Getting requests for my daughters extra #Symkevi tablets via social media. I’m so sorry other countries don’t have access. We need equitable access to precision meds. The prescriptions are precise, we don’t get #kaftrio until all tablets are used. She hasn’t started yet.
#CF #cysticfibrosis community - anyone got a good list/info graphic of which foods have 10g of fat in to take #symkevi #kalydeco with? Daughter eats so little (aged 8) & not gained any weight in one year. Trying to feed her v difficult, even with supplement drinks #cfaware
A day to be truly grateful #Symkevi #Kalydeco #cysticfibrosis #NHS #PrecisionMedicines for my 8yr old. One of a v small number of patients approved for this medication recently just licensed down to age 6. Thanks to all who campaigned for Orkambi as because of that she got this
5 weeks until my daughter starts #symkevi & #kalydeco from @VertexPharma #precisionmedicines #cysticfibrosis
Life changing year for her, despite not having a hospital for 1 year. What with Bluetooth spirometry, home phlebotomy visit her CF care is improving fast.
Very excited that my hubby @DrPaul_Watson will CCT this year. One of us finally completing training at least! Number 2 child will graduate university. Number 4 child should hopefully get #symkevi medication
Has @VertexPharma applied to EMA for #Symkevi marketing authorisation for less than 12 years of age yet? US FDA allows aged 6 and over. Waiting a further 5 years for access to this drug seems cruel. Can access to #Trikafta be speeded up seeing as the drug is so good? @cftrust
So we got our letter from the #CF team saying our 6 year old isn’t eligible for the #Orkambi or #Symkevi. She will be when she’s 12. Hard to read. Six years seems like ages. @NICEComms isn’t looking at #Trikafta until 2021. These timings are too long for a progressive disease
We are so happy for the #CF community. This is the face of a girl who has been given a brighter future. Almost. #Symkevi licensed for 12 & over. We shall wait until she gets it. Thank you #facesofCF
Constant campaigning & seeing what is right & moral #Orkambi
Dum Spiro Spero
