Experts, not trolls, should guide us on emotive issues
The heartbreaking cases of Ava Barry and Charlie Gard have set the online herd off on a stampede, writes Philip Ryan
THERE are remarkable similarities between the tragic cases of Charlie Gard and Ava Barry. In both instances, the emotional turmoil endured by the parents of a severely ill youngster has pulled firmly on the public’s heartstrings.
The moral and ethical issues posed by the medical dilemmas arising in both cases have led most people to think: ‘what would I do?’
However, the struggles of Ava’s parents, Vera Twomey and Paul Barry, and Charlie’s parents, Chris Gard and Connie Yates, have also been politicised by interest groups and politicians pursuing an agenda.
Social media has played an influential role in bringing attention to the predicaments faced by the two families but the online herd mentality has resulted in some predictably nasty commentary.
Both cases also reveal the public’s increasingly complicated relationship with so-called experts. Experts can be in any profession, medical, legal, political or the media. Michael Gove was ridiculed when he infamously said the public had “had enough of experts” during the Brexit campaign — but there is a grain of truth in what he said.
The recent general election here showed a large section of the public were sick of traditional politicians. People don’t like medical advice from doctors when it doesn’t suit them and rulings from judges when they don’t come down on their side.
Traditional media, even though it is heavily regulated, is also getting a hard time as people shift towards bloggers and online commentators who have no responsibility for what they say and do. Not to mention the online platforms such as Twitter and Facebook which seem to be able publish carte blanche what they like — without any repercussions.
All of this has fed into the public reaction to the heartbreaking stories of Ava and Charlie.
The Charlie Gard case has gained international attention thanks to interventions from US President Donald Trump and Pope Francis. Little Charlie was born with a rare genetic condition that left him brain damaged and terminally ill.
Doctors at Great Ormond Street Hospital in London — internationally recognised as one of the world’s best hospitals — believe he does not have any chance of recovery and the most humane thing to do would be to remove all treatment and allow him to pass away peacefully.
Charlie’s parents, however, have different ideas. They raised more than €1.4m in online donations to pay for their son to go to the US, but the London courts are preventing them from travelling.
The couple have fought the doctors from the UK’s High Court all the way to the European Court of Human Rights. They want Charlie to be allowed to travel to the US to take part in a medical trial that has yet to be tested on laboratory mice.
They will do anything to keep alive the hope their only child will survive. The doctors say it would be cruel to make Charlie travel across the Atlantic as the pain from his condition would be too much.
The story has captured the British public’s imagination and supporters — branding themselves ‘Charlie’s Army’ — protested outside the courts last week as new evidence was heard about the US treatment.
It is an extremely emotive situation and everyone recognises the pain involved for the young family. However, last week the judge overseeing the case threatened to punish online trolls who were targeting doctors with the “most vile abuse”. You would hope most people realise doctors are only trying to do what is right by their patient.
Back in Ireland, Ava Barry’s ordeal made headlines again last week. Ava has a severe form of epilepsy called Dravet syndrome. It is a truly awful condition which leaves the six-year-old with a very poor quality of life.
She can suffer up to 500 seizures a month. The family want to be allowed to use a form of medicinal cannabis to treat Ava. They say the treatment dramatically reduces the number of attacks she suffers. However, it is not legal in Ireland.
To highlight Ava’s harrowing condition, the Cork family released a video of their daughter shaking violently during one of the many epilepsy episodes she endures as part of her young life.
Vera Twomey has campaigned tirelessly on behalf of her daughter, walking from Cork to Dublin twice and holding numerous protests outside Leinster House. She undoubtedly has the public’s support for her campaign as well as the backing of Dublin Mid West People Before Profit TD Gino Kenny.
Kenny is one of the gentlemen at Leinster House. He is a new TD but unlike most of his far-left colleagues he is almost universally liked and respected across the political divide. He dedicated his first year in the Dail to legislating to have cannabis legalised for medicinal purposes. The legislation put before the Houses of the Oireachtas was a modified version of a bill previously proposed by MEP Luke ‘Ming’ Flanagan.
The Cannabis for Medicinal Use Regulation Bill easily passed through the first and second-stage debates before it was sent to the Oireachtas Health Committee for examination. A draft copy of the committee’s final report found a number of flaws with the bill and recommended it should not go any further through the legislative process. The report is based on evidence given by Department of Health officials and Kenny.
It found the bill could have “unintended policy consequences” which might result in a “leakage of supply of cannabis to recreational markets and a lack of safeguards against harmful use of cannabis by patients”.
Kenny argues this would not be the case and insists the only purpose of his legislation is to allow sick people like Ava Barry to have access to a drug that could improve the quality of their life. The report also found there is a shortage of medical research in the area.
The Health Products Regulator Authority (HPRA) — the State body responsible for regulating prescription drugs — agrees that there is a shortage of medical evidence showing the benefits of giving patients cannabis-based drugs.
Kenny also takes issue with the committee’s conclusion which he believes are “very cautious” and even “biased” towards the Department of Health’s view.
He told the Sunday Inde- pendent that he acknowledged the work of the HPRA but feels the committee did not take into consideration the policy in other countries.
Flanagan went even further and released a statement attacking political parties and the “faceless” HPRA for not backing his career-long campaign to relax the law around cannabis.
Meanwhile, Ava and her family are in Holland where they can access the treatment that they say will make her better. The couple raised money for the trip through online donations collected on the GoFundMe website. They have raised almost €30,000 which will hopefully cover most of the costs of their relocation to Holland.
Last week, Vera Twomey was understandably upset when she learned the cannabis bill had hit a roadblock. She called it a “betrayal” and said Health Minister Simon Harris and those who stopped the legislation passing through the Health Committee should be “hanging their heads in shame”.
Fine Gael TD and pharmacist Kate O’Connell was one of the politicians on the committee. Staff in O’Connell’s pharmacy, who have nothing to do with politics, were verbally abused over her stance on the bill.
Everyone wants Ava and Charlie to live the fullest lives possible. To be able to enjoy life in the same way as other children their age.
The dawn of social media has made everyone an expert — be it in medicine, law or politics. We live in an era where people like to hear only what they want, not what they need. A rush of public support on an issue, such as the tragic death of Savita Halappanavar, bounces politicians into legislative action.
But the emotive issues surrounding personal cases should not dictate policy and legislation for us all. We should also pay attention to those who have educated themselves in certain areas and professions so as to advise the rest of us.
‘Staff in O’Connell’s pharmacy were verbally abused over her stance’