Just Treatment leader, South Wales
On the 23rd June 2016 (EU Referendum day), my partner and I were given news that would change our lives forever: my breast cancer had spread to my liver and lungs. In the ten months preceding this, I had discovered I was pregnant, been diagnosed with breast cancer, been through chemotherapy (during pregnancy), given birth and undergone a mastectomy.
Very soon after receiving this news, we were told that two cancer drugs which could extend my life were not routinely available on the NHS in Wales. We had a two month old daughter and a three year old son.
Let me ask you this question: what would you do?
We felt we had no option. We had to raise the money to pay for the drugs ourselves.
Fortunately, my first line treatment (Herceptin) was provided by the NHS in Wales. The next two drugs I would need were Perjeta (Pertuzumab) and Kadcyla (TDM1) and they would cost £90,000 and £60,000 per year, respectively. We needed to raise the funds before my first line treatment stopped working.
We launched ‘Curly Car’s Cancer Fund’ in September 2016 and immediately received a massive amount of interest and support. Family, friends, neighbours, colleagues, acquaintances, even total strangers - everyone wanted to help. We were contacted by local and national media, we did interviews for newspapers, magazines, radio and TV. There was a huge number and range of fundraising events which were enthusiastically supported by our wider community. It was completely overwhelming.
Astonishingly, we hit our £150,000 target in just nine months. The fundraising continues and, to date, we have raised over £190,000. As yet, we haven’t spent a single penny of this, as my first line treatment is still working. Also, since we launched the fund, Kadcyla has been approved for routine use on the NHS in Wales.
On the surface, this would seem like a positive outcome. However, what I failed to mention is the amount of additional time, energy and stress this funding situation caused. At a time when my family and I were trying to come to terms with my diagnosis, we were forced to focus our efforts on raising funds to ensure I could access necessary drugs.
Initially, the support the fund received felt extremely positive for us, but as it grew, it became more and more difficult to manage. It took up time and energy I should have been devoting to my children and it caused me a lot of stress, which is particularly detrimental when you have a cancer diagnosis. There were days when I felt like closing the fund and asking everyone to stop. It all became too much.
This experience is the reason I am keen to be involved with Just Treatment. No one should have to go through this when they are dealing with the daily challenges of a devastating medical diagnosis.
Pharmaceutical companies are profiting from our misfortune; it’s unfair, immoral and most importantly, unnecessary. It is possible for these drugs to be developed, produced, trialled and approved at a cost which would be far more affordable, and still allow pharmaceutical companies to make a substantial profit.
Our NHS is on its knees, due - in part - to chronic underfunding, but also to the overpricing of drugs. Our government is allowing this to happen by granting patents that give drug companies monopolies which allow them to charge whatever they like. This cannot be allowed to continue and while I am still here and still well, I intend to do everything I can to end this situation.