Surviving cancer can frequently feel like you are living with a very fast ticking bomb! Time feels like it is slipping through your fingers and there is just never enough of it. Having said that it also seems that any interventions you need for your disease take far too long. Our perception of time seems to have changed. Since my own diagnosis and life changing experiences, I spend most of my time working in a cancer environment, with either patients or clinicians. Having done this for many years now I find that I am working more frequently in the international arena, which I really enjoy.
I have always insisted that large healthcare organisations including charities and pharma just do not move quickly enough to help people such as myself. Of course there is an issue of safety but I believe that the red tape in place today is a hindrance to good progress for people affected by cancer. Frequently I hear the old chestnut about nobody wanting to find a cure for cancer because a lot of money is earned looking for it. I am certainly not in that camp, but I do believe that things could be a lot more efficient and should move more in relation to the severity of the situation!
More of us are being diagnosed with cancer than ever, yet we are no closer to finding a cure than we were. Technology is helping us make massive steps forward in most areas of our lives but experience is showing me that this sector is still lagging behind most countries in the world. In reality we know that few things are as immediate as ‘Amazon Prime’ but we are dealing with one of the biggest killers of our lifetime and we need things to be much more timely. The Internet is a great ‘equalizer’ for patients, meaning we can communicate much better and put pressure on the powers that be to improve things. But why should we have to?
Recently I have had several conversations about end of life care and accessibility of clinical trials. The current system is extremely complex for both patients and clinicians. Naturally there are many very strict rules concerning this issue but they vary from country to country. New trials are being started so frequently it is almost impossible for any organisation to keep up with what is happening. We have now reached a stage where patients will not accept that there are no options left for them. Particularly when young children are involved. Of course there are trials available, and people are now trawling the Internet for viable options.
Even cost is less of an issue now as people look towards crowdfunding or similar options. This area is now becoming like the ‘wild west’ with everyone looking to offer ‘cures’ for cancer. It is a very challenging situation for everyone, when emotions take over from logic. Personally I would be looking around at what options there are, if I were in that situation. But almost ironically I am also having conversations with international organisations that have knowledge about trials taking place, but can’t find the right fit of patient! Yes the system must always be there to protect the patient, but has the current one become counter productive?
Any good results should be pursued. The phase 3 trial of the drug that saved my life with advanced liver cancer (pembrolizumab) did not show enough significance to allow NICE to authorise its use for HCC. I was lucky to be on the phase 2 trial and I am long term stable. With limited treatment options for liver any potential success should be given a chance. I had to insist and pursue treatment which is difficult when as stage 4 you are often invisible to clinicians.
Hi Denise, as you can see I am of the same mind as you. Well done you for pursuing this treatment. I really do get the patient safety thing but when many people have run out of options I believe that more can be done. I am also stage 4 but there is no chance of me being invisible to my clinicians! I hope you continue with stability, and thanks so much for sharing your own experience.
This is so true xx
Hi Sandra, I do hope all is going well for you. I am frequently thinking of you. After so many years things haven’t changed much and I am hearing more about late stage cancer and treatments. We deserve so much better! XXX
Chris, this is a brilliant portrayal of our UK cancer care. Although we have come some way in talking about cancer, the medical model still neefs to be more social. When this happens, patient experience will be valued enough to give voice to the urgency of both cure but more importantly, prevention as priority funded projects. I love the Time quote which I will always keep close.
Thanks for sharing.
Hi Dianne, thanks so much for your kind words. Things have changed dramatically since Covid has entered our life. Cancer no longer has the importance it did have, but of course it has not disappeared, far from it!
In the near future we must revisit how we deal with it, as for many years, the same methods have of course produced the same results. Being more time conscious will certainly help, and of course more efficient collaboration which we have talked about for so many years!
Maybe we can take back to cancer what we have learned in dealing with cancer. Particularly dispensing with a lot of red tape!
Thank you for your support and the very best to you. Have a safe and peaceful Christmas X
Excellent subject. With my own patient support groups I am each time running against this legal wall put up by the government (FDA and EMEA) which makes it impossible to collaborate with drug companies and investigators. Conversations with them start off enthusiastically as they need us as guinea pigs and are often short of those, but end up with not sharing anything that si not public already, us not even getting a webinar arranged with them.
One can also say that they try to protect their intellectual propery but that need is only caused due to FDA and EMEA regulations making marketing tough for them.
Thanks for sharing your experiences Peter. All those things you mention I see daily, and nobody appears in a hurry to change things. Cancer is a massive business and there is a lot of money to be made by ‘feet dragging.’ We are stuck between the politics of charities, governments and pharma. Unfortunately I can only see change happening by patient pressure. With so many people affected across the world, people are willing to dive into the Internet lottery of treatment. truly shocking! Very best to you my friend.
So glad to share this. My son had stomach cancer three years ago and I scrambled for any information on it here in the US. It is not as common here as it is in Asia and other parts of the world, so the funding is miniscule compared to what other cancers receive. The rate of remission is low for most gastric cancer survivors, so I feel desperate to find answers for my son. I am very fortunate to be part of a small, local non-profit that has joined forces with some other charities who are pooling their donations into research. We have no other choice. Time and money are not on our side.
Thank you so much for sharing your own experience Dee. Unfortunately I am finding these situations more and more. As you say time is not on our side. Whilst of course we need to have certain rules and regulations it seems that only people with cancer and those affected by it understand the realities of time. I am being contacted more frequently by pharma who are running numerous trials around the world and are looking for appropriate patients.I’m feeling I might do more work in this area next year. I wish you well in your own quest for progress.
Crowdfunding should never have to be an option in cancer care and I don’t believe cancer leadership is weak at all, particularly in GM where I think it’s pretty amazing
Crowdfunding has thrown a very different ingredient into the mix. My experience of cancer leadership is different to yours I guess Tony. So pleased to hear your experiences are positive.
Chris, you touch on a very interesting dynamic and potential conflict of interests when you mention ‘brand’. More and more charities are run like businesses, and of course businesses rely on customers. If a charity working in the healthcare sector starts to think it is competing for the same customer as another charity we have an ethical problem. Then to make things even more complex if a charity’s leadership starts to develop a mindset that their employees salaries and the charities existence depends on its customers, then I would be concerned that this could impact on what is best for the patient.
Hi Neil,
Obviously I run a charity of my own, and also have vast experience of cancer charities throughout the UK. Unfortunately, the giants at the top of the tree are doing their best to bombard the public with self proclaiming advertising via television and expensive national advertising. This is strangling many of the smaller ones who are doing work that the big boys can’t do. Much as there is better collaboration happening now, the facts are that each organisation needs to increase it’s revenue. I question the value for money and real impact for the people who need help. There very definitely is a conflict of interest in certain cases.
I feel the sector could benefit from some sort of ‘body’/alliance that could bring together all the various cancer charities to look at aligning their work to prevent too much overlap etc and also to prevent the public from being confused.