A Call for Genomic Profile Testing for Every Cancer Patient in Scotland

Today, at the Cancer Research UK annual Scottish Cancer Conference The Scottish Precision Medicines Industry Group (SPMIG) in collaboration with the health communications consultancy firm Ettrickburn Limited, has published a report calling for routine access to targeted genomic profile testing for all Scottish NHS cancer patients. This industry group (the SPMIG) comprises four pharmaceutical companies (AstraZeneca UK, Eli Lilly & Company, Novartis UK and Roche UK) and Ettrickburn Limited interviewed a variety of stakeholders for this report (cancer clinicians, service managers, scientists and patient advocates). 

Genomic profile testing enables the specific molecular markers that define a patient's cancer to be identified. Many modern cancer medicines work by targeting these specific markers. Treating a patient with a drug that is specific to the markers that their cancer displays is a concept known as precision medicine. This enables targeted treatments to be given to a patient that can lead to better patient outcomes with potentially less side effects.    

The SPMIG industry group is calling for a step change in the genomic testing strategy to ensure that Scotland can meet the growing number of precision medicine treatments. Currently, when a precision cancer medicine becomes available for use by NHS Scotland the prerequisite genomic profiling diagnostic test, that can determine if a patient could be eligible for that treatment, may not be available in a Scottish laboratory. This then makes it impossible for an NHS Scotland approved medicine to be used by that patient and the patient may have to wait months until the diagnostic test is available in the NHS genomic laboratory.

Furthermore, many clinical trials use these genomic profiling tests to determine if a patient is eligible to enrol onto them. Without the results of these tests these patients can lose the opportunity to take part in a clinical trial that is researching a new cancer medicine. 

The report recommends that NHS Scotland:

• Supports comprehensive genomic testing appropriate to each cancer type at diagnosis
• Creates an early engagement and a decision process that ensures companion genomic profiling diagnostic tests, that determine eligibility for new precision medicines, are available for patients when these new medicines are approved for use by NHS Scotland.
• Accelerates and provides equitable access to precision treatments. 
• The report also calls for the Scottish Government to further invest into Scotland’s genomic laboratories, its workforce and associated data infrastructure across a three, five and 10-year time frame. 

The report identified the need for a “Once for Scotland” Precision Medicine strategy that will enable a transformation in the way genomic testing services are delivered in the long term. This will allow for Scotland to meet the treatment opportunities that new targeted precision medicines can provide for patients. 

The report highlights that although the Scottish Government is committed to investing in a ‘transformation’ of Scotland’s network of four specialist genomic laboratories, these laboratories currently face unprecedented pressure and interviewees noted the necessity of this extra funding. The report notes that the retention and recruitment of additional staff must be a pivotal part of any strategy for Scotland’s molecular diagnostic services.

It was generally accepted by all of the respondents interviewed by this report that the workforce is the biggest issue and challenge when seeking to expand the regional laboratory network to meet growing demand. Many NHS staff and academic colleagues also noted in their interviews that they wanted to collaborate with each other on research projects that could benefit patients, but NHS staff lacked the ability to further these projects because of workload constraints. 

Lesley Stephen, a trustee of Make 2nds Count, contributed her experience of living with secondary breast cancer to this report and joined the call for greater access to genomic profiling testing for all NHS Scotland patients.  

Lesley said: “If there is one request I would have of policymakers seeking to create a molecular diagnostic service for Scotland, and a strategy to go with it, it would be: please hurry up. We have the tools and knowledge to do much better for cancer patients, and to start to base their treatment more on the science and less on a 'fingers crossed', guesswork approach. Scotland as a small country could and should lead the way on this.”

A similar call for a change in regulations to ensure that biomarker tests and molecular profiling of cancers become a routine part of NHS care was made by the Institute of Cancer Research in August 2022.