Access to life saving medication for Juliet Hubbard
We want to save Juliet’s life by raising funds to help her buy the only cutting edge medication that will save her life – Trikafta.Nationwide
Juliet Hubbard is a 35 year old woman in New Zealand who has Cystic Fibrosis and is dying. The hope of a lung transplant has been ripped away from her due to other medical complications. Now facing a very short life on oxygen 24/7, her husband has given up work to care for her until such time as she passes away.
However, there is hope for Juliet - there is a new medication called Trikafta, which is manufactured by Vertex Pharmaceuticals. Trikafta is a miracle drug and can save Juliet's life and give her more time with her husband, family and friends, but most of all, a better quality of life. The medication is $495,000NZD per year and is her only hope right now.
Vertex have provided Trikafta to other sufferers across the globe in similar situations, on a compassionate basis. Disappointingly, Vertex have refused compassionate access to Juliet because she lives in New Zealand - this is essentially because New Zealand is unlikely to provide access to this medication in the near future due to how we drag our feet with the funding of other new medications. Vertex have stated that they will not provide compassionate access to those who are unlikely to receive funding for the drug in the short to medium term. As such, we have started a petition to Vertex which you can also sign http://chng.it/LR4xWthPqC
However, because Juliet’s need is so immediate, we are calling on the public and their humanity to save Juliet's life. We aim to raise enough funds to provide Juliet with one year of Trikafta so that she can get her health to a point where she can look at other options, or until such time as Vertex will reconsider their compassionate access scheme.
Should Juliet pass away before the funds can be raised, any funds raised will be used to help her husband cover funeral costs and the remainder donated to a fund where upon other Cystic Fibrosis sufferers can be aided in purchasing unfunded medications to save their lives.
Steph Kavanagh's involvement (page creator)
We are great friends in a mutual fight against cystic fibrosis
Use of funds
Funds raised will be used towards the purchase of Trikafta for Juliet. If she passes away before such time, any funds raised will be used to help other Cystic Fibrosis sufferers buy unfunded medication to save their lives.
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This page was created on 11 Mar 2020 and closes on 11 Mar 2021.