In recent years, there has been great progress in improving access to precision medicines that can tackle the root causes of Cystic Fibrosis (CF).
Since 2019, thousands of people with CF have been able to benefit from licensed treatments being made available through the NHS in England. As a result, I fully recognise the disappointment that many people with CF and their and families will have felt at the initial decision by NICE not to recommend Orkambi, Symkevi and Kaftrio for use in the NHS.
Over the next month, NICE will be consulting on the recommendation and I know that patient groups like the Cystic Fibrosis Trust intend to share the views and experiences of people with CF and their families. My understanding is that this recent decision does not apply to anyone with CF who is currently taking a modulator therapy.
I also understand that the Cystic Fibrosis Trust has been highlighting the issues faced by people with cystic fibrosis around PIP assessments. Landmark reforms to the benefits system set out in the Health and Disability White Paper, “Transforming Support”, will change the emphasis from what people cannot do to what they can by legislating to abolish the Work Capability Assessment (WCA) so that in future years there is only one functional health and disability assessment – the Personal Independence Payment (PIP) assessment. PIP helps with the extra costs of a disability or long-term health condition.
The PIP assessment will also be improved by changes announced in the White Paper, including by continuing to test the introduction of a Severe Disability Group for those with the most severe health conditions, so they do not need to complete a detailed application form or go through an assessment.