If you persevere, who knows what you’ll achieve.
Emma is a patient leader with Just Treatment, based in London.
Just Treatment patient leader
When I first joined Just Treatment and learned more about why access to medication had become such a problem for patients in the UK, it was immediately clear to me that this was a political issue. As a constituent member of Hayes and Harlington, I knew that my local MP was John Mc Donnell and I wanted to talk to him about this problem. I sent tweets and emails asking for information about how we could meet.
A while later, I received an email back and an invitation to have a cup of tea at the local Labour party offices. Having put the time and effort into getting the meeting, I realised that I had no idea what I wanted to say and whether I would be able to articulate anything coherently! For moral support I brought my friend Diarmaid along. I knew he had worked in the field of access to medicines for many years and thought that he would probably be able to speak coherently about TRIPs flexibilities and de-linkage in his sleep.
I am a stage four breast cancer patient and will always be living with this disease, fearful that the next medication that I need will not be approved by NICE (the National Institute for Health and Care Excellence) for availability on the NHS. John was very receptive to what we had to say. He listened carefully and was sympathetic to my experience of the problem of how high drug prices are preventing patients from accessing medicines.
John invited me to share my concerns with other members of the Labour party. With the support of many stories from other patients who have been unable to access necessary treatment, we proved that this issue needs addressing if we are going to protect the future of our NHS. Just over a year later, with the help of a team of expert advisors from around the world, the Labour party last week announced that they have now developed policies to address this issue!
Labour’s announcement was of course influenced by many factors, but I feel confident that my meeting back in 2018 played a role. Their announcement is a huge breakthrough, and I hope my story shows just how important it is for every single one of us to be involved in politics. It’s more important than ever that people keep campaigning on access to medicines, because now we need other parties to understand that not only does an alternative R&D model make good business sense, it would ensure that people could access the drugs they need.
Getting into political campaigning wasn’t an easy path for me - in 2010 I moved onto a Narrowboat and began to “continuously cruise”, which meant that I did not have a fixed address to call my own. This presented certain difficulties in terms of engaging with normal society. If people were discussing every-day household issues around the table, I felt very alienated because I had taken quite a different path. Remaining registered at my previous GP surgery was problematic, and it was harder for me to vote because I did not have my own residential postcode.
Some time after I was diagnosed with secondary metastatic breast cancer, my boyfriend and I found a permanent mooring for our boat home. With the postcode came council tax bills (on top of the license fee we already pay), and we keenly put our names on the electoral register to make sure that we could vote. Both myself and my now husband are curious about politics and issues such as medicines and Brexit are robustly and critically contemplated around our dinner table and when we enjoy coffee together.
I wanted to share my story so that people know that they can and should be talking to their MP, and that it’s worth persevering, even when seemingly multiple barriers stand in your way. Sometimes it’s hard to see how our individual actions can have an impact, and often it’s not until later that we understand the role we’ve played. But as my experience shows, if you’re prepared to take a stand for what you believe in, then the possibilities can be huge.