In a campaigning mood at the moment. So shocked by this story. Please, dear readers, take a look at this. Andi is beautiful, fearless and spirited - she's 37 and has ovarian cancer. She has been denied the same drug that Chloe was denied - Biomarin's PARPi Inhibitor. The evidence for this drug is far stronger for ovarian cancer than it is for Ewing's - unbelievable that she can't get it. Imagine if this was you, your sister, your daughter, your friend!!
On the site you will also see the appalling attitude of Biomarin's CEO. PR disaster or what! So sadly this is an attitude I came across time and again. Almost an attitude of how can we block the patient, ordinary people don't know anything, they just need to accept what's going on. Patients, the plebs that they are, seem to be quite annoying for the medical establishment to deal with.
Well there's a lot of us plebs, or "spoilt brats" as Biomarin may like to refer to them as, who are going to continue to be very annoying. And thanks to our wonderful internet we are joining forces across the World.
I know my little blog is read across the World in countries such as Vietnam, Poland and India. So pleased. We can join together and we can help each other. Some countries, of course, have it far worse than we do. An Albanian friend is still paying back debts incurred by all kinds of treatments that he opted for in a desperate bid to save his young son from cancer. His son died. God, life is really c**p sometimes.
But I think us "lucky" ones Europe/US need to lead from the front and shine the spotlight of publicity in what is going on the worldwide medical establishment. For example, did you know that Gleevec, a drug that has helped to transform survival rates in childhood Leukaemia, took 10 years to develop as the drug companies were arguing about the typeface of the logo. Wonder how many children died in that ten year period - guess that's a stat that we won't see published any time soon.
Andi's Army got in touch with me through my blog and so happy to help in any way that I can. Could be that the Huffington Post is going to cover Chloe's story to support Andi's. Can't see how anybody can resist such a beautiful pair; both denied the same drug.
I totally agree that we need to be extremely careful in trialling new medicines and that maverick doctors/researchers need very strict guidelines to work within. It's true the side effects of some drugs can be far worse than the illness itself. I've seen evidence of that.
BUT chemotherapy and radiotherapy are not a walk in the park and the list of side effects/late effects do not make easy reading - including the very real risk of a second cancer caused by the treatment itself. But the pendulum has swung too far the other way and it seems that we are left with a broken system where everybody is terrified to innovate and try something different - hence they fall back on the safety of tried and tested protocols. In many instances these protocols offer really strong clinical evidence - just what doctors want. However, the evidence is often "this treatment will be totally awful and is highly unlikely to work. But it's the best we've got". Great !
Treatments and outcomes for most life threatening illnesses have stalled. I'm a passionate supporter of Maurice Saatchi's Medical Innovation Bill about to get its second reading in Parliament. A little plea to all my UK readers please write to your MP and urge him/her to support it. The Bill will not provide the magic solution; but it will help to create a better system where doctors/researchers feel more able to innovate. And this is critical.
Thoughts and prayers to the family of the very brave campaigner Les Halpin who died last week. His Access to Medicine Campaign http://www.accesstomedicine.co.uk/the-campaign/les-halpin is highlighting very similar issues. Les had the horrendous Motor Neurone Disease and spent the last few years of his life campaigning for better treatments/access and choice for those with terminal illnesses. A very courageous man. So hope his campaign continues.