Sickle Cell Disease: Clinician Dr. Sanne Lugthart Speaks on Need to Accelerate Better SCD Care  

For the Sickle Cell Disease (SCD) patients she treats at University Hospitals of Bristol, many of whom she has known from birth, she is a confidante and ally. She has seen many families come and go from her clinic, and is passionate about ensuring that her patients grow to live successful, fulfilling and pain-free lives. 

However, given the current healthcare climate, Dr. Lugthart worries that accelerating SCD is not happening fast enough. In the most frank terms, decades of ignorance and silence around SCD have precluded the development of specialist care strategies needed for this patient cohort. 

Although Dr. Lugthart is optimistic that the SCD clinical community’s efforts to join up specialist care will spark needed improvement, she warns that this is just the first step of a needed million to take.

“Historically, and with good intent, patients in this community have been managed by various different specialties with varying degrees of success. This has meant that short-term care has been focused on, instead of long-term complications like end-organ damage. Thankfully, we are now moving towards patients being treated by a more focused and specialised group of doctors to oversee the care of these complicated cases.”

Until very recently, SCD patients have received little in the way of attention, research funding or investment, which has created massive barriers to care access. To this day, there are only a handful of available drugs to treat the disease and very few doctors willing and able to confidently care for these patients. Sanne adds:

“Due to the complexity of the disease, this has been previously difficult to navigate, so having a dedicated network within the NHS and the national haemoglobin neuropathy panel have been a welcome change. In my opinion, this has worked very well. But we still have a long way to go for the rest of healthcare to learn what we now know about Sickle Cell Disease, and this will only come with increased awareness.”

Clinicians like Dr. Lugthart, who are pioneering new ways to ensure that SCD patients receive the care they deserve, still see impenetrable barriers to the work they are pursuing. The foremost being the lack of awareness and education around Sickle Cell Disease. 

“It is so important to talk and keep talking about conditions like Sickle Cell Disease. Because we need to inspire healthcare professionals outside of the Sickle Cell Disease community to learn more about it – especially if they’ve never worked in this area. If people know about Cystic Fibrosis, why don’t they know about Sickle Cell Disease? Doctors and students in medical schools need to start learning and addressing the condition from the ground level, to ensure that future generations of clinicians are equipped with the knowledge to provide all-encompassing care.”

For many, advanced technologies we now see are poised to make Sickle Cell Disease not only treatable, but curable. However, as clinicians on the frontline of SCD care will tell you, creating advances in technologies is only one part of delivering life-changing medicine. 

Dr. Sanne believes that unless we see a consolidated effort to make Sickle Cell Disease more visible in the public eye, the community will continue to suffer. 

“Things are starting to change and initiatives are beginning to be implemented. However, if you look into the history of Sickle Cell Disease, this is not the first time that issues around health inequalities have been raised. This can be very frustrating for the patients, and the teams working with these patients. Because we’re all very driven to see and make a difference, it is disheartening to see that numbers and patient outcomes are not improving fast enough.”

If we truly want to improve Sickle Cell Disease care for the better, we need stronger commitment from every part of our healthcare system; both in terms of expertise and innovation. Dr. Sanne Lugthart emphasises that the first step to accelerate SCD patient health outcomes is to first raise awareness around the condition. With keener focus and higher ‘visibility’, she is certain that health systems can work with patients to shed light on needed innovation:

“The key issue here is more awareness and visibility. What we need is a way for clinicians and patients to keep track of their health on a daily basis. We need technology that can help us understand the disease better, and to help us intervene earlier. This will also help non-specialists who encounter patients understand their condition at a deeper level; and empower patients when they approach professionals with a health event”

This September, for Sickle Cell Disease Awareness Month, it is time for all members of the clinical community to harness emerging conversations around the condition. It is only in partnership with experts like Dr. Sanne Lugthart, members of the SCD community and patient-driven ecosystems like Sanius Health, that hopes of improved SCD care will become a reality. 

Learn more about raising awareness around Sickle Cell Disease this September, by accessing Saniu Health’s campaign site: https://whatscdlookslike.com/