We really need to raise awareness around what people with secondary cancer require, encouraging the debate to be placed upon the policy table. You can really help us by writing to your local MP (you find them here or here), whether you are a person ‘living with and beyond cancer’, or a friend or family who is supporting someone who is, or just think that this is an important issue as cancer affects us all.

Dear (your local MP,)

As a constituent of yours and someone affected by breast cancer (BC), I am asking for your help to raise awareness of significant treatment inequalities. I [have been / am] a [friend of / family member] of someone living with [primary / secondary] breast cancer for […..] years and patients with secondary breast cancer will be on treatment for life.

Every year in the UK around 55,000 women and 380 men are diagnosed with breast cancer and 11,500 lose their lived to the disease.  It is already the biggest killer of women under the age of 50 but going forward there will be even more deaths from breast cancer because of the pandemic which shut many breast services down. 

Pre pandemic we lagged behind other European countries with breast cancer survival rates, but post pandemic many cancer experts warn that we face a cancer crisis, a ticking timebomb.  Professor Gordon Wishart predicted that ‘survival rates will go backwards’ if we don’t make urgent changes to the treatment of cancer patients now.

A key issue is drug access for those who have a subtype of breast cancer, called HER2+.  A central drug in the treatment of women with Her2+ cancer is Herceptin (manufactured by Roche and also known as Trastuzumab).  Primary breast cancer patients get an additional year of Herceptin because data has shown it helps to reduce recurrence.  However advanced breast cancer patients are only allowed two lines of Herceptin, presumably on cost grounds, and then no longer have access to it.  This is despite Herceptin being a drug that has demonstrated improved survival in clinical trials

Around two years ago the Roche Herceptin patent expired, and the market was open to other companies to make a cheaper “biosimilar.  Some NHS patients now receive the cheaper but identical version of the drug, but still only for two lines.

In contrast, in most other high income countries Herceptin (or a biosimilar) is offered throughout a secondary breast cancer patient’s treatment journey as ‘standard of care’.  Indeed, Herceptin plus chemotherapy is used in clinical trials as a control arm, because failure to do so would be considered unethical under international standards of care.

Although Herceptin is not licenced or indicated for 3rd/+ line treatment, many oncologists do prescribe it later line alongside chemotherapy for their private patients, but they cannot do this for their NHS patients.  Some patients have to crowd fund to pay for Herceptin, but most patients do not have the resources to do this.  ESMO international guidelines show there is a 91% consensus amongst clinicians in using Herceptin in later lines, so the UK isn’t currently following international best practice.

And a recent study (Clinical Oncology, May 14 2020) by Professor Palmieri showed a clear desire amongst UK oncologists to prescribe Herceptin in later lines.

We believe there is an urgent unmet need within the UK drug approvals system and patients need for Herceptin 3rd+ line and beyond.  They are dying unnecessarily early due to the fact that the drug is not approved in 3rd+ line setting.  Patients are being failed by the system – once during COVID and again over inflexible treatment lines. 

We need our MPs to help us to find a new way to approve drugs which have lost their patent.  We have seen many drugs repurposed during the Covid pandemic, so we know it can be done when everyone pulls together.  We would now like generic trastuzumab to be repurposed for later line treatment for HER2+ metastatic breast cancer, as it is in other high income countries.


We need your support to make these desperately needed changes and improve outcomes for breast cancer patients. During COVID we felt ignored, as if our lives didn’t matter.  This is a chance to help improve the excess cancer deaths that will result from the lack of treatment during COVID – don’t let cancer become ‘the other c’.

WE DEMAND CHANGE.


Yours Sincerely,

*optional. Amend as required.

Download Word version of this letter.

Click on these links for more information about contacting your MP, or mySociety for more information on being an active citizen.