Sunday 28 April 2013

the media

Chloe was judged "too young" to get through the clinical trial door

The media is getting very interested in Chloe's story.  I was interviewed live on Sky TV on Saturday morning and this is the online story they included.

Here's why the media is interested in our story:

- Survival rates for the kind of cancer Chloe had haven't shifted in some 30 years.  If you compare this to what has happened in terms of technological advancements, you can see that innovation is sadly lacking in this area.  Astounding when you think that these kind of rarer cancers tend to strike teenagers more than any other group.  Teenagers with the world laid out at their feet; teenagers who haven't had a chance to marry, work, have children and make all the other major life decisions that us humans enjoy; teenagers who are so very very important.

- Chloe was treated on an outdated protocol set up in 1999.  This protocol was described as a "clinical trial" - even though it was 14 years old!  Hardly cutting edge.  Again think what has happened in the past 14 years.  Medicine in this area moves very very slowly and in the meantime people like my daughter die.  And nobody seems to do anything about it.

- Chloe was blocked from entering a clinical trial for a new investigational drug when she was 17 and nine months.  The entry criteria for the trial was 18.  There was no clinical reason why the entry criteria was 18 (at nine stone Chloe was an adult weight).  At this point we had run out of all other options and we were told this drug "may" work.  We kicked, screamed and begged to be allowed on this trial.  Doctors agreed we should have been allowed on it, Simon Davis CEO of the Teenage Cancer Trust intervened personally and we had help from out local GP.  The Royal Marsden wanted Chloe to go on the trial; so did University College London Hospital.

But the door remained tightly closed and Chloe was not allowed on the trial.  Chloe died and so will other young people who have the same illness if we don't do something quickly about changing the current entrenched status quo.

The trauma of fighting this obstacle added to an already agonising situation.  It was unbelievable and it was wrong.

Fortunately the landscape seems to be shifting.  It seems that we aren't the only ones left incredulous that in this day and age better and more modern treatments aren't available - especially for somebody so young. There are two initiatives going through parliament at the moment to suggest ways for speeding up innovation for rarer illnesses and for removing the ridiculous bureaucratic obstacles that stop people like my beautiful daughter trying new drugs that are showing promise:  the Les Halpin initiative and another by Maurice Saatchi. Lots on the internet about both of these initiatives.

Chloe's story is being used as the human face of what happens when innovation is thwarted and access blocked.  It is a broken system and needs changing.  Cancer affects one in three of us and over 50 per cent of people who get cancer get a rarer cancer.  Of the people that die of cancer over 50 per cent die of a rare cancer.  A rarer cancer could affect any one of us or one of our loved ones at any time.

This is a debate that we all have a potential stake in.

It's a bloody horrible illness: cancer.  I've had quite a lot to do with it.  Among the people I have loved most in the world, two of them have died young and not old of cancer.  My beautiful Chloe, aged 18, and my wonderful Mother, aged 60.

My Mother's death left me bereft.  I was so close to her and it's tough loosing your Mum when you are just 20.  But looking back she was 60.  My brother, sister and I were old enough to look after ourselves and she'd lived a life.  It was so sad for us ; but not really a tragedy.

Conversely, I think it would be difficult to argue that my Chloe's death was not a tragedy.  She was 15 when she got ill.  Completely out of the blue she had a pain in her leg.  "Growing pains" the doctor said time and again.  The pains started in September 2009; the cancer was finally diagnosed in February 2010.  Almost six months for the rare, aggressive cancer to take hold in her beautiful young body.

Late diagnosis is very common in children's and young people's cancer.  Lot more education needed here! And for the record consistent pain, especially at night, is NOT normal in children and young people.  Whereas older people suffer from aches and pains - consistent pain in a young person needs investigating.  But please remember the kind of cancer Chloe had is thankfully very rare!

Cancer in teenagers and children is as bad as it gets.  I've seen so much of it these past few years.  Little kiddies being sedated for radiotherapy;  teenagers shut in hospital wards day after day whilst the rest of their world parties (courtesy of Facebook they can add to their torment by watching a blow by blow account), wigs and baldness, bone marrow transplants, sickness from chemotherapy and severe weight loss.  And some of the other things I don't even want to remember of mention.

 It really is as bad as it gets.

Just for now I'm in campaigning mode which dulls the pain ever so slightly.  In one way it's cathartic and it also allows me to scream as loudly as I can that my child really mattered;  as much as every other child.  I also really hope that by sharing our story and putting a  face - and a really beautiful face at that - to demonstrate the ultimate result of a broken system.

I'll keep you posted.

1 comment:

  1. If you need help with campaigning let me know? I had osteosarcoma at 21. My cancer blog: