What if she was mine - House of Lords Feb 24th 2014

What if she was mine?

Team Chloe at the House of Lords 

This is my speech from the House of Lords on Feb 24th 2014.  I spoke in support of the Medical Innovation Bill.  The Bill has been launched by Lord Maurice Saatchi following the death of his beloved wife Josephine Hart.  Lord Saatchi spoke at the event as did Chloe's amazing friend Michael  (Mike)Thomas.  I will ask Mike to post his speech too.  It was an amazing day and there was a feeling that support is growing fast for a whole new approach to the treatment of rarer illnesses; such as the type of cancer that Chloe had.  Very very touching that team Chloe was there for support: Sarah, Chloe, Mike, Rosie, Liam, Sophia and Jael.  That felt so special and so important.

You can listen to the speech here.  Sorry about the quality. Better quality version coming soon.

http://www.youtube.com/watch?v=qqF6ELQPNB0&app=desktop

Today - out there somewhere - a teenage girl is about to hear the worst of news. Whilst her friends fret about which hot boy fancies them; or how popular they are on the latest social media site; this poor girl will be told that she has cancer.  And her world, and that of her family, will fall apart.  

Imagine the unimaginable…    ask yourself what if she was mine?

Seven people between the ages of 13 and 24 are diagnosed with cancer every day in the UK.  Leukaemia is the most common cancer in this age group followed by Central Nervous System tumours.  The cancers that this group tends to get are very different from the type of cancers children or adults get; they are also nearly always the most aggressive.

So, back to our teenage girl.  Today will be the worst day of her life - what lies ahead for her?  If she’s “lucky”, and I use that term ironically of course, she will have Leukaemia.  The treatment will be horrendous; but she’ll have a good chance of survival.  The treatment of leukaemia has been one of the few success stories in the cancer world.  In the 1970’s Leukaemia was a certain death sentence; but now almost 90 per cent of children and young people survive.  

But what if she has one of the other cancers; such as bone cancer or neuroblastoma?  The horrors that lie ahead for her here are beyond your imagination.  Let’s go for bone cancer.  There are two main types that affect teenagers and children: osteosarcoma and Ewing’s Sarcoma.

And the problem with bone cancers is it’s in the bones and - if you’ve ever broken a bone yourself or had any kind of bone issues - you will understand why bone pain is known as the worst of all pains to have.  Relentless and agonising and it’s only the really heavy duty painkillers that have any effect.  

Despite this, most adolescents with bone cancer are dismissed by their GPs as having a variety of other illnesses from growing pains to juvenile arthritis; mis-diagnosis and delayed diagnosis are very very common with teenage cancers.  I guess teenagers just aren’t supposed to get cancer - and GPs are as guilty of that bias as the rest of us.  

Once diagnosed they are given a cocktail of various drugs. Methotrexate, ifosfamide and etoposide- common chemotherapies in bone cancer - are known as the worst available. The drug cocktails they use for bone cancers, and the accompanying  short and long term side effects, wouldn’t be out of place in a script for Silence of the Lambs.  

Complete hair loss at 15 must be so hard.  But believe me that’s the easy part.  Life threatening infections, weeks in isolation in a hospital room with no window, premature and irreversible menopause, heart failure, kidney failure, nerve damage, shingles - that’s a bad one - and to top that all off, the treatment itself may create a secondary cancer.  A doctor once said to me that early 21st century chemotherapy treatments will be regarded by future doctors with the contempt that today’s doctor’s reserve for leeches.  They kill the cancer alright; well in the short-term at least; but they kill a lot more as well.  

And as if they didn’t do enough damage to the body; they kill the spirit too.  

Once again I ask you to imagine what if she was mine?

A bone cancer diagnosis when you’re only 15 isn’t the best of news.  If you’re lucky you’ll avoid amputation of one of your limbs.  But even if you do, the brutal reality is that your chances of survival are pitifully low.  You may naively expect your doctors to roll up their sleeves and assure you that they will throw everything they can at this.  You’ll expect no  stone to be left unturned in trying to find you a cure.  You’ll think any promising new treatments will be made available - if not here, then maybe in the US…...

But this won’t happen!  Your doctors will probably avoid your eye contact, and sometimes even avoid you altogether!  Your doctors will talk about processes and protocols.  They won’t tell about a promising new treatment that was pulled years ago by a pharmaceutical company because kids/young people’s cancers just aren’t commercially viable. The story of a drug, an IGF1 inhibitor called Figitumumab is an especially good example of this disgraceful behaviour.   Look deeper and you’ll find that the treatments they’re proposing for you are over 40 years old; and the protocols are over 15 years old. Few new treatments are available and - even if there are any - you are going to have to be extraordinarily lucky, or have enough energy left and the right high level contacts, to get on to them.  God help you if you are running short on either.

The few clinical trials that bother to include the rarer type of cancers that young people and children get will, almost without exception, have bizarre entry criteria that make no clinical sense whatsoever.  Such as a trial for a cancer that predominantly affects people aged 15 with a lower entry criteria age of 18.  You couldn’t make it up.  

You may well look into your doctors eyes and shout, scream, complain, plead and beg.  He may well be sympathetic; he may well be very kind and really care about your child. But he may well do absolutely nothing and rest wearily back on a tried and tested extremely conservative system that has some pretty strong evidence to support the fact that it is very unlikely to work.

That child was/is mine.  Her name was/is Chloë and she died a year ago today this Friday when she was 18 years and one month old.  She was popular, self assured, charming and very very beautiful both inside and out.  She was blessed in that she was loved so much and her death has left the deepest hole in so many people’s lives.  A few of those people are here today.

Sometimes I dare to imagine the imaginable.  What if six months before Chloë died, in August 2012, when all hope was almost gone, she had been entered into a Special Category that doesn’t exist; yet desperately needs to exist.  A Special Category where all bets were off.  All the rules no longer apply and all the prudent methodologies of the medical profession and indeed the Hippocratic Oath itself need to be swept off the table and left to smash onto the floor.

Once Chloë had only got six months or so left to live, how could any radical potential new treatment have been defined as too risky or too dangerous?  These words - risky, dangerous - are utterly meaningless in this context.    

What if the doctors tried something different; something new, something promising?  Chloë may well have died anyway.  I accept that.  But surely what she would have left behind would have been more clinically valuable to other children to other teenagers - are most precious commodity.  And for us maybe we could have kept a little faith a little longer.

Of course we didn’t want her to suffer more.  Although it’s important to remember that dying of cancer isn’t a walk in the park.  And there is always a risk of making things worse. I know that.  And of course things have to be done with caution and with great care.  But there are drugs coming down the pipeline that are showing huge promise - Professor Andy Pearson at the Royal Marsden refers to now as the golden age of drug development - we desperately wanted hope; Chloë desperately wanted to live.  She didn’t want the medical establishment to give up on her, and neither did we.

She didn’t get those new drugs.  So, the only medical advance resulting from Chloe’s death was re-proving for the zillionthth time that an old protocol with old drugs, doesn’t work. No useful contribution to medical science there, then!

There’s a huge problem treating rarer cancers and rarer illnesses - the very fact they are rare means that there isn’t enough data/enough people to test new treatments.

Even if Chloë had died anyway whilst on some new esoteric untested and ‘risky’ treatment, her death would then have helped advance the science in that new arena.  Her death might then have given a greater survival chance to the next poor girl who gets diagnosed with cancer today.

We desperately need this new Special Category so that doctors can try new radical things when they know the existing drugs don’t work.  We need to support this Medical Innovation Bill.  It is the right thing to do.

I cannot have my dearest wish to have my daughter back with us.  So I’ll go for my second wish to use my family’s story to ensure that the next Chloe who comes along, and so sadly she will, will have a better chance of life.

Thank very much for your time.