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Feature: What sickle cell disease looks like and its impact on health inequalities

Feature by Sanius Health – the company behind the integrated Sickle Cell Disease patient and research platform

Understanding the burden of illness can be extraordinary. But for many rare and debilitating conditions, like Sickle Cell Disease, the burden of illness and its link to health inequalities impacts 15,000 people in the UK, with real implications for the NHS.

Speaking to over 300 patients who have shared their stories with us, the burden of illness in their lives means facing multiple end-organ damage, significant issues with psychological health and living every day with excruciating pain.

The term ‘burden of illness’ varies in its meanings for patients. Hundreds of patients have described their burden of illness as the inability to ever have the opportunity to live a normal and pain-free life, without anxiety or limitations.

For the research, clinical and scientific community, an understanding of this would provide a valuable, complementary vantage point; in that many clinicians globally and around the country sadly see patients in emergency rooms, clinic hallways and in hospital beds, who experience the sharper end of pain, sadness and limitations to do some of the most basic of activities.

Let’s take Hannah Balogun. Hannah was born with Sickle Cell Disease. She is an aspiring actress, and has plans to go back to school to hone her craft. More than anything, she is passionate about creating art; her dream is to act, write, and produce films that will inspire many.

However, over the years, Hannah’s condition has caused her to miss out on opportunities that could have supported her dreams. Earlier this year, she was invited to take part in a production that would debut at one of the UK’s most prestigious theatre festivals. Many acting heroes had made career-defining appearances at the festival, or were even discovered by industry greats there. Hannah wanted to follow in their footsteps; however, due to her SCD disease and her having a crisis, she had to miss out.

“I was cast in a show that was going to be adapted for the festival. I was really excited because I have never been before. But before we began workshops and rehearsals, I started to feel unwell so I told the producers that I wasn’t feeling 100 percent. I wanted to let them know in advance, just in case.”

“I received a message from my producer, who asked to speak to me on the phone to check in. When I told her my situation, the producer tried to tell me that it would be fine, and that I could participate. But the next morning, less than 24 hours later, I was told that I had been recast from a main role, because I was ill.”

Missing out on birthdays, family events and what could have been a life-changing debut at the festival – this is what Hannah’s burden of illness looks like.

For Dr. Sanne Lugthart and Dr. Wale Atoyebi, consultant haematologists at University Hospitals of Bristol and Oxford University Hospitals respectively, this issue translates into the ‘personal and societal burden’ that patients carry –  as well as limitations in the ‘attention and resources’ that they receive. Dr. Ateyobi, also an Honorary Clinical Lecturer at the University of Oxford, says: “Compared with other genetic disorders, SCD has received relatively little attention and resources. In the UK, a recent all-party parliamentary group on SCD and Thalassaemia report highlighted that 40 percent of patients with SCD fear going to hospital due to poor standards of care, discrimination and a lack of respect.”

As a result of patients’ burden of illness, clinicians have seen “poorer health, reduced quality of life and early and preventable death in SCD”. Dr. Lugthart adds: “The burden of illness that patients carry, including existing inequalities, and what connects them…results in an increased risk of worsening outcomes. Failure of care and health inequalities, such as deprivation, low income and poor housing have always meant poorer health for the SCD community, and low quality of life.”

To shed light on experiences like Hannah’s and the SCD community’s, we’ve partnered with Global Blood Therapeutics and patient organisations like the Sickle Cell Society, to not only drive further awareness but to bring change around the burden of illness. By working with patients, organisations and healthcare professionals, Sanius Health’s billboard campaign hopes to spread awareness on Sickle Cell Disease across the UK and beyond.

For more information on what you can do learn more about or engage in research, visit our page by clicking here.

If you would also like to get involved with supporting the SCD community, feel free to contact us as info@saniushealth.com