your Experience with the Medical/Health Condition: The Impact of RSV on People living with Cystic Fibrosis and Post Lung Transplant

NDIS

Navigating the NDIS: A guide for people living with cystic fibrosis.

Reform, not retreat: Why the NDIS must be strengthened, not stripped back – Petrina Fraccaro, CEO, Cystic Fibrosis Queensland

Letter to the Hon. Mark Butler MP re: Urgent regulation of NDIS audit fees – Cystic Fibrosis Queensland

Cystic Fibrosis QLD letter to The Hon, Bill Shorten MP, re: changes to the NDIS Dec 2021 (June, 2022)

Response from the Hon. Emma McBride MP to Cystic Fibrosis QLD re: NDSS, NDIS and HCC. (Oct, 2023)