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Members of the cystic fibrosis community from around Ireland gathered for the “Support the Kaftio 35” protest outside Leinster House

Clare mum of girl with CF vows to fight for life-changing Kaftrio

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AN Ennis mother of a child with Cystic Fibrosis has vowed to continue to fight so her child and others can access ground-breaking treatment at the centre of a dispute between the HSE and a pharmaceutical company.

Barbara Buckley was among hundreds from across Ireland who last week gathered outside Leinster House for the “Support the Kaftrio 35” protest.

Cystic Fibrosis Ireland estimate that around 140 children aged six-years-old to 11-years-old are already are on the drug Kaftrio, but 35 children with a particular genotype are not as they are outside the 10-year Portfolio Agreement that was signed by the HSE and Vertex in 2017.

Barbara’s daughter is almost six years old and had expected to begin the treatment after Christmas, however without a resolution to the dispute she is set to join those who have been excluded.

“Time is vital. Every day and every week ahead counts, CF won’t wait for the HSE and Vertex,” she told The Clare Champion following the protest.

“CF Ireland’s motto is, ‘No child with CF will be left behind’. And every day they go without Kaftrio is a day where unnecessary irreversible damage is being caused to their little bodies.”

She was joined at the protest by members of her family and friends alongside other campaigners.

“It was a very emotional day advocating for our children’s health, the health of the 35 children and the younger children who are coming along the line who will join this cohort if it is not resolved. A lot of the TDs and Senators came out and met some of the children that were there and the consensus among them all was that everybody wants to see this resolved as soon as possible.”

Barbara Buckley of Ennis with Emma Fitzpatrick, of Sixmilebridge, and her eight year old son James. They are calling Kaftrio to be made available for thirty five children, who suffer from Cystic Fibrosis, who are eligible for the drug, which is not currently being reimbursed. Photograph by John Kelly

She believes the protest was a “positive step” for the campaign saying Minister for Health Stephen Donnelly has agreed to meet with Cystic Fibrosis Ireland with a date yet to be fixed.

“It’s a waiting game, but we will keep advocating or these children until we get Kaftrio,” she says. Cystic Fibrosis Ireland is calling on the Minister for Health to intervene in the dispute and to agree to independent arbitration if the deadlock continues.

While her little girl’s health is doing well at the moment, Barbara fears the impending cold and flu season.

“A simple cold can land a person with CF in hospital for two weeks on IVs and anti-biotics. If they had Kaftrio it would protect them and reduce the need for hospitalisations hugely, with less time on nebulisers and physio, certain medications and anti-biotics.

“Our biggest hope for our own child, the 35 children and all the children coming along the line that would be excluded is that they get Kaftrio as soon as possible to keep them as healthy as it can and give them the best chance going into the future.”

During the protest purple roses, the emblem of the Cystic Fibrosis community, were presented to the Head Usher of Leinster House – who received them on behalf of the Ceann Comhairle – to highlight the plight of the 35 children.

There were speeches from Grainne Ui Luing whose two daughters are waiting for Kaftrio; CF and Transplant Campaigner Jillian McNulty, who has benefitted from Kaftrio and Philip Watt, CEO of CFI.

Mr Watt said, “Until there is a resolution to this Boston/Dublin stand-off, the healthcare of the ‘Kaftrio 35’ remains compromised in a dispute not of their making and which is increasingly raising major ethical and human rights concerns as 140 children gained access in May 2022 and 35 children remain excluded. Healthcare delayed is healthcare denied.”

When contacted by The Clare Champion a spokesperson for Vertex said, “Vertex acknowledges the protest that was held by Cystic Fibrosis Ireland last week. We are committed to seeking a rapid resolution for the 35 children who currently do not have access to Kaftrio, in addition to the other populations of CF patients who could be eligible in the future. We remain in discussions with the HSE and are keen to accelerate this.”

A spokesperson for the HSE said the application for pricing and reimbursement for a subset of the licensed population in the 6-11 year cohort for Kaftrio “remains under consideration”.

“The HSE cannot make any comment on possible outcomes from the ongoing process. The HSE is committed to providing access to as many medicines as possible, in as timely a fashion as possible, from the resources available (provided) to it.

“The HSE robustly assesses applications for pricing and reimbursement to make sure that it can stretch available resources as far as possible and to deliver the best value in relation to each medicine and ultimately more medicines to Irish citizens and patients. HSE decisions on which medicines are reimbursed by the taxpayer are made on objective, scientific and economic grounds.”

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