Thunderclap over Strasbourg

The first we hear is at the beginning of December.

‘The vote will be this month,’ emails one Member of the European Parliament.  ‘Perhaps on the afternoon of the 15^th.’ 

‘Not possible,’ replies another. ‘That’s a Thursday. Most MEPs will have left Strasbourg by then.’

This vote is on a Resolution we have been working on for a year, a first step towards kick starting research into children’s illnesses. Now it appears that this desperately-needed demand for change will be buried in a late Parliamentary session when most Members will have already left town

.

We finally get official word on the Friday afternoon.

‘The voting is now confirmed for next week – here is the draft agenda.’

Having waited six months for our day in Parliament, we find ourselves with barely three working days to prepare the campaign.

In such circumstances, there is only one thing to do. Get on Skype.

The group goes through the options.

The stunts we had talked about, such as a ‘human gold ribbon’ dancing outside the Parliament building, are clearly now non-starters. But we do still have permission for a display in the entrance hall.

Can we get the banner there in time?

Anne says there is an ambulance leaving Luxembourg on Monday morning. She can put the banner in the back and get the driver to drop it off.

Can we get flyers printed? Who’s drafting the press release?

‘And what about the mailing campaign?’  I complain. ‘There isn’t enough time.’

‘Why isn't there?’ asks Nicole. ‘What have we got to lose?’

So, that weekend, we dust off the Letter Writing Toolkit, put it on the front page of the website and appeal for supporters to contact their MEPs.

Within hours, the replies start to stack up.

‘We have sent a letter from the Federacion Española de Padres de Niños con Cancer signed by our president to all the 53 MEP’s. We have sent an email to all our members organizations so as they can do the same and also to our parents.'

 ‘Done! Message sent to French MEPs and all members of SFCE’

At 11.00 a.m. on the 15^th, the day of the vote, messages from 500 supporters surge out simultaneously from a crowd speaking platform, creating a digital ‘thunderclap’ on social media. 

Not much more than an hour later, earlier than expected, the result comes in.

‘Hello all!  We are hearing reports the vote has passed! Should we publish now?’

‘100% sure. All parties were in favour. Sending out the press release – THANK YOU TO EVERYONE for your help!!!’

The success with Resolution 2902 was just one step in a complicated set of manoeuvres over 2016 involving backroom committees, public meetings, position papers and days of action. But what was remarkable about that week in December was how many people became actively engaged in such a short time. As my sister-in-law wrote:

‘Thank you for getting us going on such a worthy cause!’

We have no idea how many MEPs in total were contacted but, from messages we were copied into, we do know that this included every single Member in Austria, Belgium, Bulgaria, Croatia, France, Holland, Ireland, Spain and the UK. We even got Gibraltar!

The replies that have filtered in since from political representatives also demonstrate a depth of understanding that, a short while ago, we would not have thought possible.

Clare Moody, for example, Labour member for the South West, was able to set out our demands probably more clearly than we could ourselves.

      ‘Paediatric Investigation Plan waivers to be based on the mechanism of action of a drug, rather than just the type of condition;

    Paediatric trials to be started earlier in a drug’s development so that children do not wait longer for access to life-saving treatments.’

A message from the friend of a child with cancer put it even more simply:

‘He was lucky enough to be involved in a successful drugs trial when diagnosed and as such received ground-breaking cancer drugs. All children should have access to these at all times, not just by luck.’

A remarkable level of unanimity was also demonstrated. Take the UK, for example, where there was cross-party agreement between Labour, the Tories and the Greens. In addition, Sinn Fein pledged support from both sides of the Irish border, while Diane Dodds of the Democratic Unionist Party wrote this from Northern Ireland.

‘It is absolutely crucial that Government provide the direction required to assist medical researchers and pharmaceutical companies bring forward solutions. Enhancing this cooperation and expertise in a cross-border, international context will be the key to making progress.’

This then was how unified our representatives were in the demand for a new deal for children with cancer. 

Can we claim that our campaign had an impact on the vote? It’s difficult to say. 

Can we learn any lessons from this most recent stage of the campaign? I believe we can. 

For if we can show the kind of discipline, unity and can-do mentality displayed this past month then nothing, no prevarication or bureaucratic hurdles, no corporate interests, not even bloody Brexit, can stop us pushing through for the change we need in 2017.

Happy Christmas, everyone.

It's about acceleration

Pam Kearns, Head of the Cancer Research UK Clinical Trials Unit, talks frankly

about the current landscape in children's cancer in an interview I did with her late this summer. Read what she has to say here...
https://unite2cure.org/2016/10/16/its-about-acceleration/

Should I stay or should I go?

The 2016 EU Referendum Voting Guide dropped onto my doormat a week ago, along with slurry of pizza delivery leaflets and an appeal from the Cats Protection League. The Guide explained how to vote on 23 June and it gave each campaign a single page of A5 to set out their case. One camp, voteleavetakecontrol.org complained that we pay £350 million a week to the EU, while the other, strongerin.co.uk, pointed out we got £91 billion a year back. In the face of these dubious statistics, I might well have been tempted to bin the junk mail and toss a coin instead.

Except that I view the prospect of Brexit from a very personal (some might say obsessive) point of view, that of a parent whose child had cancer, and all my experience of the past ten years tells me that this decision is vital. Though, like most of the population, I carry the nagging doubt that whatever you do, you just can’t win.

As I type this, I am sitting on the Eurostar as it rolls towards the Channel tunnel on a balmy May evening, sun glinting on the razor wire of the Calais security fences that have been erected to keep migrants out. I am returning from a day at the European Commission as a member of a delegation  of two medical researchers, one MEP, two SPADs, the European Officer for Cancer Research UK  and a couple of parents like myself. Over lunch, the gossip inevitably turned to Brexit and, unsurprisingly, for a café on the Place de Luxembourg, the viewpoint was somewhat one-sided.

However, for our little party, the arguments are pretty straightforward. The cancers that affect children are made up of multiple rare illnesses and so it is not viable to conduct research trials in any single country, even one as big as Germany; there are simply not enough patients to generate statistically reliable data. Cancer research has to be international and, in the same way that American oncologists work at a federal level, we have to work through the EU.

I am on the steering committee of something called Euro Ewing’s 2012, which conducts research into the illness that my daughter had.  Now, personally, I am not convinced that Euro Ewing’s 2012 is doing anything very different from what Euro Ewing’s ‘99 was doing a decade or more ago. But I think it is better to be inside the consortium, pushing for something better, than to throw up my hands and walk away.

Euro Ewing’s, unusually, is paid for out of an EU budget. An awful lot of research is still financed by charities, though, increasingly, it is recognised that it is only the drug companies that have the technical resources to unpick the tangled matrix of childhood cancers. The trouble, of course, is that that they don’t. There is no profit in contending with a medical conundrum as complex as this, one which requires individual products for numerous, tiny niche markets.

This is where Europe comes in again, or so my fellow delegation members would say. Pharma is a global industry and the only way it can be compelled to include the needs of children in new drug development is through international action, through regulation, the stock in trade of the European Union.

So it was that we found ourselves, this morning, across the table from the European Health Commissioner urging him to reform regulation of paediatric medicines so that the drug companies would finally take children’s cancer seriously.

The Commissioner is an interesting man, a Lithuanian, who was an active dissident under the Soviet rule. A medical doctor himself, he leant across the table and did his best to make a human connection. He explained he understood the devastation of cancer; his mother had lost three of his brothers to the illness. But then he started to speak like an official. The review of the regulation would take longer than expected, he said. Then there would need to be an impact assessment and after that, other administrative hurdles to traverse. It might take years before any changes could be made.

The frustration we felt is one of the facts of life of the European Union. The wheels of bureaucracy turn slowly and power is in the hands of the Commissioners, who initiate legislation, even though they themselves are not elected; they are appointees, and thus are not directly accountable to voters.

We did, in fact, have an elected representative at our meeting, Glenis Wilmott, the MEP who had arranged for us to be there, and she encouraged us to take heart. She had been instrumental in getting the Clinical Trials Regulation put right, another piece of legislation crucial for medical research. If this had been possible, she reasoned, then so were the changes we were calling for.

We finished our discussion with the Commissioner by demonstrating our own mandate; we presented him with 150 letters from parents and survivors from across Europe, each sealed in a separate ‘gold’ envelope, the colour of childhood cancer awareness.  We took a ceremonial photo and departed, leaving the Commissioner like an overburdened Willy Wonka clutching more golden tickets than he could handle.

Several security checks later, we were in another board room being briefed by Emily, Glenis’s assistant, on the Byzantine workings of Brussels. She was fairly confident we could get a resolution before the European Parliament in Strasbourg in September but even if this were passed, it would only be a recommendation; the Commission would make the ultimate decision. However, if we could get support at a national level, then that could exert influence on the Council, which plays a crucial part in the legislative process too.  In addition, Emily explained, the Presidency will rotate to the UK in the second half of 2017 and that would be an opportunity for Britain to set European priorities on health. So we should lobby on that too. In the meantime, the Presidency will be passing to Malta. Did anyone have contacts in Malta, she wanted to know. We looked around the table and shrugged.

Will engaging with this confounding process produce any results?  I honestly have no idea. But there is only one way to find out and we owe it to the writers of all those golden letters to give it our best shot.

Last month, I was in Serbia, a country still frozen out of the European Union. I was there to join a gathering of people like myself - Mums, Dads and mladice, the young survivors of childhood cancer.  We are an unusual assembly; we have no flag and we share no first language, but this unlikely tribe is as much a community as any I have ever been a part of. There is a young girl, Zuzana, who each year takes the trouble to come and talk to me. She had the same illness as my daughter and is not that much older than Bethan would have been. They could not treat Zuzana in her native Slovakia so her parents took her to Vienna, where she responded well to chemo. She has now moved on again to Berne or Baal, I can’t remember where, but she is doing her PhD there and apparently getting along fine. She tells me she doesn’t think of herself as Slovakian anymore or even Swiss. She says she is a European.

So when I go to the polling station on the 23^rd, the choice for me will be simple. I’ll ignore the statistics and the scare tactics, and I’ll cast my vote for Zuzana.

Belgrade postscript

On the final morning of the conference, Marianne (of VOKK ) showed a remarkable video about a teenage girl called Pien, who is the youngest beekeeper in the Netherlands. Part way into making the film, Pien had been diagnosed with osteosarcoma, bone cancer. The producer suggested they stop filming but Pien insisted they continue. The result is this magical 16 minute short, Pien the Queen Bee.

Click here to open video

The film had a particular resonance for me and my wife Hilary, who was also at the conference. I wear an enamel badge of a bumble bee on my suit lapel and people often ask me why. The answer is that it is part of the paraphernalia that the Bumblebee Conservation Trust send me every year; my daughter Bethan was a member and we keep up the subscription.  Joining the BBCT was one of the many fads of a teenage girl but it also says something about the kind of person Bethan was. I don’t suppose she knew any more about the ecology of bees than I do, but she understood that everything in nature is connected and she instinctively sided with the small against the mighty and I think she found these bumbly little creatures in their stripy fleeces fun. So I wear the badge to remember her and on the stone above the plot where her ashes are buried (like Pien, she had bone cancer), the outline of a bee is chiselled, as a tiny symbol of renewal and defiance. 

Letter from Belgrade

Childhood Cancer International seems to go from one extreme to another. Last year its European conference was in the far north west of Europe, in comfortable, social democratic Sweden. This year, we found ourselves venturing to the far south east, to the Balkans, countries that are well-represented in the organisation, but ones of which many of us feel we know little. This of course is the reason to be there. Parents and particularly survivors from the region have made themselves heard loud and clear at other meetings, but there is no better way to learn what life is like for children with cancer in these harsh but resourceful countries than to go there.

Any apprehension in the taxi ride from Belgrade airport is dispelled by the welcoming sun of the Serbian Spring which is already spiriting customers out into the pavement cafes. Across the way from the hotel, workmen in cradles, suspended high above the entrance to the national theatre, are constructing an elaborate display on a reassuringly familiar theme for a Brit abroad – Shakespeare’s fourth centenary.

The theme of the conference could not be more relevant - Standards of Care and the drive to give all children with cancer in European an equal shot. The plan for the continent is set out clearly by Olga from SIOPE. Then, advocates like Lejla from Bosnia and Irina from Serbia give us some home truths about what life is like in the region. The discussion moves from the cutting edge of innovation, giving children access to new trials for example, to the absolute basics: the lack of standard chemotherapy in some hospitals and of anaesthesia for simple procedures like taking bone marrow samples. A Serbian doctor explains that the problem of pain control is not necessarily even one of lack of resources, it is a lack of awareness that such intervention is necessary.

As always with CCI, the schedule is full-on and on Saturday evening, I find myself dashing in late for a hastily convened Skype meeting in nothing but my socks and pyjamas. It is important to be there, though, for the agenda is the key business for our representative group, Unite2Cure, the resolution that we will put before the European Parliament to urge the Commission to be bold in its review of the Paediatric Medicines Regulation.

The partnership of researchers, regulators and parents of which U2C is a part has thankfully changed its name from the longest acronym in history ( ENCCA/ SIOPE / CDDF / ITCC) to a simple verb: Accelerate. As the discussion moves through some surprisingly radical ideas for rewards and penalties, it feels like we might actually be  living up to our new name.

A quick change into a clean shirt and we are on our way to the Belgrade

restaurant our hosts have chosen for us.  Hilary, Cesare and I sit at a table with Vladimir, who runs the Serbian survivors’ organisation Mladice. He explains that the house band are Romanian, although for some reason I don’t quite catch, the accordion player is from North Wales. The long wait for supper gives them time to  play through their entire repertoire while we work our way through an enormous Serbian bread basket and a seemingly endless supply of beer. Vlad explains that the restaurant usually caters for wedding receptions, which in Belgrade can go on for three or four days, fuelled by music and pivo. So if we have to wait an hour or two for the evening meal, we should not be surprised.

The drink having loosened our tongues, we begin to talk about words, about ‘mladice,’ which he explains means ‘young trees, young fish, young anything.’ Still no supper, so the Romanian cum South Waleian band strike up again and the survivors, the kids, the mladice take the floor, drawn into an ancient circle dance somewhere between a Lebanese Debke and the  Hokey Kokey. Vladimir slips outside to share a cigarette.

The next morning, we assume that if anyone surfaces in time for our early
morning talk, they will still be suffering from the after effects of the araki from the night before, so we ditch the powerpoint and try to wake people up by putting them into work groups, getting them quizzing, debating and generally pulling to pieces our theme, the regulation that governs research into children’s cancer in Europe. Forty five minutes on and they are all writing letters to the European Health Commissioner, each of which we seal in  separate golden envelopes to carry with us to our meeting with the him in May. Our target is 100 letters; by lunch we have 75. It is a result.

All too soon, Hilary and I are being driven off in an airport taxi, wondering what sense to make of this battered, beautiful town. Sense, of course, has been staring us in the face since the moment we arrived, in letters pasted one hundred feet high on the wall of the national theatre, and now finally spelling out a single line of Shakespeare:

            ‘The web of our life is of a mingled yarn, good and ill together.’

Undeleted

3rd March. Today is Bethan's birthday.

I went to a poetry workshop at the weekend run by the mighty Lemn Sissay. I decided to post the resulting efforts as a birthday message.

You’re the face on my desktop,
The apple of my I-pad,
The message always bouncing,
The virus in my tablet.

You’re every track in every playlist,
Every cell in every spreadsheet,
Every entry in every blog,
The file left undeleted.

Be the last life in my battery,
The signal I have found,
The connection I have lost.
Boot me up, shut me down.

Edited highlights

I was invited to speak at the European Parliament in January for 'International Childhood Cancer Awareness Day.' This was, in a sense, the first round in what will be a long season of campaigning in 2016 to reform the Paediatric Medicines Regulation. Here are what were for me some of the big moments. 

Pam Kearns, Director Clinical Trial Unit, Birmingham (UK):

We all sit in the clinic with families who are looking for new drugs when they fail the current treatments we’ve got and we look to our adult colleagues in oncology who have a cupboard full of agents that they can offer both in industry trials and academic trials and we don’t have that in paediatrics and it’s not because those drugs don’t have a scientific basis on which they might work in children...

Glenis Wilmott, MEP (UK):

I think we, as parliamentarians, have to keep raising this issue until we do get to the review . We have to be ready with changes in the law. We’re going to try and put a resolution to the Parliament on this particular issue and we’re going to organise, I hate to say it, guys, a meeting with EMA and also the Health Commissioner …I think it’s important we get a review and an outcome so that the regulation is doing the job it’s meant to do.

Anne Goeres, Unite2Cure (Luxembourg):

Some of us will go to a Belgrade meeting in April where there are 80 countries represented, 180 different patient advocate or parent groups, and one of our aims as Unite2Cure when we go in April is of course to tell them about what we are doing, how we are doing, what are the goals and to help them push this topic to the public and to our MEPs…

Martin Schrappe, SIOPE President (Germany):

We are guests here in the European Parliament, we know this, but we are also playing partners; this is a major achievement that I would not have thought is possible… I know we are not at the end of the road. I think we will need to build coalitions with other partners from rare diseases and paediatrics, we are open for this.

Glenis Wilmott, MEP (UK):

We had this discussion when I was rapporteur for clinical trials, the person dealing with the

Clinical Trials Regulation,  and we thought we wouldn’t get anything near the sort of thing we wanted . But we worked together and it was by working together, the professionals, the patients, the NGOs, the pharmaceuticals and the politicians that we managed to get what I thought was a decent outcome on clinical trials. It’s frustrating, I know, and it does take time but you can only do it if you have everybody working for the same aim. So that’s what we’ve got to do now.

Now watch the full match.

http://www.siope.eu/news-and-resources/conferences-and-events/iccd/