We are deeply shocked and extremely disappointed by Pfizer’s sudden decision to withdraw Voxelotor (OXBRYTA®)  from the NHS in the UK, and across the world. We were given no warning.

As an organisation that has tirelessly fought for the approval of new treatments for sickle cell disorder (SCD), this news is devastating for the community we represent, and the people who rely on Voxelotor (OXBRYTA®) to improve their quality of life. It is inexcusable that the doctors and nurses who treat people with sickle cell every day have woken to this sudden, demoralising news.

The withdrawal of Voxelotor (OXBRYTA®) is a significant blow, particularly given that it follows the removal of Crizanlizumab earlier this year, leaving patients with even fewer options to manage this painful, life altering, and debilitating condition.

The condition is already severely underserved in terms of treatment availability, and for those living with sickle cell, the loss of two new therapies in such a short space of time is simply reprehensible. Today’s news effectively wipes out 20 years of progress in developing new treatments for sickle cell disorder.

We understand that patient safety is paramount, but the lack of new, effective treatments for SCD over the past two decades has made it incredibly difficult for patients to manage their condition.

Crucially, along with our clinical colleagues, we have not been afforded the opportunity to fully understand and discuss exactly what the safety issues are in this case.

For many, Voxelotor (OXBRYTA®) offered hope. The sudden loss of this option leaves us, once again, in a position of having to fight for better care and treatment options for our community.

We strongly encourage all patients affected by this withdrawal to contact their health carers for guidance on next steps.

This is a difficult time for us, and our community, but we remain committed to fighting for the treatments and care that people with sickle cell disorder deserve.