A quick recap
Last month, we focused on sickle cell awareness in the media through our comparative work using Google Trends and Netflix’s Supacell.
What have we been up to this month?
This month, we continue our theme on awareness for Sickle Cell Awareness Month and discuss the Pfizer’s withdrawal of Voxeletor which had been approved for NHS funding in May 2024.
1. Sickle cell awareness month
September was National Sickle Cell Awareness Month dedicated to raising awareness and advocacy for sickle cell. You might have been involved by attending sickle cell events, fundraising to support people living with sickle cell, sharing posts on social media and raising awareness with your friends and family.
This month, Fred attended the premiere for the SICKLE docufilm, in which he is featured. The film discusses the history and impact of sickle cell disorder and was presented by the Red Cell Network in partnership with Black Thrive Haringey. It was a great opportunity to hear more about the lived experiences of many patients who attended the event. Further screenings will be announced soon.
Rutendo attended a talk by the Imperial As One network, a network for ethnic minority staff and students at Imperial, where Baba-Jallah Epega, founder of the Richard Coker Foundation and Patrick Ojeer, chairman of the West London Haemoglobinopathy Coordinating Centre Patient and Public Voice group, talked about their experiences in sickle cell advocacy.
2. Pfizer withdraws voxelotor (also called Oxbryta)
On 25th September, Pfizer announced its decision to withdraw voxelotor from all markets worldwide including in the UK. This news, following the withdrawal of another sickle cell treatment, crinzalizumab, in January 2024, is very disappointing especially to people living with sickle cell who have very few treatment options. The Sickle Cell Society published their statement regarding this news.
This decision further highlights the lack of treatment options for people with sickle cell and has certainly been a huge source of frustration for the patient community, as well as haematologists.
3. Conference
Fred attended the 2024 International Conference on Sickle Cell Disease in Chandrapur, Maharashtra, India. The focus of the conference, organised by the Indian Council of Medical Research, was on the management and prevention of sickle cell. It was also an excellent opportunity to find out more about the National Mission on Sickle Cell Anaemia which was launched by the India Government in the summer 2023. Since then, more than 40 million people have been screening for sickle cell across India.
4. Patient engagement work
As part of our project funded by the NHS Race & Health Observatory, we are planning online workshops and a short survey, developed in collaboration with the Sickle Cell Society and the Ethnicity & Health Unit, to find out about your day-to-day experiences of inequalities in the management of sickle cell.
We want to hear from you. We will explain in our next post how people with sickle cell and/or their carers can participate in our online workshop and survey so keep an eye out for this!
See you next month!