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Keep Bella Breathing - Trikafta, the Cystic Fibrosis (CF) Non -Funded 'Miracle Drug' cost $470k per year!!

Cause page created in the Kiwi Kids category by Sarah Macdonald for "Isabella Powell(Bella)"


$220,590 donated
Given by 2327 generous donors in around 7 months
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Bella's main hope is Trikafta, as she faces the reality of losing her life!

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  Auckland

Seventeen-year-old Bella Powell lives with cystic fibrosis (CF). At 15 she was told she only had two years to live if her condition went untreated.

Cystic fibrosis affects the cells that produce mucus. They then plug up the tubes and passageways which puts massive amounts of pressure on the lungs, eventually wearing them out.

Since cystic fibrosis is destroying Bella's lungs, she needs a lung transplant. She was put on the lung transplant list, however a new set of lungs have yet to come and the risk is high, the lungs might not work - she could die on the waiting list or on the operating table.

Living with her condition is like "having a pound of weights on your chest", she says.

"Your ribs can't move, you can't get enough air in. Your body is always sore.

Bella, with nothing to lose, as she faces the reality of losing her life, started taking Trikafta. A drug that's in limited use in New Zealand, and says her breathing had cleared in six hours after taking her first pill.

She takes three pills a day, two in the morning and one at night. Two weeks ago before she started taking them, she could barely walk. But now she says she feels great.

"[It's] more than a miracle. If there's a word that's bigger than a miracle, it's that."

But Trikafta costs $469,000 a year. It's owned by American company Vertex, which sets the price and it isn't subsidised by Government drug-buyer Pharmac.

She also only has a three-month supply.

Generous donors have funded three months of Trikafta for Bella. As any family would, we are looking down all pathways to find more funding to keep Bella breathing!

This is where you come in!

Until this drug is funded in New Zealand we face having to pay $470k per year, this is an unimaginable amount of money for anyone and is Bella's lifeline!

Please donate to Keep Bella Breathing

More links:

https://www.facebook.com/TheProjectNZ/videos/752021508673131/

https://www.newshub.co.nz/home/new-zealand/2020/08/trikafta-campaign-group-calling-on-government-to-fund-miracle-drug-for-cystic-fibrosis-sufferers.html?fbclid=IwAR0cP9t5Mz10448N7_wg_n5QUHFSqTLlmB1aVTFU-nH22t2mtYz9qowEokA

https://www.newshub.co.nz/home/new-zealand/2020/08/kiwi-teen-with-cystic-fibrosis-sees-miracle-results-with-new-drug-trikafta-but-it-costs-470k-a-year.html

https://www.facebook.com/TheAMShowNZ/videos/2670601139860612/?epa=SEARCH_BOX

Keep up to date with campaign progress and ways to help by joining the Access for Aotearoa - Campaign for precision medicines for Kiwis with CF advocacy group and by liking the Trikafta For Kiwis community page.

Sarah Macdonald's involvement (page creator)

I'm Bella's Aunty. Our family is blown away at the kind and generous donations, we are forever grateful. We work towards getting Trikafta funded for all CF sufferers in Aotearoa/New Zealand and securing enough Trikafta for Bella in the future.

Use of funds

Funds will be used for Bella's ongoing Trikafta treatment.

Other page links


Latest update

The cystic fibrosis medicine that costs nearly $500,000 a year - and the global red tape that's strangling it  2 February 2021

Posted by: Sarah Macdonald

As the fight for funding TRIKAFTA continues so does Bell's story. Bella has had a summer full of fun, family and friends. If it weren't for all the wonderful people who have supported this page and given money, Bella's summer would have looked quite different! Until Trikafta is funded, she still need's all the support she can get.

We as a family are forever grateful to Paddy Gower and the power of his investigative journalism, he continues to push to reveal the TRUE story behind why drugs like Trikafta are so hard to fund here in Aotearoa.

Patrick Gower and Newshub will be running a three-story series speaking to New Zealanders with cystic fibrosis who have been able to privately access Trikafta.

Trikafta is a breakthrough treatment widely heralded as having the potential to turn cystic fibrosis from a life-threatening condition, to a manageable condition. It's currently not funded in New Zealand.

You can watch the interviews on Newshub Live at 6pm on Three, from Tuesday (2nd Feb) to Thursday. Patrick will also be on The Project on Tuesday to discuss it.

Read 8 more updates  |  Share this update


Latest donations

Jo
Jo 19 hours ago
$50
Joanne
Joanne 1 day ago
We love you Bella! Love from Ellie in 3D. xxx
Private
Deborah
Deborah 1 day ago
You are an inspiration. My baby boy was diagnosed with CF a month ago and I can only hope that he grows to be as strong and brave as you are; fighting for others as well as his own right to health. Love from Northern Ireland, where Kaftrio has recently been funded - keep campaigning! ❤️
$50
Catherine southwick
Catherine southwick 1 day ago
Sending love and light x
$50
LUCIA
LUCIA on 17 Feb 2021
Your are a brave young woman
Private

Who's involved?

Sarah Macdonald's avatar
Created by Sarah Macdonald
Alexandra Powell's avatar
Paying to a verified bank account of Alexandra Powell on behalf of Isabella Powell(Bella)

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This page was created on 3 Aug 2020 and closes on 27 May 2021.
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