Bec Gullo

[Bec Gullo @BecGullo]

The PBAC meet tomorrow to decide the fate of hundreds of Australians with cystic fibrosis. Orkambi will be either approved, or not- like many times already. Know this: we will not stop until our loved ones have access.
#orkambi #orkambinow #orkambifortheo

[Bec Gullo @BecGullo]

@TheCarersPlace_ Great news!!! Hope all goes smoothly, very excited for you all x

[Bec Gullo @BecGullo]

I think stats in Australia would be similar - the benefits of #Orkambi reach further than the patient @GregHuntMP - Orkambi for Australians = less admissions = less physical and mental health issues for carers #publichealth #cysticfibrosis #australia https://t.co/9HCOtEAOgw

[Carers UK @CarersUK]

New research for #CarersWeek finds the physical & mental strain of caring is jeopardising unpaid carers’ ability to care in the future as over half of #carers in the UK said they expect their physical (58%) and mental (57%) health and well-being to get worse in the next 2 years.

[Bec Gullo @BecGullo]

@darrenhayes ❤️

[Bec Gullo @BecGullo]

@VertexPharma Clearly the importance of starting treatment as early as possible has been overlooked in Australia, or negotiations would have been finalised years ago- and my son would already be receiving Orkambi. Adding years to his life is not as important as profits and share prices.

[Margarete Cassalina @MargCassalina]

“Unless someone like you cares a whole awful lot, nothing is going to get better. It's not.” -Dr. Seuss, The Lorax #MakeAdifference #CureCF

[WeNeedOrkambi @OrkambiAus]

3000 comments were submitted to the PBAC by this morning! But there's still time if you've been meaning to submit - extended until midnight tonight #WeNeedOrkambi #LastChanceToSubmit https://t.co/dyPMD7kPXS

[Jillian McNulty @jilli09]

In Feb I was sent for transplant assessment after flu lung functions at just 17% lung functions today 49% this is in no doubt down to orkambi @strawfie @OrkambiAus Wake up @NHSEngland @GregHuntMP @adriandix & make Orkambi available it has the potential to SAVE lives #orkambi #cf

[Christina Walker 💙 @Guatemalagirl]

#BIO2018 @VertexPharma prioritise Worldwide patient access to your medicines - morally you know you must. People are dying while you haggle over prices #OrkambiNow #cysticfibrosis

[Quest For A Cure @CFQuestForCure]

@Jeremy_Hunt @NHSEngland here’s what actually happens when CF patients receive these precision drugs before it’s too late! #OrkambiNOW #SymdekoNext #CysticFibrosis https://t.co/YYR7TvGlOb

[WeNeedOrkambi @OrkambiAus]

People born with CF in the US are predicted to live 10 years longer than those born in Aus - main difference is faster access to better meds #NotGoodEnough #WeNeedOrkambi @GregHuntMP @TurnbullMalcolm

[Lisa Green @lisagreentweets]

.@VertexPharma Today I made my submission to the PBAC trying to justify why my husband's life is worth the price you've put on a drug you're already making profits from. Help a lady out by doing the right thing and reducing the price of #Orkambi to ensure it gets listed this time

[Strawfie Challenge @strawfie]

Keep sharing all #Orkambi posts - Our voice is being heard - we just need to keep the pressure on all round #OrkambiNow #cysticfibrosisawareness #cysticfibrosis #JustBreathe #CFAware #CFTrust #CFFoundation #CanadaNeedsOrkambi #WeNeedOrkambi #Lungs #breathe #65Roses https://t.co/LaTeMf7606

[WeNeedOrkambi @OrkambiAus]

Last day to submit comments! Please help the 1300 Australians waiting for Orkambi by submitting comments by 5pm - more info here -> https://t.co/OIlqy2FObt #WeNeedOrkambi

[Emmah Money @CF_Mummy]

#WeNeedOrkambi

[Strawfie Challenge @strawfie]

Hannah has been on compassionate #Orkambi since November 2017. Her lung function went from 20% to 59% in two weeks. She has maintained at around 50%. What have you decided today @VertexPharma & @NHSEngland? We need #OrkambiNow https://t.co/3FEM3c1Svo @CFAware
@cftrust @myCFHero

[Aleta Gibbs @leta70]

More sales with lower prices = same revenue with less suffering #LivesBeforeProfits #weneedorkambi @VertexPharma

[Bec Gullo @BecGullo]

@GregHuntMP Why are Australians still waiting for Orkambi?!? #orkambi #orkambiforaustralia

[Bec Gullo @BecGullo]

@GregHuntMP I would’ve not renewed my policy years ago but my son with cystic fibrosis needs it- already had to have enteral button surgery privately. We don’t live week to week, we live day to day.