Cancer has been around for a very long time and survival rates have improved for some cancers but not others. Why? Why are some cancer treatments improving whilst others are not? Why do the doctors give up on some people?
These are all questions that have been in my mind for the last year. Ever since we came face to face with cancer. I have known angels who have spread their wings, wasted lives who had not responded to the treatments they had been given. I have known doctors who have struggled to come to terms with the fact that they can’t help a patient, doctors who wanted to but were unable. I never understood why.
A few weeks ago I was approached regarding a bill going through the house of lords. The Saatchi bill is about removing some of the fear of litigation to allow doctors to use non-standard practice where standard practice is not working. The bill aims to allow innovation back into medicine. It aims to allow the man or woman who will find the cure to cancer to actually have a chance.
At the time that I agreed to attend, I didn’t think much about it. It sounded interesting and something that I knew I could believe in. It sounded important. I didn’t realise how important it would become to me until yesterday.
I had a very busy week last week and an even busier weekend so apart from a very brief perusal of the bill I hadn’t actually read it all. Yesterday morning saw me sitting on the train reading every word. As I read my heart began to swell and my posture began to change. I really believed in this. Not a little, not a lot but wholeheartedly.
I travelled for over 5 hours for less than one hour in the Houses of Parliament listening to Lord Saatchi, Prof Andy Hall and Debbie Binner. One hour of listening to even more reasons about why this bill is so important. Sat in a room surrounded by other bloggers who have been affected by cancer, ms or other terrible diseases. Knowing we each had a reason to listen and know that we each had a flame in our heart that was ready to roar to life to stop others from going through our pain.
It is hard to explain the bill in simple terms but one way to think about it is that breast cancer used to be treated by removing as much tissue from the front of the body from the shoulders to the ribs as they could without killing the patient. One doctor decided enough was enough, he just removed the lump. He took a chance, he innovated, he succeeded. Now breast cancer is treated by lumpectomy. What if he had not made that decision, what if the fear of litigation held him back. What if he stuck to standard practice.
Elizabeth’s leukaemia is easier to treat than twenty years ago because leukaemia is unfortunately fairly common. This means that clinical trials can be held. Elizabeth isn’t in a trial but because of children before her the doctors know what works, they have a new standard protocol and they follow it. I remember arguing with a doctor who was trying to give Elizabeth some anti-sickness medicine because it was in the protocol. We were lucky, she was never sick but the medicine to stop her from feeling sick made her uncomfortable. He prescribed it anyway because that was standard procedure and he was too scared to deviate from it. I didn’t give her the medicine and eventually, another doctor crossed it off her prescription chart.
Elizabeth is lucky to have Leukaemia, as one of the top four cancers it has had more trials run and the treatments although still barbaric and medieval in some ways are way ahead of those for the rarer cancers.
Our current method to overcome the uncertainty and doubt about cancer treatment is the Randomized Controlled Trial (RCT). A statistically representative sample of 10,000 of the afflicted will take part. The number of corroborative incidents will be noted. The participants will be followed for 10 years to see if they are cured, or if they die; or if they appear to be cured, but then die; or else, if they are neither cured nor die, whether they are later damaged in other ways.
Doctors are excluded from innovation. It has been removed from them and outsourced to the mass clinical trial. The requirements of statistical significance for clinical trials makes them unlikely to be relevant to relatively rare cancers.
If one form of cancer only affects 35 people a year it would take a lot of years before a clinical trial on 10000 could be accumulated. So what happens to those people? No progress is made, treatment doesn’t advance and people die. Lives are wasted. No one wants to try a drug to see if it might help, no one wants to take that risk, no one feels they are able to because the law is holding them back.
Tomorrow morning Michael Ellis MP is taking the Saatchi bill for medical innovation into the house of commons as a 10-minute rule bill. He has 10 minutes to make all of the MP’s side with him. Please help me tonight and tomorrow to show our MPs that the #SaatchiBill is important to us. It is important to the current generation but more importantly, it could cure future generations of horrible diseases like cancer.
We are not working to allow rogue doctors to try any old thing but we are working to put in place a procedure that allows doctors to think beyond the standard and with a multidisciplinary team they can challenge the conventional and try to save lives where they would normally be lost.