By Simon Davies, Executive Director Teen Cancer America and former CEO of Teenage Cancer Trust UK
My support for the Medical Innovation Bill began at its inception when I was CEO of Teenage Cancer Trust and Chairman of Cancer 52 in the UK in 2013.
Now I am Executive Director of Teen Cancer America and still support it because it has the potential for global impact that will benefit patients here in America and around the world. There is no doubt in my mind that it’s ripple (or wave) effect will be of transatlantic proportions.
The cancers that affect young people are rare and difficult to treat. Research into rare cancers has lagged far behind due to lack of investment and innovation. For teenagers they are further discriminated against because regulatory systems designed to protect small children prevent their access to adult clinical trials when there is no medical reason why they could not benefit.
So one of society’s most precious commodities has least access to life saving treatments. No surprise then, that survival in some of the rare cancers they get is still shockingly poor and has seen little improvement in over 30 years.
The Saatchi Bill will at least swing the pendulum back in the direction of Doctor/patient partnerships. Doctors facing few options for desperate and dying patients will, with their consent and collective peer approval, be able to try out new therapies without fear of criticism or legal challenge.
Patients will have more influence, as they always should have done and we will learn more with every new trial.
I’m pleased to see the Bill’s latest drafts with some wrinkles removed. Safeguards are in place to protect against Burzynski style exploitation and there will be transparent collection of outcome data for all to see and learn from.
There may be commercial challenges for industry who could lose some control but it’s no bad thing and at least it will be a level playing field. This is a moment in time for them to realize that this is just the right thing to do.
Like the minimum wage or disability rights, there are times when the benefit to society outweighs commercial gain or governmental control and we just need to improve our human profile one more notch. So put down the rattling sabers and let this piece of medical history take its course.
The people have spoken, the consultation consensus was overwhelmingly in support and politicians must now fulfill their obligation to represent their constituents wishes in the best interests of us all.
When all is said and done, the one unifying fact is that regardless of any other status or position we might hold, every one of us is a patient and could benefit from this Bill.
This one is for you, your family and your friends. Don’t let us down. Support it.