Alena's story

I was diagnosed with primary cancer in 2000 aged 26.

My husband and I married in 2002. After being told we would never have a family following my cancer treatment (a lumpectomy, chemotherapy, radiotherapy and treatment with Tamoxifen and Zoladex), we had a son eight years later. However I then suffered a relapse and was diagnosed with secondary cancer to my spine, my arm and lymph nodes. 

I was utterly devastated at this diagnosis and the bleak prognosis. I had a young son, and the pressure and stress brought on a reactive depression. I had to give up my career in financial services HR; I just felt unable to work and commute, and balance my health need with the demands of a career. 

I had to have my spine and arm rebuilt. I had radiotherapy and underwent oophorectomy, followed by six years on anastrozole and denosumab. During my annual PET CT scan in June this year (2017) it was found there were some hot spots in my abdominal lymph nodes. My treatment regime was changed and I am now on palbociclib and faslodex injections. 

Palbociclib is currently unavailable on the NHS because the company which makes it, Pfizer, are charging such a high price for it. So I am accessing this drug via a private insurance policy. This is currently covered, but the cost will be reflected in my premiums which are already very high. There will come a point when we can no longer afford it. 

I have been living with secondary cancer since 2011, and it has now progressed and this drug is offering me a lifeline I would not have otherwise. Limiting availability of this drug is taking away hope for thousands of women like me. It gives me hope I might see my son get to senior school. It should not be limited only to women that can pay or have insurance. 

It is important we ensure a fair price for essential drugs and that the NHS can offer best practice care to all its patients. Currently patients are being governed by budgets rather than by what is the best drug for them, and that isn't fair or right.

Elizabeth Baines