Important new commitments on CF and other rare diseases

New Programme for Government ‘Our Shared Future’

The following is a summary of some of the key commitments in the new Programme for Government ‘Our Shared Future’ that will impact on people with CF and indeed people with rare diseases in general.

CFI has played a key role in advocating for many of these changes (along with the national networks in which we are involved). In particular the commitments to:

• Introduce a publicly funded model of care for fertility treatment 
  CFI has made detailed submissions to the Department of Health and HSE on this commitment that will no doubt be will be warmly welcomed by people with CF and their families. Until now, Ireland was one of the few countries in the EU without such as system.
   
• Publish an updated National Rare Diseases Plan
  CFI Chairs the Rare Disease Taskforce and is on the Department of Health Steering Group for the Plan.
   
• Enact the Human Tissue Bill, providing the legal basis for an opt-out system of organ donation and deliver a public information campaign. 
  CFI Chairs the Irish Donor Network and has coordinated advocacy on this issue for many years and CFI has made direct interventions.
   
• Establish a National Genetics and Genomics Medicine Network and supporting the medical genetics service in Crumlin Children’s’ Hospital 
  CFI has worked tirelessly with national patient networks to urge this innovative policy change that will shape the future of those with rare diseases that have a genetic origin, including CF.
   
• Introduce a cap on the maximum daily charge for car parking for parents and visitors at all public hospitals, where possible introduce passes in all public hospitals for parents and their families. 
  CFI has made many representations on this issue along with other patient groups.

Other commitments in the Programme for Government that will likely impact on CF 

• Extend discretionary medical cards to those with a terminal illness (we will need more detail on this)
• Promote research and, in particular clinical trials, which are key to improving the prevention, diagnosis and treatment of rare diseases
• Enact the National Research Ethics Committee Bill (badly needed and a key issued raised in the Irish Health Research Forum of which CFI was a founding member) 
• Establish a new National Medicines Agency to reduce the cost of medicines, including via generic prescription, where appropriate, and to set a fair price for drug reimbursement (more detail needed- sounds like this will replace the NCPE) 
• Commence talks with pharmacists on a new contract and enhancement of their role in the delivery of healthcare in the community, including via e-prescribing and issuance of repeat prescriptions
• Complete new national children’s hospital 
• Extend free GP care to more children
• New commitments in delivering e-health including lessons learned from COVID-19 and electronic patient records (about time!)