Belfast Telegraph

We'll sell everything to get drug Nicole needs, vows brother of Newtownabbey woman in cystic fibrosis battle


Nicole Adams in hospital
Nicole Adams in hospital

By Claire O'Boyle

The brother of a Newtownabbey woman desperately ill with cystic fibrosis has told of the "unparalleled generosity" shown in their bid to raise money for pioneering drugs which they hope could help save her life.

Nicole Adams (28) was taken to hospital last month after a series of devastating infections left her lung capacity reduced to just 13%.

While her condition appeared stable, the talented hairdresser was rushed to intensive care last Wednesday. She was still in intensive care on Sunday night.

Her older brother Lee told of the family's gratitude for people fundraising to support Nicole.

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Nicole Adams in hospital

Relatives have been working to raise the estimated £20,000 needed for a month's supply of triple combination therapy drug Trikafta.

It has been available in the US since October but is not yet available on the NHS in Northern Ireland.

Lee said: "The generosity is unparalleled to anything I've ever seen. A family friend who set up the GoFundMe page has a heart of gold and deserves a medal and we've had people we don't even know fundraising and donating things like a signed football and boxing memorabilia, which has really helped.

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"We're close to the target so we're going to take a pause in the fundraising.

"As a family we were willing to sell everything in our possession for even a short course of this drug. We really believe it could save her life."

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Nicole with brother Lee as children

Lee explained how his sister's health took a turn for the worse last week.

"On Wednesday morning Nicole was feeling brilliant, as if she was making real progress," he added.

"Then all of a sudden her body took a complete U-turn and the next thing we knew we were in the ICU praying for dear life.

"But everyone all along has been fantastic. The ward staff, ICU and the consultants have been amazing and they're a credit to the NHS and the City Hospital.

"We're all just praying that we get this particular treatment. Not just for my sister, but for all those in desperate need of it. We all deserve life.

"Especially my sister. She has only love for all her family and friends and what's happening to her isn't fair."

Nicole was diagnosed with cystic fibrosis when she was just six weeks old and in 2014 she contracted an airborne disease - burkholderia cepacia - in Thailand.

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Nicole Adams with boyfriend Ciaran McVarnock

Nicole's boyfriend Ciaran McVarnock (27) said: "They're calling Trikafta the wonder drug.

"It's saved lives and we need to get it for Nicole as soon as possible.

"I know it's a complicated situation, and the care she has received is incredible, but this is life and death for her.

"It makes me so angry and frustrated that the drug is out there and that she can't get it.

"We've been overwhelmed by the positivity from around the world. We've even had cystic fibrosis patients in America offer to send Nicole their Trikafta tablets, saying it's made them feel so much better they could do without it for a bit, but of course we can't accept.

"She needs her doctors to give it to her and she ticks all the boxes to receive it on compassionate grounds. Nicole is a fighter, she is so strong, but I'm worried about how much fight she has left in her.

"She is trying to stay positive. We all are. But she needs Trikafta now."

For medication to be approved for routine use on the NHS, it must first be licensed by the European Medicines Agency and then approved by the National Institute for Health and Care Excellence (NICE).

The NICE said: "NICE understands the need to provide guidance on the use of Trikafta as quickly as possible and we have already started work on it."

Vertex, the US pharmaceutical company which produces the drug, said: "We cannot comment on specific patients, but take all requests for compassionate use of our medicines very seriously."

The Health and Social Care Board said: "We are very sorry to hear about the difficult and distressing situation faced by Nicole and her family.

"Use of medicines on a compassionate basis may be undertaken following agreement between the patient's consultant and a pharmaceutical company. The board understands that for a patient to receive a medicine on a compassionate basis they may first need to meet specific eligibility criteria as set out by the manufacturer.

"The board does not have a role in the decision-making process for a patient to access a medicine on a compassionate basis.

"Health professionals looking after such patients are best placed to ensure that they receive the treatment they need based on clinical need."

Earlier this month the Irish Government struck a deal with Vertex, meaning the medication will be available in the Republic as soon as it receives a European safety licence.

The gofundme page in support of Nicole can be found here.

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