Organising works! Orkambi to be made available on the NHS
Just Treatment has worked with a fantastic and dedicated group of parents of children with CF for over a year. In that time we have transformed the debate and piled the pressure onto Vertex and the government to take action that puts lives over profit. Below Christina, one of the parents we've been organising alongside, describes what today means to her and countless other families.
Christina and Luis on Victoria Derbyshire
Today I have more hope for the future than ever before. After four long years we finally heard the news today that we’ve been waiting for - the cystic fibrosis drug Orkambi will be made available on the NHS in England!
A deal struck for the three drugs Orkambi, Symkevi and Kalydeco has just been announced for England - and we very much hope that Wales and Northern Ireland will follow soon. Patients like my son Luis should be able to access Orkambi by Christmas, which will be the best present we could have wished for.
“Finally, four years after Orkambi gained regulatory approval, it will be available to patients in England who so desperately need it.”
This is a wonderful and emotional day for patients, their families, and all those who have campaigned to make these drugs available. Finally, four years after Orkambi gained regulatory approval, it will be available to patients in England who so desperately need it. But there is a sadness to the day too, as we know that hundreds of patients have died waiting for Orkambi as for nearly four years, pharma company Vertex refused to offer a fair price to the NHS.
So while we’re celebrating today, we are also hopeful that lessons will be learnt. Companies like Vertex cannot be allowed to hold patients’ lives to ransom by charging sky-high prices that the NHS simply cannot afford. While Vertex CEO Jeff Leiden was boasting about how the company had a “nice problem of accumulating cash very rapidly”, kids like Luis were denied the treatment they needed because of Vertex’s refusal to offer a fair price.
“Companies like Vertex cannot be allowed to hold patients’ lives to ransom by charging sky-high prices that the NHS simply cannot afford.”
We’ve campaigned long and hard for this day. We’ve been in the press, we’ve lobbied politicians, we’ve marched and written letters and made videos. Alongside other parents, I even helped set up a cystic fibrosis buyer’s club to support patients in the UK in buying unpatented versions of Orkambi and Symkevi from overseas.
It’s been a long journey for so many of us, and I know that Luis will be relieved not to have to campaign any more! Today we are full of hope for the future, and we hope that this campaign will be a lesson for others, so that one day soon no-one will have to wait so long to access the medicine they need.