A plea to the Breast Cancer Ambassadors re Kadcyla & other drugs

Dear Breast Cancer Ambassador,

As a secondary breast cancer advocacy group we are asking for your help as Breast Cancer Ambassador.  The process to approve and fund new drugs via the NHS for incurable breast cancer is not fit for purpose.

The latest drug about to be lost to NHS patients is Kadcyla.  The drug, subject of a campaign by Breast Cancer Now, offers life extending benefits to those living with incurable (secondary) breast cancer.

Over 115,000 people signed the charity’s petition to keep the drug.  There has even been a recent parliamentary debate on the “Keep Kadcyla” campaign.

Although we realise you were not able to attend the debate itself on this occasion, could we please ask you at this stage to commend on the below

Secondary Breast Cancer: Why drugs like Kadcyla are important

Patients diagnosed with secondary breast cancer are given a median survival rate of just three years.  Secondary breast cancer is a difficult disease to manage as inevitably treatments fail one after another.  Added to this, there are few effective drugs available to NHS patients to control the spread of the disease.  When you consider that 12,000 die annually of secondary breast cancer, losing drugs like Kadcyla are a blow.

Kadcyla isn’t an isolated incident.  The drug Tykerb, against which Kadcyla was tested in a trial, had been withdrawn.  This further narrows and restricts treatment options.

We need your help in campaigning for NICE and pharmaceutical companies to find some way forward on pricing.

There are many young people living with incurable breast cancer.  They and we depend on the NHS, and we need to do everything possible help reduce the loss of people with secondary breast cancer.

NICE drug approval process

Kadcyla is not the only drug that won’t be available to NHS patients.  NICE has just rejected another breast cancer drug – called Ibrance – also for price reasons. This is an important new drug that has been promoted as a game changer.  It is the only drug of its kind, and it makes precision medicine a reality.

Repurposing drugs for cancer risk reduction: reducing the incidence of secondary breast cancer.

There are parallel difficulties with existing drugs where research has shown to reduce the spread of breast cancer.  Drugs used for osteoporosis have been found to reduce the spread of breast cancer to the bones in post-menopausal women.  The drugs – bisphosphonates – are a cheap yet effective treatment.  Yet Breast Cancer Now point out some three out of four oncologists can’t prescribe these drugs because they are mandated only for osteoporosis and NHS funding responsibility is confused and unclear.  This leaves many without access to drugs that could increase their chances of survival.

NICE drug approval process

The process used to evaluate whether new drugs should be available on the NHS is not fit for purpose.  METUPUK is calling for an urgent review of the system to approve access to life extending drugs.

One significant problem we believe contributes to flawed decisions on new cancer drugs is the lack of robust data and statistics on secondary breast cancer.  We don’t know exactly how many people could be helped with these drugs.  This is unacceptable.

There needs to be an urgent review of this situation to collect information on those living with secondary breast cancer and to make sure they receive the appropriate treatment.

Another major charity Breast Cancer Care has been campaigning for over a year on this but there is still no robust information collecting system in place.

New cancer drugs fail NICE criteria with almost predictable certainty.  We want an independent review of the drug approval process to create a level playing field for ALL living with incurable cancer.

We would also like answers on the following:

  1. We are aware of the Health Services (cost of drugs) bill. When the bill will gain Royal Assent, and how it will address the issue of drug pricing?
  2. Does the pharmaceutical industry benefit from government funded cancer research to develop new drugs which NHS patients are then denied? If so what can be done to rectify this?
  3. Existing and cost-effective drugs have been shown to be effective in reducing the risk of recurrence and possibly the spread of incurable cancer. Why is there a failure to repurpose them quickly?
  4. Given the problems outlined above, how does the cancer strategy and the aims of increasing cancer survival actually apply to people with incurable cancer?

We look forward to hearing your comments.

Yours faithfully


Patient Advocacy Group for Secondary Breast Cancer

If you wish to see if your MP is a Breast Cancer Ambassdor please search the list here www.breastcancernow.org./get-involved/campaign-with-us/is-my-mp-a-breast-cancer-ambassador

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