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Kate calls for access to precision medicine Orkambi for people with cystic fibrosis


Kate is calling on the Health Minister to do all he can to ensure people with Cystic Fibrosis get access to new medicines that could prolong and enhance their lives.


Kate has backed an ongoing campaign by the Cystic Fibrosis Trust to ensure access to precision medicines in the UK after attending an event held in Westminster by the Cystic Fibrosis Trust on Wednesday, 29th November.

The event brought together parliamentarians and constituents affected by the condition to support the campaign for access to new medicines for those with Cystic Fibrosis and raise awareness of the issue.

One such drug is Orkambi, a precision medicine that 40 per cent of people with CF in the UK could benefit from. While conventional Cystic Fibrosis treatments target the symptoms, precision medicines tackle the underlying genetic mutations which cause the condition.

Orkambi is not a cure, but it has been found to slow decline in lung function – the most common cause of death for people with cystic fibrosis. It has also been shown to reduce pulmonary exacerbations requiring hospitalisation by up to 61 per cent.

Orkambi received its European license in November 2015 and in June the following year the National Institute of Health and Care Excellence (NICE) recognised Orkambi as an important treatment.

They did not recommend the drug, though, on grounds of cost-effectiveness and a lack of long-term data. This means it is unavailable to most people with cystic fibrosis across the UK.

However, more recent 96-week clinical data - not available at the time of appraisal - shows that Orkambi can reduce lung function decline by up to 42 per cent.

Kate said: “It is unacceptable that thousands of people across the UK continue to be denied a potentially life-saving drug.

“I am joining the campaign to call on the government to bring about better access to precision medicine and demand that a resolution is reached so that patients across the country can access Orkambi as a matter of the utmost urgency. People with cystic fibrosis deserve better.”

Cystic fibrosis is a life-shortening, inherited disorder leading to severely reduced quality of life and life expectancy. Half of all people who died with CF last year were under the age of 31.

People living with this devastating condition experience a build-up of thick, sticky mucus that causes chronic lung infections and progressive lung damage. Daily life can be a struggle and people with the condition face a huge burden of daily treatments, with the most basic tasks causing such breathlessness that oxygen is required to help them breathe. 

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