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20 Jan
Advocacy

Optimistic on Orkambi

20 January 2020

Sonia Marshall, whose daughter Evie has experienced spectacular improvements in her health since starting the cystic fibrosis medication ‘Orkambi,’ spoke at the CFNZ office in December 2019.

“Its life changing. There are no words, really. We are so incredibly lucky,” said Sonia.

Evie’s lung function improved from 80 to 100% within six weeks of starting Orkambi. Other changes included no longer needing insulin for CF related diabetes. Her enzymes became normal.  Overnight feeds became a thing of the past due to Evie enjoying food and eating well, and her weight increased 5 kg.

She used to take 44 tablets per day. She now takes hardly any. She does not need salt tablets and fat intake has been halved to 10g.

While Evie experienced some side effects, they had disappeared within three weeks.

Orkambi is unfortunately not approved for use in New Zealand yet. Sonia encouraged starting a campaign to change this.

She outlined the gruelling but successful campaign run by CF Australia to get Orkambi approved. On 17th August 2018, after being rejected three times due to cost, it was finally approved for use in Australia.

It was like winning the lottery for the rest of your life, said Sonia, and some people might have another 20 years of life.

The “magic pink pills,” as she called them, cost $6.50 Australian dollars.

Although the campaign was hard, Sonia said it was worth every minute due to the effects it will have on peoples’ lives.

Key points in the success of the Australian campaign for Orkambi:

  • No more than five key messages, so people could remember them
  • Media played a key role. Turning point in campaign was hitting national media and getting nationwide coverage
  • Got the story out there: needed people to tell their stories to the media.
  • contacted local TV stations, newpapers
  • Were respectful to people they were targetting
  • Arranged protests, e.g. stood outside Parliament, gave cupcakes and cups of tea for Parliamentarians who came
  • Social Media e.g. Sonia described “the post that broke the FB app on my phone!”

When received 26,000 shares within 24 hours

  • Kept fighting, even though it was hard, for example, Sonia dropped her job to part-time
  • Made it into human rights issue. Didn’t advocate on economic grounds as government bureaucrats could argue the point better.


A huge thank you to Sonia for visiting us and for sharing the impact of Orkambi on Evie and your family. If you’d like to get involved with our advocacy efforts, contact ceo@cfnz.org.nz.

 

Watch Sonia's talk from December 2019, here:

 

Written by Anita Divers.