I attended a meeting earlier this week, with Lord Saatchi, Professor Andy Hall and Debbie Binner at the Houses of Parliament to find out more about the Medical Innovation Bill. I won’t lie to you, the combination of cancer, politics, science and medicine left me mentally and emotionally exhausted. But having had chance to process it, it really is simple.
The Medical Innovation Bill aims to give doctors, patients and judges greater clarity as to what is negligent and dangerous practice by clinicians and what is careful and sensible innovation.
Doctors already present their ideas to Multi Disciplinary Teams to agree a course of treatment, so the Medical Innovation Bill isn’t inflicting new processes on the NHS, the difference is it will give doctors proposing new forms of treatment legal protection from being sued – if, and only if they go through the MDT to get agreement, AND get consent from the patient.
Patients will always have the option of either the innovative or the standard treatment and will have these fully explained.
It is important to say that the bill is not cancer specific and can be applied to many illnesses, but many of the examples cited here are cancer specific.
Why is it needed?
In many cases doctors are required to stick to a well trodden path when treating patients because deviation from this path could result in them being found guilty in a medical legal case. Lord Saatchi, whose wife Joesphine Hart died two years ago from ovarian cancer, argued the ‘the definition of negligence is deviation’. The law is stacked against the doctor who tries something new.
A doctor who, knowing his patient has little chance of survival, tries something new, even with the patient’s permission, has a far greater chance of losing a legal battle if the patient or their family decides to sue.
However, many cancer drugs and surgical procedures are 40 years old. For some cancers the treatments are brutal, degrading and medieval; amputations, drugs that are the by product of chemical weapon research. Saatchi described his wife’s treatment, for ovarian cancer, as the ‘endless repetition of a failed experiment’. For many cancers, particularly rarer ones, there are no cures.
A medics view
Professor Andy Hall a specialist in blood cancer explained how over his lifelong career in the field and despite public and charity investment, he still feels the results he hoped to see for adult leukaemia haven’t yet been yielded. Cancer is very difficult to treat, but there is more to it than this. Hall gave the example of childhood leukaemia, in the 1950s treatment was criticised, it was deemed incurable, people believed any doctor attempting to treat it should be locked up. Now, we have a 90% survival rate. Hall believes giving doctors the ability to innovate is essential if we are to make faster progress.
I look back at my mother’s brain cancer treatment, a leading brain surgeon flew into the UK, she removed first one, and then a second, grade 4 tumour that would otherwise have killed her in weeks, chemotherapy and radiotherapy held off the stray cells that remained. She gained two and a half years, we had time to prepare our goodbyes, she met my son. I cannot fault the NHS, the way she was treated. The time we gained was precious. Compared to the sudden decline of my Grandfather nearly 40 years earlier, this seemed like huge progress to my family.
But cutting someone’s head open, delving into their brain, repeated blood transfusions for anaemia, the horrific and never ending side effects of surgery, chemo and radiotherapy, they are gruesome and relentless processes. Processes to elongate a patient’s life, but at great personal cost. A grade four brain cancer is still a death sentence. Surely we should be able to move faster?
Researchers have developed a virus, with side effects like the common cold which can fight some cancers. Other researchers believe the answer is in genetics, that we will be able to predict who will respond best to which treatment. There are countless promising research projects and new medical drugs that are abandoned, despite success.
Debbie Binner’s daughter Chloe had a rare bone cancer, only 35 people a year are diagnosed with it in the UK. As a journalist she spent nights on the internet researching options, she eventually found a drug that had been withdrawn, it didn’t work for lung cancer, but it did for bone cancers, but it hadn’t been ‘commercially viable’ to invest in a cancer with so few patients, so it wasn’t made available.
Debbie fought and battled to get the drug for her daughter, she was told she was ‘lucky to get it’, an attitude she resented. Sadly, Chloe didn’t respond, I can’t imagine the pain of that struggle for Debbie. But, others have since responded to the drug.
How can innovation change this situation?
Of course there are arguments that money is the issue here, not the law, but that’s not completely true. This convinced me:
In June 2013 key figures from the pharmaceutical, medical, ethical and insurance communities came together to discuss the current barriers that hold back the development and prescription of medical drugs. There is evidence in the paper to suggest ‘creating an environment where doctors and developers could use more drugs across a range of conditions could stimulate declining development in new medicines. This in turn could encourage innovation in treatments for less common conditions.’
The Medical Innovation Bill in itself is simple, the medical profession is self regulating, it is innovative, but the fear of litigation holds doctors back from making progress. The Bill seeks to give judges, patients and doctors legal clarity, security and the the ability to embrace innovation.
If you would like to support innovation, you can read more below and a simple two minute way to help the bill is to email or write to your MP and simply ask them to support the Medical Innovation Bill. Include your name, address and phone number in your email.
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