Campaign for Access to Modulators for those with rare mutations

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**Update 9th April 2025** - We are delighted to share the announcement from Vertex Pharmaceuticals that the European Commission has granted regulatory approval for a label extension of KAFTRIO^® in a combination regimen with ivacaftor for the treatment of people with Cystic Fibrosis. Read more in the media coverage section below of click here.

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This continues to be a priority area for CFI and will be strongly supported by the organisation and its working group through 2025. The core aim of the group is to campaign for access to modulators for the 6.7% who do not have access due to rare mutations. Submissions have been made to the CHMP representatives in Ireland outlining the importance of access to trials of modulators for anyone who may stand to benefit this including perspectives from parents of children without access to modulator therapies due to rare mutations.

CFI and the Access to Medications working group are campaigning on behalf of the 6.7% of the Irish Cystic Fibrosis population who currently do not have access due to their gene types.

There are many positive stories of people benefitting directly from the Modulator Therapies. Many of these have been covered in the media and report life changing and life altering results. Despite studies conducted throughout Europe proving that these modulator therapies may positively benefit those with rare gene mutations, this group, among them children, still do not have access.

If you have been affected by this issue and would like to get involved, or if have any questions, please contact us on memberservices@cfireland.ie

Since its formation the working group has now grown to 4 members and continues to build momentum. If you would like to be a part of this campaign please reach out to a member of the team memberservices@cfireland.ie

Click below or scroll down to the Related News for reecent news items. 

Regulatory approval granted for a label expansion of KAFTRIO® to those with rare gene variants | Cystic Fibrosis

Time is precious’ – children with rare cystic fibrosis gene denied access to potentially life-extending therapies

Irish Independent- Wicklow edition 27th January 2025

Call for children with cystic fibrosis and rare genes to gain access to life-saving therapy

Campaign for Access to Mortgages and Mortgage Protection products

CFI have established a working group to support our campaign for better access to mortgages for those with CF. The working group is made up of a cross section of representatives to include members of the financial sector whose core aim is to address mortgage protection and its barriers for those who seek access to home ownership. The group currently is looking to build upon its information to understand better the numbers affected in addition to looking to other European countries to understand alternative methods of supporting home ownership for those with CF.

A sub-group has also been formed with members of the DFI in efforts to join together collectively to share knowledge and drive change within the area of accessing mortgages and mortgage protection.

If you would like to be a part of this campaign please reach out to a member of the team memberservices@cfireland.ie

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**Update 25th July 2025**

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Cystic Fibrosis Ireland (CFI) recently made a submission to the UNCRPD alternative report to highlight the current situation with respect to access to mortgage and specifically access to mortgage protection insurance. We have challenged Article 19 – the right to Live Independently and be included in the community.

Article 19 guarantees the right of persons with disabilities to live independently and be included in the community, which includes access to housing on an equal basis with others. Preventing individuals with Cystic Fibrosis from obtaining a mortgage due to an insurance technicality infringes upon this right and perpetuates social and economic exclusion.
 
The recommendations put forward in the submission document were as follows:
 
Clarify State Obligations Under Article 19 Regarding Financial Inclusion
Recommendation: The Committee should provide interpretive guidance to State Parties, including Ireland, explicitly stating that financial services, such as access to mortgage protection insurance are essential components of independent living and must be provided on an equal basis to persons with disabilities.
 
Mandate Non-Discriminatory Access to Insurance Products
Recommendation: Call on Ireland to enact or enforce legislation requiring insurance providers to assess individuals on a case-by-case basis rather than issuing blanket refusals based on disability diagnoses like Cystic Fibrosis. This aligns with Article 5 (equality and non-discrimination) and supports Article 19’s implementation.
 
Ensure Reasonable Accommodation in Mortgage Lending and Insurance
Recommendation: Urge the Irish State to ensure that banks and insurers offer reasonable accommodation for people with CF seeking mortgage protection insurance, such as:
•    Alternative underwriting models based on individual health data,
•    Access to state-backed Mortgage Protection Insurance alternatives or waivers,
•    Independent appeal mechanisms for denied applications.
 
Establish Oversight and Monitoring Mechanisms
Recommendation: Recommend that the Irish Government establish an independent monitoring mechanism to track access to financial services for persons with disabilities, with specific indicators related to home ownership, mortgage protection insurance access, and equitable treatment in lending decisions.
 
Support Data Collection and Research
Recommendation: Encourage the Irish State to collect and publish disaggregated data on mortgage approval rates, mortgage protection insurance access, and home ownership among people with Cystic Fibrosis and other disabilities, to inform targeted policy reforms and support compliance with Article 31 (statistics and data collection) of the UNCRPD.
 
We continue to work as an organisation on the campaign for access to mortgages and mortgage protection products. If you would like more information on this work please reach out to a member of the services team.