This September, as we celebrate Sickle Cell Awareness Month, we find ourselves reflecting on our aspirations for the SCD community in terms of accelerating care, research and outcomes.

Looking back over the past twelve months, we are encouraged by the significant strides made by members of our team, ecosystem, clinicians and research partners in understanding the day-to-day experiences of those living with this condition. At the core of our mission has always been the drive to understand these experiences. This commitment fuels our ongoing collaboration with patient, clinical and research communities, as we work to support them in improving outcomes, understanding the causes of variations in patient well-being, and prevent deterioration wherever possible.

In the light of this, what has been encouraging for us to see is a growing emphasis on understanding the patient experience on a longitudinal basis; and the recognition that SCD is not a static condition, but one that fluctuates and sees variation in outcomes. This shift in perspective has been crucial in global efforts to capture the full spectrum of challenges and triumphs that SCD patients face throughout their lives. The emergence and approval of novel approaches, such as gene therapy in some parts of the world, have arisen out of the need to redress the genetic mutation of SCD, and to provide long-lasting relief from its varied manifestations.

Moreover, we’ve witnessed substantial efforts in accelerating access to much-needed therapies. For years, the SCD community has stressed the importance of ensuring all patients, regardless of socioeconomic status, have access to affordable and effective treatments that could significantly improve their quality of life and outcomes. We’re proud to have played a role, alongside industry colleagues and the wider SCD community, in making therapies like Voxelotor more accessible to patients through NICE approval. This achievement, driven by real-world insights and a deeper understanding of life with SCD, will have a significant impact on patients’ lives.

By adopting this long-term view, the SCD clinical and research community has developed more informed care approaches that are not only reactive but proactive – anticipating and addressing complications before they arise. We’ve been fortunate to collaborate with clinicians, research partners and numerous individuals within our ecosystem to develop truly supportive solutions for patients. Our AI-Driven VOC Predictor, for example, harnesses machine learning to forecast the likelihood of a patient developing a vaso-occlusive crisis (VOC). By understanding how variables such as sleep, activity levels, and hydration correlate with the emergence of VOCs, we hope our work with partners will enable patients to work more seamlessly with their care teams to anticipate and manage these crises.

Research in SCD over the past year has focused on understanding the patient experience at a granular level. Our Life Sciences and Research team has published abstracts on SCD management, social media listening insights on SCD treatment perspectives and responses, contributing valuable insights to the global scientific community at conferences like ASH, ASCAT and EHA. These abstracts have illuminated ways to improve current approaches to managing VOCs, enhanced our understanding of VOC prodromal phases, and clarified the physiological impacts on overall quality of life.

We are particularly proud of our annual Haematology Patient and Carers Congress, which brought together thousands of haematology patients, including hundreds of SCD patients. This congress provided a valuable opportunity for patients to interact with clinicians and members of the haemoglobinopathy community, fostering a deeper understanding of the patient experience and facilitating discussions on how patients, clinicians and systems can collectively improve care and support.

The insights gained from our interactions at the HPCC and beyond have not only shaped our research efforts but have also reinforced our resolve to push boundaries further. We shall continue to work hand-in-hand with patients, clinicians, industry partners and researchers to tackle the real-world challenges faced by those living with SCD. Our patient-centric approach will remain at the heart of all we do, driving us to develop more innovative solutions, advocate for better access to care, and ultimately strive for improved outcomes.

As we look to the future, we are energised by the potential to transform lives and are dedicated to ensuring that every individual with SCD has the opportunity to thrive. This SCD Awareness Month, we are working with the SCD community as partners, in our efforts to redefine what’s possible in SCD care and management. To learn more about our work, visit www.saniushealth.com or contact us at [email protected]