4th April 2024

‘No one should have to wait longer than 14 days for genetic testing’

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Lung cancer charity calls on Secretary of State for Health and Social Care, Victoria Atkins, to order directive to NHS for genomic testing for lung cancer.

Picture the scene… You receive the devastating news that you have lung cancer. You undergo a series of tests, including genetic tests, to determine the type of lung cancer, its stage and the treatment options available. The results of the genetic tests can take six weeks or more so, rather than leaving the cancer untreated, you’re treated with maintenance chemotherapy.

Your genetic test results come back and show you have a genetic mutation. This should be ‘good’ news (in an otherwise awful situation). It should open up a fantastic new line of treatment options called targeted therapy, treatments which specifically target the tumours and that many patients have had an incredible response.

It should give you the chance to regain some control in a scary and overwhelming new world.

This is what should happen…

Except because you had to wait for so long and didn’t want to let your cancer go untreated, you no longer qualify for this treatment. This treatment is a first-line treatment which means you can’t have it if you have had another treatment… which you did. You had maintenance chemo because the results for the genetic testing took so long – too long – to come back.

We would like to say this is a one-off, a heartbreaking situation that one person had to go through.

Sadly, it is not.

Delays to genetic testing – or lack of testing altogether – is severely impacting on lung cancer patients across the UK, denying them the chance of life-lengthening treatment and a better quality of life. This shocking situation has prompted Roy Castle Lung Cancer Foundation to take action.

Time for Action

On Wednesday 27th March charity chief executive, Paula Chadwick, along with chair of the Lung Cancer Clinical Expert Group, Prof. David Baldwin and Roy Castle Lung Cancer Foundation trustee, Cathy Brokenshire meet with Secretary of State for Health and Social Care, Victoria Atkins. National Clinical Director for Cancer, Professor Peter Johnson, was also in attendance, with Senior Responsible Officer for Genomics in NHS England, Professor Dame Sue Hill joining via video call.

After much discussion about the current situation, a plan of attack was agreed and a further meeting set for three months.

“This is the second time we have meet with the Health Secretary to discuss this urgent matter,” explains Paula Chadwick.

“We first met with the former Health Secretary, Steve Barclay in July 2023 and are pleased that, like her predecessor, Victoria Atkins, too recognise the need for significant improvement within the field of genomics.

This month marks my 27th year at Roy Castle Lung Cancer Foundation so I know more than anyone the progress that has been made. It used to be the case that chemotherapy was the only option to treat lung cancer. We now have many treatment options, so it is an utter travesty that people are being denied the chance of these new and often life-lengthening treatments.

“Having successfully campaigned for the implementation of lung cancer screening, this is our next ambition. We want everyone who is diagnosed with lung cancer to undergo genetic testing and for a 14-day directive to be introduced within the lung cancer pathway to ensure all results are received within this two-week window.

“People with lung cancer do not have time to wait. We now have treatments available that can significantly improve their quality of life. They may not cure this awful disease but they can give people more time with their loved ones and we will do everything in our power to see this through to completion.”