In December 2018 my little sister Kate was diagnosed with an extremely rare form of cancer at the young age of 27. It is a form of liver cancer called Fibrolamellar which effects children, teens and young adults. It is so rare it effects less that 1 in 5,000,000. world wide.
Kate underwent major surgery in February removing a majority of her liver. She now needs access to a licensed treatment called Atezolizumab, which is where we run into problems because, although licensed, Atezolizumab is not licensed for her specific cancer.
Atezolizumab costs €5,845 per vial. Kate will need one vial every 3 weeks for the next two years. This will be at a personal expense to us.
The HSE have not been responding to our cries for help. They do license this drug for some cancers, but because Kate's cancer is so rare it is not covered. We have been begging for an exception but our cries have been going unanswered by the HSE and by the Minister of Health.
Through out all of this Kate has kept so positive and her energy is what has gotten everyone through. Please help keep her going.
We will continue our fight with the HSE and hopefully this will help future Fibrolamellar patients gain access to this life saving drug and also to stop our health system been divided into a three-tier system.
We would like to thank all our friends, family and neighbours for all the support we have received since we were hit with this life changing news in December.