CF Voices is a voluntary organisation set up with the specific aim of understanding the impact of CF on patient’s families and how treatment with CF modulators affects this. We will gather information through a series of research projects - some of our own and some in partnerships - to gain insights that can be used to give CF families a voice within the healthcare system in England.
CF Voices is represented on the NICE Interim Access Oversight Committee (IAOC) for the Vertex scheme for Orkambi & Symkevi.
In the first instance, CF Voices carried out a research project to study the impact of CF on families across March and April 2020. Within the research we looked at the effects of CFTR modulator medicines; Orkambi, Symkevi and Kalydeco on the community caring for patients previously untreated, as well as the impact on those with loved ones still untreated.
The project organising team is made up of parents of children with cystic fibrosis (CF) and its aims are to develop a unique, in-depth understanding of the dynamic situation amongst CF families, which has seen access to life changing treatment addressing the underlying cause of many types of CF for the very first time. The team has experience of raising and caring for children with CF from babies, when there was no effective treatment to slow the decline of any form of the condition.
Now there is hope for thousands of patients and their families across the Country as we have the opportunity to watch loved ones start treatment with modulator drugs. We will assess the impact treatment has on their and their family’s lives over time. Sadly, there are thousands of other families for whom there is not currently a modulator, or any other treatment, available. CF Voices aims to support access to future medicines for these and all families by demonstrating the impact of CF extends beyond the patient and highlight any differences in quality of life experienced by carers of treated and untreated patients.
CF Voices is uniquely placed as the only organisation for the sector focussed solely on researching and advocating for carers. Understandably most of the data previously collected, and the subject of most debate, is the effect of modulator drugs on patients. However, given the nature of CF as a genetic condition that causes considerable ill effects from birth and for life, the impact on families is substantial and deserves its own in-depth analysis - as well as consideration in drug appraisal processes. Our first study has given a previously unheard voice to those providing direct care to patients and we hope to widen our scope in the future.
If you would like to register your interest in potentially being a part of our research project, please fill out the form below. We will email you when we are ready to launch. Thank you.