Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if he will make an assessment of the adequacy of the present system for calculating the Transplant Benefit Score in the context of the potential increase in life expectancy for UK Cystic Fibrosis sufferers following the introduction in the NHS of elexacaftor-tezacaftor-ivacaftor triple combination therapy (Kaftrio).

NHS Blood and Transplant constantly reviews the data around the National Liver Offering Scheme (NLOS) and Transplant Benefit Score (TBS) through the NLOS monitoring committee which is a sub-group of the Liver Advisory Group (LAG). Changes are made as required to ensure the right patients benefit at the right time. NLOS was updated on 4 October 2022 and the monitoring group will be reviewing the impact of these changes.

The severity of the liver disease, rather than the underlying cause, is what determines whether a patient will be listed for liver transplantation. Minimal listing criteria need to be met, in combination with the patient’s overall fitness and capability to successfully undergo a transplant procedure. Patients with cystic fibrosis (CF) will be assessed for liver transplant in exactly the same way as a patient with another liver disease, with blood and other tests plus clinical assessment by a multidisciplinary team.

Long term data showing Kaftrio therapy leads to reduced liver disease is not yet available. While improved outcomes for CF patients with this new treatment would be very welcome and may lead to more patients being eligible for liver transplant in future, it is not likely to make a significant impact on the existing offering process, which focuses on disease severity and predicted transplant benefit more than the underlying cause.