Stephanie's fight for cancer drug
A PLYMOUTH woman is fighting to get a life-extending drug on the NHS after she found out it is freely available in 14 European countries.
Stephanie Chouette, aged 34, has breast cancer which spread to her vertebrae and liver, and only has a few months to live. The drug, Avastin, would probably double her life expectancy but is only available in the UK if patients can show "exceptional circumstances".
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BATTLE: Stephanie Chouette is challenging the NHS after finding out Avastin is freely available in 14 European countries
Last week Stephanie's request for the drug, which would cost £2,400 a month, was turned down by Plymouth PCT.
She said: "I can't believe they are going to let me die just because they won't pay.
"I don't think it's just my case. I think everyone should get it.
"This is like shutting down the A&E department, saying 'we don't want to pay for that, just die'."
She said Avastin may allow her to live until better drugs are developed.
Stephanie is French but has been living with her English partner Ali in Plymstock for the last four years.
Just before Stephanie moved to Britain she was diagnosed with breast cancer, at the age of 30.
She was shocked, but she points out: "It can happen to anyone."
As a permanent resident from an EU country, Stephanie was treated on the NHS, receiving regular chemotherapy, painkilling drugs and other treatments.
"The doctors and nurses are wonderful," she said. "But I had noticed that the NHS are cutting off some comfort treatments."
The debilitating process meant that she had to stop work as a self-employed computer technician, and unfortunately the cancer spread to her bones.
This summer Stephanie was visiting relatives in France and arranged to have the chemotherapy she needs there.
Tests carried out during her visit showed the cancer had spread to her liver, and the French doctors prescribed and administered Avastin. Stephanie was surprised because she knew the drug was not available in Britain, but said that after taking it she felt better than she had for the last four years.
When she returned to Plymouth, her English doctor, Derriford's head oncologist Dr Steve Kelly, put in a request with the PCT for Stephanie to get Avastin.
He had to show exceptional circumstances because NICE, the government body which decides if new drugs are to be made available on the NHS, has stopped its appraisal of Avastin after the manufacturer, Roche, refused to co-operate.
It is one of a number of disputes between NICE and the pharmaceutical giants over the increasing cost of medicines. NICE insists on data on clinical and cost-effectiveness because it believes some drugs are overpriced.
A spokesman for Plymouth PCT said: "The Exceptional Treatment Panel takes account of NICE guidance and then reviews each application to see if it is an exceptional case which should be approved.
"The panel found that the application did not demonstrate exceptionality. If the patient or their clinician feel that the panel did not have all the relevant information to help them consider the individual case, they have the right to appeal.
"NHS Plymouth does support and fund a range of alternative treatments for breast cancer which have been assessed as safe and clinically effective."
Stephanie's partner Ali said: "We shouldn't have to prove exceptional circumstances. It's their duty to keep Steph alive."
The couple, who say they know other women who could benefit from the drug, intend to appeal against the decision.
Stephanie said: "I would like several of us to go to that commission and show them our faces, because we are just numbers to them. I would like them to look us in the eye and say 'you are going to die because we won't pay for your treatment'."
If Stephanie's appeal is turned down, she could move to France to access the treatment there, but she says she wants to stay with her family in England. Commuting to France for treatment is not an option, because Stephanie would not be entitled to free medical care there when she is not resident.
Another option which is not available is paying for Avastin – under current NHS rules, if a patient pays for any part of their treatment they become ineligible for free care, so Stephanie would have to pay for her chemotherapy as well.
24 Comments
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by Toni, Ohio, USA
Friday, September 26 2008, 4:15PM
“Stephanie,
Don't give up. Never give up.
You and Ali are in my heart and prayers. The world is waking up to your situation and people are outraged by what you have endured.
xoxo to you.”
by Stephanie Chouette, Plymouth
Thursday, September 25 2008, 3:40PM
“Plymouth PCT is still refusing to give me an answer about my Avastin request.
I have told them I am ready to fight really hard for justice and that I am ready to go very far.
This situation is a real scandal. I'm appalled.
When you are ill and go to a hospital you expect to be taken care of, to be kept alive. In Britain when you go to a hospital you are not diagnosed with tests, but with a calculator. If your condition prices above a given amount, too bad for you, they let you die.
For the NHS a good patient is a dead patient. A dead patient doesn't cost a penny.
This is happening in a rich western country in the 21st century.
This is about every one of us. We should all confront the PCTs and NICE.
If you want to contact me you can email me at this address : busyb@free.fr
Many thanks for all the people who are showing support .”
by fillymum, spain
Thursday, September 25 2008, 2:10PM
“This is an intolerable situation, one that should not be allowed to continue. I thought that regardless of European Nationality any patient from a member state was entitled to treatment. I live in Spain and have breast cancer, I am British. My treatment has been 5 star, no drug has been unavailable because of cost.
The NICE panel should hang their heads in shame. This young woman needs all the help she can get. Cancer loves young bodies, it gallops away at an alarming rate in a young host. She does not have time to wait for decisions to be made by a panel of people who are playing God with innocent peoples lives.
It makes me cringe when I see the amount of money that is wasted by the British Government on totally ridiculous projects that will never save or prolong the life of anyone, the amount of money that is spent in the name of politics, the hand outss that are given willy nilly to undeserving causes, the amount of money that is spent OUT of the U.K.
Wake up not so NICE and start saving lives instead of taking them.”
by Jonathan, Hazel, Oscar & Orlando, Ermington
Thursday, September 25 2008, 8:45AM
“Steph and Ali, Love to you both from all of us. Come and stay in our clifftop chalet! These wretched people at Roche who inflate the prices of drugs - I pray they have a change of heart. Your courage and life-affirming attitude are of course an inspiration. Take no thought for the morrow...”
by Vivienne, Sussex
Wednesday, September 24 2008, 5:08PM
“Obviously the EU does not mean equality between the member countries. My cousin sold her home and self-funded a drug unavailable to her through the NHS for her lung cancer, and now 'they' have seen how well she has done on it, she is now getting it on the NHS. How mad is that? Had she not been in the position to sell a home and fund it, she would now be dead. She had to sell her home to live? Not all of us have the wherewithal to buy drugs and anyway, I thought that was the reason the NHS was started, so that we all have equality of treatment.
The bigwigs need to get it themselves, then they may understand. Oh, sorry, they probably can afford to self-fund - go figure !”
by karen, cambridgeshire
Wednesday, September 24 2008, 3:23PM
“i think its disgusting in this day and age that this goes on ,that people like this lovely couple have to fight like they are.Whats wrong with this country ? why is this board playing with this girls life ,who has a right to play god ? noone in my eyes ,being a breast cancer patient in remission myself thinks that having cancer is hard anough and chemotherapy is so so hard and living with the side affects are with me to this day,this situation makes me so so angry,give this lady what she needs and deserves . N.H.S is there for everyone . Gorden Brown has said he wants free treatment for all cancer patience next year what about NOW not next year,i really hope with all my heart that Steph gets the treatment she needs ,karen /kazza”
by Tim, London
Wednesday, September 24 2008, 10:56AM
“This is something that should concern everybody. It's not a question of national origins. We need to keep putting pressure on the PCT.
'The Doctor'”
by Dr Nelson, London
Wednesday, September 24 2008, 10:55AM
“Steph's fight is a fight for all of us. We have to keep putting pressure on the PCT to change.”
by Josie, London
Wednesday, September 24 2008, 10:35AM
“Distressing and disgusting. Having lost one young friend in similar circumstances very recently, it seems horrific that this is allowed to continue. Keep fighting Steph and Ali, behind you all the way.”
by reboot, france
Wednesday, September 24 2008, 9:32AM
“how can the members of the PCT sleep at night, PLAYING GOD !!”