If you are reading this blog, then I don't need to remind you that there is no cure for mesothelioma - yet. There are "treatments" - radiotherapy, surgery (lung sparing or radical) and chemotherapy, with the gold standard treatment pemetrexed (aka Alimta) and a platinum-based drug such as cisplatin or carboplatin.
What happens if you have had radiotherapy to the ports/tracts following pleurodesis to drain fluid; the tumour has been resected or is not suitable for resection, and/or you have a had one or more chemo regimes and then the mesothelioma comes back and keeps growing?
Your options close down and you are left with best palliative care, unless there is a clinical trial within traveling distance and you meet the eligibility criteria. Even then, you might receive a placebo rather than the trial drug. This may well help others in future, but it is unlikely to do much to help you if your cancer is growing rapidly and causing pain, "placebo effect" notwithstanding.
Mesothelioma prognosis is bleak (only 1 in 10 people will be alive three years post diagnosis and only 8 out of 100 will survive 5 years later, according to Cancer Research UK statistics). However, our experience suggests there is a growing number of long term survivors with two or more chemo regimes and possibly other forms of treatment under their belts and still a lot zest of life left in them. What options do they have, now they have reached that stage?
This is where the Saatchi Bill (or the Medical Innovation Bill to give it its proper name) could quite literally be a life saver. It is designed to help doctors innovate so they can advance medical science and find new and better treatments and cures for conditions, including cancers.
From the patient's perspective, the Bill would free your doctor to consider new treatments and ideas and allow the patient to demand innovative treatment. Armed with the legislation, a patient will be able to say to his or her doctor: ‘Are you trying everything? Can you do anything differently?’ The doctor will no longer need to say he or she cannot risk trying anything new.
According to the Saatchi Bill website:
"Doctors, patients and judges will have much greater clarity as to what is negligent and dangerous practice by clinicians and what is careful and sensible innovation.
This will have two effects:
1. It will allow good doctors who have the best interests of their patients at heart to deviate away from standard procedures and innovate, safely and with the protection of the law – as long as what they plan to do follows a clear set of actions.
2. It will clearly expose the doctor who acts alone and in a reckless way. Courts will be able to adjudicate on good and bad clinical behavior.
A doctor who follows the correct process will be protected, allowing and encouraging sensible, contained and measured innovation to take place, with patients’ consent.
A doctor who does not go through the correct procedure and acts alone, as a maverick’ can be clearly and easily identified.
Over time, the Bill will, we believe, encourage innovation and in turn support the development of better treatments and cures for all manner of diseases, conditions and cancers. It will foster a spirit of innovation, which will advance medical science and discovery in the interests of patients. At the same time it will act against the maverick and the snake oil salesman.
The Bill will be a catalyst for change."
From the perspective of those with a "rare" cancer, such as mesothelioma, the Bill has a special significance...
"The Bill is for all doctors and all patients, irrespective of the condition or disease they present with. However, rarer conditions are a particular issue for doctors, and one with which the Bill is most likely to help.
Standard procedures are based on what is called ‘Big Data’ and evidence-based medicine – that is, they are designed around what is known to work. At least that is the theory. And it is fine when it comes to common conditions, such as diabetes and broken legs, where there are many patients and where theories have been well tested and proved.
But standard procedures based on rarer conditions, where the data and evidence is patchy is a problem. If there isn’t an evidence base for a disease, it makes innovation difficult – because there are not the numbers of patients available to develop new treatments.It means the standard procedures get repeated, continually fail. And it means, also that less research is carried out because no one wants to spend a billion pounds researching drugs into rare diseases for which the market is small, and scientists often don’t wish to study an area for which there is less funding.
Big diseases tend to carry the day. This relegates the rarer conditions into a scientific and medical backwater with doctors left able only to repeat their failures. This is why we need to free doctors to innovate, safely, with and for patients".
To find out more about the Medical Innovation Bill please visit the Saatchi Bill website by clicking HERE!
Jeremy Hunt, Health Secretary, says he will support the Bill but only if the public support it. Please show your support! The Government consultation is due to start anyway now, but the Saatchi Bill website is collecting comments now and will forward every comment received to the Department of Health.
Post Scripts
- In case you were wondering, the Lord Saatchi who is promoting this Bill is Maurice Saatchi, whose wife Josephine died in 2011 of ovarian cancer...not the Saatchi who used to be married to Nigella Lawson....You can read the background to the Saatchi Bill by clicking HERE!
- Although the Thames river levels are still high, they are stable for now and we are safe and dry for the time being. We are watching the weather forecasts carefully; it's not just the rain that falls here but the rainfall in the areas upstream which will affect us here a few days later. Perhaps I should go to talk to Eric Pickles who is here in Oxford right now as I type...just up the road in fact, on his way to inspect Bullstake Close where we rent a garage which is still under water.....
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