Anne's story (UK)
My name is Anne MacLean-Chang and I’m based in Central Scotland. I’m married with two sons and I’m a Just Treatment patient leader.
Previously I worked as a nurse in Oncology then moved into Palliative Care. I first turned from nurse to patient when in 2006 I was diagnosed with Hodgkin's Lymphoma. I had chemo followed by radiotherapy which thankfully put the cancer into remission.
In 2014, I was diagnosed with stage 3 Her2+ breast cancer. At the time my boys were only 3 and 5 years old: I felt fear like I have never felt before. Treatment wasn’t pleasant but was at least available to me at this point in my disease journey.
The cancer came back in spring 2016, and it was recommended that I start treatment on either Kadcyla or Perjeta. However, due to the high price of both drugs, there was no way of accessing either of them on the NHS in Scotland at that time.
By August 2016 I had a CT scan which confirmed that the cancer had metastasised: it was incurable. I vividly remember that consultation and thinking I was destined to die prematurely without access to either drug.
“the delay caused by the drug company’s insistence on a sky high price cost many patients their lives.”
Sadness took hold of me but I decided I had to be proactive for the sake of my kids. With the help of family we set up a fundraising campaign to raise the money that would get me started with Kadcyla. The problem was that Roche, the drug’s manufacturer, were quoting the NHS £90,000 per annum for each patient who needed it. Clearly I had a mountain to climb to reach that target. Incredibly, we raised enough money for me to start the treatment.
At around £3000 per infusion every 3 weeks it was clear that paying for the treatment ourselves would be unsustainable. Regardless, I wanted to give the drug a shot as it had been proven to extend the lives of breast cancer patients like myself quite significantly.
Soon after I learnt that an Individual Patient request for me to access Kadcyla on the NHS had been turned down.
At this point I started campaigning, giving interviews to newspapers about my situation and writing to the First Minister Nicola Sturgeon. My case was presented at Parliament by the opposition the same day I received a phone call from the Health Board reconsidering their decision. I could continue Kadcyla indefinitely via the NHS!
“Drug companies have shown time and again that they will willingly put their profits above our health, and I’m hugely worried by a US trade deal which could allow them much more power in demanding high prices.”
Of course this was great news for me, but it was of no use to other people in a similar position in Scotland. After widespread campaigning, in easter 2017 the Scottish Medicine Consortium (SMC) finally struck a deal with Roche. We were elated that others could finally access Kadcyla! But our joy was tinged with sadness by the knowledge that for some this agreement was too late - the delay caused by the drug company’s insistence on a sky high price cost many patients their lives.
Four years on and I am still responding to Kadcyla - my scans for that last three years have shown no evidence of disease so I’m very thankful that all the campaigning was a success. But my experience has shown me the huge danger that we face when it comes to ensuring access to medicines. Drug companies have shown time and again that they will willingly put their profits above our health, and I’m hugely worried by a US trade deal which could allow them much more power in demanding high prices.
When Kadcyla launched in the US in 2013, the monthly cost was around $9,800 (around £7,500) - much higher than the UK price. Having experienced the stress and anxiety of being forced to fundraise for treatment when faced with a life-threatening illness, my heart goes out to all those patients in the US who are not able to access treatment because of a lack of health insurance. I hope that my own experience will act as a warning to others about the need to protect and strengthen the NHS’ drug pricing controls in a US free trade agreement.