An Interview with Dr. Sanne Lugthart

Having treated rare haematological disorders for over a decade, Dr. Sanne Lugthart is one of the few people who truly understands the reality of living with Sickle Cell Disease (SCD).

As a haematologist, health practitioner and friend to the SCD community, Dr. Lugthart is more than a clinician to the people she treats. She is a confidante and an ally to her patients; many of whom she has known from birth, and some she has seen grow into adulthood. Having been connected to so many of her patients since childhood, Dr. Lugthart is passionate about seeing further innovation and care being directed at SCD.

However, given current care and social inequities, the health landscape feels bleak for her patients and other specialists like her.

For the first time in three years, this summer saw the reinstating of historic, celebratory events. Millions of Londoners spilled through the streets of Notting Hill and Oxford Circus, to celebrate their newfound freedom in multicolour, proud unity.

While the general public gathered with little no fear, the Sickle Cell Disease (SCD) community and their clinicians watched with trepidation as prescription prices continued to rise and care access became more impenetrable. Under the current cost of living crisis, care for SCD is not cheap. The jury is still out on whether this year will truly see positive change for the SCD community, given that many who need these expensive treatments are on the fringes of a healthcare system that already marginalises them.

For the majority, sober reassurances from the Cabinet were enough to quiet fears regarding safety, care access and health inequalities. Many have been placated by the new Health Secretary’s pledge to address these issues by recruiting 25,000 healthcare workers, opening 50 surgical hubs and planning for an additional 2 million procedures. Frontline healthcare professionals, especially those caring for patients with rare and chronic conditions like SCD, know that in reality, these promises barely scrape the surface of what is needed.

Leading clinicians like Dr. Sanne Lugthart had hoped that the re-opening of public services and the long-awaited publication of the No One’s Listening report would spur much needed conversations around the condition and care equity. Despite positive media attention and the House of Commons debates inspired by the report, patients and clinicians like Sanne are still waiting for much needed change.

Although Sanne and other clinicians are hopeful, many of the government’s pledges do not cater to the very specialist and personal needs of SCD patients. 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. Dr. Lugthart is optimistic that the SCD clinical community’s efforts to join up specialist care will spark needed improvement; but warns that this is just the first step of a needed million to take.

“It has taken some time for healthcare to recognise that we need specialist and expert care to treat Sickle Cell Disease patients. 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.

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.”

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. All patients, regardless of race or background, deserve access to the best possible care for the disease they’re battling. 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.”

Despite yearly advances in many other disease areas, it has taken healthcare 20 years – just over 7,300 days – to finally develop a new treatment for Sickle Cell Disease. Millions of patients and clinicians in the SCD community felt that with the recent announcement of novel treatments, things were finally starting to change. Optimists in the healthcare community saw the emergence of progressive medicines and gene therapies holding promise in prolonging life, and even preventing long-term complications and end-organ damage. 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.”

The rolling trauma of the pandemic has made addressing health inequalities around SCD more difficult. Certainly, its effects still loom large for the SCD community, as seen in the way that many patients struggle to navigate the most basic avenues of care. Although new treatments do exist, their utility is close to negligible if the people who need them most cannot access them. If our experience with treating SCD during COVID-19 has revealed anything, it is that developing new treatments and reaching those in need are two separate missions. Sickle Cell Disease treatments can require month-long hospital stays, hyper-specialised care and the trust of communities that have been neglected across generations.

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 adds:

“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.