Jo's story

Jo pic.jpg



Just Treatment patient leader, Manchester

Jo is the founder of After Breast Cancer Diagnosis and METUPUK.

I was diagnosed aged 38 with primary breast cancer in 2007 whilst on maternity leave with my 5 month old and a 2.5 year old. Only a year previous to my diagnosis the breast cancer drug Herceptin was approved in the UK for NHS use. It was my first experience of hearing about a "postcode lottery". 
Seven years later I found a lump in my neck and was told that I also had two small spots in my sternum. I was hoping it was only in my neck and maybe a local recurrence. No such luck. I was devastated to receive a diagnosis of incurable (but treatable) secondary breast cancer. 
I decided to change oncologist as mine at the time was unable to access the Cancer Drugs Fund (a fund which offers treatment with drugs not routinely available on the NHS). Changing oncologist meant I was able to access the drugs pertuzumab and Herceptin. 
A year later I had all the left neck nodes removed and also found that I had secondary breast cancer in the humerus (for which I had a course of radiotherapy). Another year later, I had most of my sternum removed due to the secondary breast cancer there.  
I have been on pertuzumab and Herceptin for the last 4 years with treatment every 3 weeks. I strongly believe that these drugs have extended my life. I was lucky to choose an oncologist who had the ability to access these drugs. It is unacceptable that I can access these drugs and other people cannot. In Scotland and Wales the situation again is different and many people have no access. Thankfully pertuzumab has now been given funding via the NHS so other patients in England and Wales can, or will soon, have it - although it has not yet been approved in Scotland. 
I wanted to get involved with Just Treatment because of the work I’m already doing in this area through my website After Breast Cancer Diagnosis. Off the back of my advocacy work I also created METUPUK (the UK arm of METUP USA), one aim of which is to challenge the price of drugs so patients gain better access. 
We should not have to fight for the right to access treatments that can extend our lives. We have a system where pharmaceutical companies are dictating pricing and profiting hugely from patients. In the case of pertuzumab, which is still unavailable in Scotland due to the high price, the drug company’s patent will not expire until 2027! 
We need this patent system to be reviewed, more research applied to secondary breast cancer, as well as speeding up the drugs approval system. Not enough drugs for secondary breast cancer have been released over the past ten years because the review system is not fit for purpose. Everything takes too long and patients have the dire statistic of living an average of 3 years after diagnosis. We need to help patients live longer, that's what the NHS is suppose to do. This shouldn't take months and years to resolve. The urgency is critical. 
I joined Just Treatment to help support the campaign for palbociclib which succeeded in getting 20,000 signatures for approval for secondary breast cancer patients in first line treatment. Through Just Treatment I want to put pressure on the pharmaceutical companies, the NHS, NICE and the government to make changes to give patients better outcomes. We need our lives extending not being cut short due to this inability to access drugs.
I am also passionate about improving the huge lack of data and statistics collection for any secondary cancer patient. I have been heavily involved in this for breast cancer and moved the issue forward greatly after discussing it with my MP and taking it to parliament. How can the NHS have necessary services in place for patients if they don't know how many patients they are dealing with? It's beyond me. I have influenced change in this area and also taken the issue to the Greater Manchester Breast Pathway Board where I attend as a patient representative. 
As you can see we need patients to join in to help campaign, highlighting these problems to put pressure on to make change. Please join Just Treatment. Your support is very much needed.

Elizabeth Baines