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.