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'I can’t risk my son’s life': Families with vulnerable teenagers left waiting for answers on vaccine access

The Taoiseach has asked Niac to give advice on vaccinating children with underlying conditions.

“WE’RE SITTING HERE waiting for them to approve this vaccine so we can try to keep our daughter safe.”

Aideen Herdman is a 14-year-old teenager in Navan, Co Meath.

Aideen, who has epilepsy and scoliosis, lives on oxygen, and she would be at high risk of severe illness from Covid-19 if she contracted the virus.

Her parents, Sheona and Chris, are waiting for an answer on when vulnerable teenagers like Aideen might expect to receive a vaccine.

The European Medicines Agency has approved the Pfizer vaccine for 12 to 15-year-olds and rollout has began in other countries, but no decision has been made yet in Ireland on its use.

In a statement to The Journal, the National Immunisation Advisory Committee (Niac) said that it would publish an evidence report in approximately the next week on its website.

There is no indication yet as to what Niac might recommend or when the vaccine would start to be given to teenagers if it is approved.

Taoiseach Micheál Martin confirmed this afternoon that Niac has been asked to give advice on vaccinating children with underlying conditions, the Press Association reported.

“I do understand that it’s very worrying for the families and it’s something I hope that we can get advice back on quickly, to get moving on,” Martin said.

He said vaccinating children with underlying conditions is particularly “urgent”.

Waiting for an answer

“She’s in a wheelchair. She can’t communicate, but you can get a smile out of her,” Aideen’s father, Chris, told The Journal.

“The scoliosis is starting to squash down on her organs. They won’t operate because if they put her under anaesthetic, they’d be worried she wouldn’t come out of it,” Chris said.

“Aideen suffers from respiratory problems as well, which is one of the things that this virus attacks.”

Chris is Aideen’s primary carer and he’s anxious to know when she might be able to receive a vaccine to protect her against Covid-19.

“Five weeks ago this Friday, the EMA approved Pfizer for 12 to 15-year-olds,” he said.

“We’re sitting here waiting for them to approve this Pfizer, that’s been approved by the EMA, so we can try to keep our daughter safe.

“It’s not easy and we’re not getting much help, we’re getting nothing from the government, no information.”

In Limerick, Joy O’Donoghue is a single mother who has been homeschooling her sons Jason, 12, and Liam, 8, since March 2020.

Jason, who due to start secondary school in September, has Cystic Fibrosis, a chronic disease that affects his lungs.

When the vaccine was approved by the EMA and the European Commission, the hope was that, yes, it’s here, the statistics look great, the trial study looks great – that they can’t drag their feet on this surely, that this is something that would be seen as important and they would push forward with it,” Joy told The Journal.

“Yet here we are a month later, still waiting.”

Vaccine approval

The EMA recommended that Pfizer could be used for 12 to 15s at the end of May.

Clinical trials found that the vaccine was safe and effective for that age group.

Now, it has to be authorised in Ireland before it can be administered.

At a briefing on Thursday, Deputy Chief Medical Officer Dr Ronan Glynn said that vaccination of teenagers is among several questions that Niac is currently considering, but that no decision has been made.

“Niac are looking at all of the evidence, they’re weighing it up, and when they feel that there’s an appropriate level of evidence there to give advice, they’ll give advice and we’ll take that advice,” Dr Glynn said.

Earlier that day, the HSE Live Twitter tweeted that vaccination “may be considered for children over the age of 12 with severe disabilities who spend time in residential care settings for children with complex needs”.

Asked at the briefing whether that was the type of programme that is being considered for expanding vaccine access to younger teenagers, Dr Glynn said that there “have been people and groups within all ages who’ve been disproportionately affected for a variety of reasons”.

“I am sure that Niac will give specific consideration to whether there are high or higher risk cohorts within that age group who should be prioritised or whether in fact it might be faster to give it to all teenagers,” he said.

“We’re only talking about three or four years worth of an age group, which is not that many people in the overall scheme of things and it could be given quite quickly, obviously subject to supply, but ultimately none of that can happen until we’re happy that the evidence supports such a move.”

He said that “no recommendations, no advice and certainly no decisions on that have been made at this point”.

NPHET brief 005 Public health officials at a NPEHT briefing Leah Farrell / Leah Farrell / /

Families of vulnerable children say that the long wait for a vaccine for their teenagers is putting them at continued risk.

Liz Ryan and her daughter, Libby, live in Limerick, where Libby is going into Transition Year in September

Libby, aged 15, has spinal muscular atrophy and had surgery in 2019 when her lungs collapsed.

Liz spoke to Libby’s respiratory consultant, who said that his hands were tied until the authorisation in Ireland, but that he can’t wait to see the rollout to high risk teenagers.

“They’re sitting waiting to do it,” Liz said. “It’s just taking so long.”

Libby wants to do a social placement in a primary school as part of the TY programme, and the question for her is whether that can happen if she’s not vaccinated.

“There’s kids desperately waiting on this and I just don’t know what the hold up is,” Liz said.

With the four week interval between the two doses of Pfizer and the seven day period after the second dose before an individual is fully protected, “the time is coming now that we need to start making moves” to be vaccinated before the return of schools.

Chris said that waiting to vaccinate the age group under a school programme would be too much of a delay for those at risk of severe illness.

“That’s no good to the vulnerable children. Do the vulnerable children now and the others when they go back to school, but get the vulnerable children done,” he said.

Similarly, Joy emphasised that she believes “what other parents do with their children is their prerogative – if they don’t want to vaccinate their children, I’m totally fine with that”.

“But I think if people have a right to refuse a vaccine, parents like me should have a right to get our children vaccinated,” she said.

“Not only that, my son wants his vaccine. I think at 12 years of age he has more of a grasp on what vaccinations are, how they work, than an awful lot of adults in this country.”

Joy spoke to Tusla last summer and decided to homeschool her two sons because of the risk to Jason if he contracted Covid-19.

“I wasn’t willing to take that risk with my son’s life,” she said.

“He’s after missing out on sixth class, which is a rite of passage for kids when they’re the most senior in primary school. You’re going to be a teenager, you’re going into secondary school – it’s a big step for him.”

“He’s going into all-boys secondary school. All the girls that are in his class, and Jason would be friends with a lot of them, aren’t going to be going on to that secondary school. He never got a chance to go back and say goodbye to them.”

Rolling out

Other countries have approved or began to administer the Pfizer vaccine to 12 to 15-year-olds.

Some – like the UK, Belgium, the Netherlands, Germany, Sweden and Finland – have approved it first for teenagers who are at a high risk or have underlying medical conditions.

Others – including Denmark, Spain, France, Poland, Estonia, Latvia, Lithuania, Slovakia, Czech Republic, Austria, Switzerland, Italy, Hungary, Romania, Bulgaria – approved it broadly for the age group.

Not all of them have started to administer the vaccine yet, but in the United States, for instance, the Centre for Disease Control and Prevention reports that more than eight million teenagers between 12 and 17 have received at least a first dose.

Put on pause

For families in Ireland like Aideen’s and Jason’s, life has been put on hold while they wait for a vaccine.

“I’m a single parent, and their Dad hasn’t been able to take them since January – the case numbers in Limerick started getting really high again. We came to a mutual decision, between the two of us that, in Jason’s best interest, he wouldn’t take them,” Joy said.

My children haven’t hugged their Dad since January. I think that’s a very sad fact. They love their dad and they love spending time with him.”

“They haven’t seen his parents, they haven’t seen their cousins, and these are family members that they would have been quite close to previously.”

Joy’s father, who was living in England, sadly contracted Covid-19 in December and died on Christmas Day.

“I couldn’t go over to his funeral because I couldn’t risk bringing it home to Jason.”

When he was younger, Jason had regular bouts of pneumonia and spent two to three weeks at a time in hospital.

“Lung function is a big thing with Cystic Fibrosis. Jason’s lung function at this moment in time is 87%. That’s the best it’s ever been. At his lowest, he hit the 50s, and that was due to having severe bouts of pneumonia,” Joy said.

“My father got Covid pneumonia. I’ve seen X-rays of it, I’ve heard him speak before he was intubated, I heard him struggle. I know what it does to your blood oxygen levels.

“I can’t risk my son’s life.”

If it happened again, would I do it all over again? Yeah, because they’re my kids and my first priority as a parent is to make sure that they’re safe. But if there’s a vaccine, I don’t see why we have to keep waiting for it.”

If Jason received a vaccine, Joy says that would allow the family “some freedom”, but that right now, they are “essentially prisoners in our own house”.

“Where the government are concerned, I feel like we’re the forgotten. Family carers of younger children, we are the forgotten.”

Back in Navan, Chris and his family have also been staying inside for the last 15 months, ordering shopping online and avoiding bringing Aideen to any crowded areas.

“Usually, she’d get to go on holidays,” Chris said.

“When you get on holidays, she enjoys the water, she likes the sun, but obviously she’s not going to see that for a while,” he said.

“She didn’t get there last year, she didn’t get there this year. We don’t know how long more she’s going to live for. She’s not going to be able to live with the scoliosis – eventually, she is going to pass away. But we’re doing the best we can for her at the moment.”

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