In a five-year campaign, we secured Sarah’s CF wonder drugs and exposed flaws in a system that left her waiting 16 times longer than the average for a liver transplant.
She had been sent to the back of the queue because of how NHS Blood and Transplant’s algorithm “scored” her rare combination of genetic and debilitating conditions.
It meant she had to wait 26 months for her life-saving transplant instead of the average 47 days.
Sarah, 31, wrote an open letter to Health Secretary Steve Barclay this summer highlighting the injustice but, despite repeated requests from us, he did not reply.
Finally, last month she was allocated a liver and is now recovering at home in Cambridge after surgery at Addenbrookes Hospital.
She said: “Progress is good, and a huge relief after waiting nearly two and a half years on the list.
“There will never be enough words of gratitude to repay those who made this possible, especially my donor and their family. They will always be in my thoughts. I also want to thank the Daily Express who have highlighted my case and fought for me all these years.”
Her sister Jess, 36, said: “Sarah’s transplant means I can now look forward to life with my young sister. I’m forever grateful.”
CF is a genetic condition affecting 10,700 in the UK whose organs are slowly destroyed by sticky mucus. But 90% can potentially thrive with the Kaftrio pill which the Daily Express successfully campaigned for.
Sarah joined the transplant list in July 2021 with a failing liver, yet Transplant Benefit Score (TBS) algorithms, created in 2018, penalise young patients like her with genetic-linked rare forms of liver disease.
Sarah also has a rare genetic condition AATD, causing additional lung and liver problems. Her portal vein failure was not recognised as a negative factor by the algorithm. And her liver was too frail for a biopsy to confirm a new lesion was cancer.
Last year we told how MPs had urged updates to the algorithm as it still uses survival data from before Kaftrio was available.
With 700 people waiting for a liver, NHSBT says difficult decisions have to be made and the system is still saving lives. Sarah’s mum Cathy, 68, said: “Our criticism is with statistics and data, not NHSBT.”
