Here at METUPUK, we know drug access is a big issue for all metastatic breast cancer patients. There have been huge leaps and bounds made in terms of research, knowledge and potential treatment pathways but this is not always translating into clinical practice.  One of the biggest issues for both ductal and lobular oestrogen positive (ER+) breast cancer is treatment resistance.  This can happen for some patients within months of their first line of treatment.  

METUPUK representatives attended the UK Interdisciplinary Breast Cancer Symposium in Birmingham earlier this year.  There was a focus on oestrogen therapy resistance at this conference.  Oestrogen therapy resistance happens when our disease changes how it is behaving in order to work around the drugs we take so it can survive and spread.   

Two major issues of focus were oestrogen receptor (ESR1) and PIK3CA acquired gene mutations. The most prevalent of the ESR1 mutations being D538G and Y537S.   ESR1 mutations, like most things in life, are not created equal.  It is found specifically that Y537S (the second most common ERSR1 mutation) lacks sensitivity to Fulvestrant, yet this drug is often the next line of treatment offered to patients who progress on first line therapy by the NHS, and it is tied to many of the new drug combinations.   

This may translate into money being spent on drugs and offered to patients that may give little, if any, impact on their metastatic disease and which is not always recognised by NHS clinicians.  This issue could stem partially from initial trial design which influences how drugs are approved but surely must also relate to the NHS guidelines which struggle to keep pace with evidence-based research.  

Suddenly, the NHS treatment guidelines become a barrier to access effective treatment for patients, rather than treatment guidelines fulfilling their NHS description of “how healthcare and other professionals should care for people with specific conditions… based on the best available evidence.” 

In NHS practice, tumours are not routinely tested for ESR1 mutations, because no drugs which are targeted to them are currently approved.  So if you are reading this and wondering if your cancer has an ESR1 mutation, you are not alone.  In more encouraging news, there are several new drugs targeted to ESR1 mutations which are currently going through NICE.  The hope is that in the future patients will be given genomic testing on their tumours, and treatments which are more precisely targeted to their disease. 

At METUPUK, we campaign for personalised treatments so that patients can receive the best possible care.  Improved drug access allows us to stay #BusyLivingWithMets and increase our survival outcomes. 

We demand change.