This post follows on from last weeks about the ‘Cancer Conspiracy,’ which was one of the most read in recent months. The more I look into the reasons for the current silence around cancer, the more I see more questions than answers! I see no reasons at all why things cannot improve in the sector even without the vast increase in money which we will need to see.
Thankfully, solving the cancer conundrum is not a business as such. Otherwise it would have been closed down many years ago! An industry that is sustained by billions of dollars across the globe employing millions of people in every sector of it. Year after year, after year. Making very little progress for many tumour types. We have even managed to put man on the moon in my lifetime. I don’t believe that progress is even keeping up with the incredible advances in technology in recent years!
Yes, we are looking into genetics, and are making breakthroughs with immunotherapies. But shouldn’t we expect more for the investment involved? Even now, we still don’t know who is responsible for what. NHS, charities and pharmaceuticals all doing a bit, ultimately controlled by Government. Very little transparency for the patients using the service.
These are all basics for any business. But not cancer of course. I have been involved directly for 14 years now. Working to improve things for 10, but I am at a place of despair. Seeing old failed ideas being introduced as innovation! Of course, many older patients not being around to notice. Having died, whilst all the organisations involved, continue to sit on their hands.
Obviously I have no clinical or scientific experience, but I do know about running large business. Everything I see in this area is against what I know to be successful. It’s much too fragmented to make any impact. Even today, one of the biggest issues patients complain about is poor communication. Something I know to be true from just my personal experience. How can this still be a major barrier to progress? Most obstacles are not even investment related, but more about poor/weak leadership. With a total lack of urgency.
We haven’t even organised basics such as capturing data. Who does it, who owns it and who ultimately is in charge of it. Therefore we don’t know the full extent of the problem. If that is true how can we set about solving it? Then imagine that every country has it’s own ‘system.’ None of this part is even about money. So many people involved in the cancer process yet we can’t even get the basics right. Why has this been allowed to continue for so long?
Of course we know that cancer is one of the most challenging things we have ever faced. Yet despite so much resource being thrown at it, is affecting more people today than 10 years ago. 50% of the nation will be directly impacted, meaning that every family will be touched. Why are we not taking this seriously? One of the biggest killers in our lifetime, with more deaths than covid in a year. This is not just starting, it has been coming for many years.
If we continue on this path, we will be living on the moon, before the challenges of cancer are remotely close to being solved. I truly believe that in the longer term it will be cheaper and more effective to focus on the cause rather than treatment. This challenge is not specifically about money, but entire mankind. Will the example of what we did globally regarding a vaccine be taken forward with cancer? Personally I don’t think that will happen. My opinion is, that was a once in a life-time effort. Then we will all go back to doing our own thing.
With the rate of new technology increasing daily we should be in the best place we have ever been. The only thing that is stopping us is a surprising lack of desire from the powers that be. Surely even the financial cost of dealing with everyone affected by cancer should be an incentive! But it doesn’t seem to be. It looks like we have accepted that as the price to be paid to keep the cancer community quiet. Go through the motions, so people think things are progressing.
Only the patients will complain, as everyone else is earning a living. After a time the patients will become tired of complaining and just accept the reality. If that is the plan, I must admit that I am almost at that stage. I feel that all my efforts in the last 10 years have been for nothing. Reality tells me we have made very little impact in that time. Sure, we are making a lot more noise about the disease than we ever did, but that must lead to action, and it isn’t!
I’m not proud about leaving cancer in this mess, as yet another problem my children and grandchildren must deal with. But I hope they know I’m doing my best. Not every problem has a solution. Sometimes you must conclude that even your best isn’t good enough. Is cancer one of those problems?
As always, these are my personal opinions based on my own experiences. Please feel free to share your own below.
Thanks Chris; so true. Like you, I love helping people especially when you know that better outcomes could be achieved; if only those in high places listened. 5 yrs on since b/cancer, lots of awareness/education shared to try to catch cancer early/save lives. At times, exhausting
You do incredible work yourself Cheryl and thanks so much for your support. It is incredibly exhausting, whilst also speaking to people fining their own experiences so challenging. Where are the big orgs that want our money and tell us they are there for us?
Hi Chris, sadly Larry Kramer’s speech is indeed what’s happening with cancer today. The big orgs have no reason to do things differently, they have an ongoing stream of new patients & their loved ones to be “there” for. If the many small orgs – often supporting the same cancers – were to join forces they’d maybe stand more chance against the big orgs. I believe things could change for the better with greater collaboration instead of fragmentation, competition, division & greed. Your work fosters collaboration – #TeamChris all the way. Deb X
Indeed it is Deb, just a few changes required and it sums up everything about this disease! Economically no organisation has any reason to change. Who is in charge of what? Where does the money go? Who knows, and that can’t be right!
We have seen some collaboration from charities in recent years but most often, forced by economic situations! I’m sure we will see more in the coming years, as the donations start to dry up too. This sector is absolutely vast in terms of finance, but has been too self-serving for so long now. They need holding to account.
Thank you for your kind words and ongoing support, it means a lot. Big love, Chris
Chris you have done more than anyone l know to give us confidence with having cancer, at least people don’t call it the big C anymore. You have helped me and my family down the years to cope, l for one would say THANK YOU time and time again for your support. Especially as l have just “lost” my lovely husband to prostate cancer. Love to you and your family for you being you. God bless
Hi Georgine. Cancer certainly hasn’t been kind to you and your family, and so sorry to hear your latest news. Sometimes it can feel like a lonely place when speaking out about the inequalities of cancer but people like you remind me why I do it. Thank you for your kindness to me and my family over the years too. It means a lot, Chris XXX
Chris you and I have both vehemently agreed.
We are getting burned out of saying the same things over and over again like many cancer change agents we become dismayed, rundown, cynical. But with hope as our common ground perhaps one day it won’t be so f-Ing hard to get preventative tests with new equipment or access to clinical trials that are impossible to find patients because it’s financially budendsome to us. Study’s come and go with similar success and the mortality rates only decreased by single digits in the low 10-20% successes. There is less interest in exceptional responders than ever.
There’s no single cure. We know the facts remain cancer is a pandemic with mbc alone talking one woman’s life per minute of svery day. Individuals sit and wring their hands in worry if they can afford a copay or to pay the bills. And the chance of their cancer being caused by environmental factors is likely to be the case yet a blind eye is turned and it’s chalked up to bad luck. A roll of the dice.
We sure know how to cause cancer but the changes and the money it will take to cure it are not available and I know I won’t see it in my shortened life.
Thank you for posting keep telling the truth. I’ll be here as long as I can echoing ion this side of the Atlantic.
Yes we do certainly agree, and it is a delight to be working with you and so many others in this incredible cancer community. I really wish I could disagree with something you have written here, but I can’t. It certainly can be disheartening at times.
My motivation is firstly my grandchildren! I really must do the best I can to improve healthcare for their generation. Secondly I intend to make life as uncomfortable as I can for all the fat cats who are in a position to speak out but don’t. All those still earning a fortune from the status quo, politicians to large charity chiefs and big pharma. It has always been a challenging area but now it is becoming an international scandal.
Thank you for your friendship and support Ilene, it means a lot.
Very best to you with your personal challenges too.
Big love, Chris