Sickle cell disease (SCD) is one of the fastest-growing genetic blood conditions in the UK. Over 15,000 people are affected directly by SCD, and approximately 380,000 people carry the sickle cell gene. RARE Revolution Magazine met with Orlando Agrippa, CEO of Sanius Health, to find out more about the challenges faced by the sickle cell disease community and how his company is addressing these

What is sickle cell disease and what drives you and your employees to improve outcomes in this disease area?

I was diagnosed with sickle cell disease (SCD) five years ago during a pain crisis so severe that I thought I was dying. Faced with really poor and inequitable care in a hospital in Europe, I wanted to change the world for patients like me so that they would have health equality, better access to care, better research and better outcomes overall.

I have since seen many SCD patients die because of complications, some of the most common being cardiovascular, respiratory and renal comorbidities. I believe that the only way to change this is by coming together as patients to accelerate research for new medicines and using data to change how we access care.

Data can provide evidence to caregivers about what has been happening to us between our contacts with them, and in some cases predict a vaso-occlusive crisis (VOC). Such data has a key part within truly personalised medicines, and providing it is our mission.

The team, some of whom have other rare diseases, all believe in this mission. Together, we believe that we can make a real impact and change the healthcare landscape for SCD and similar diseases, through scientific research, innovative technologies and engagement with fellow patients.

Vaso-occlusive crises (VOCs) are one of the most common and distressing symptoms of sickle cell disease. They happen when sickled blood vessels block blood flow in the bones. They can cause severe pain and last for up to 7 days on average. In addition to the pain itself, there may be serious clinical consequences, including acute chest syndrome, hepatic and renal involvement, cerebrovascular accident, and multi-organ failure.

The frequency of VOCs varies greatly, with some patients having one every few weeks and some having less than one a year. On average, there is one bad episode a year. The trigger for such episodes is not always clear; causes include poor weather, dehydration, stress or intense exercise.

Can you describe Sanius Health’s approach to improving outcomes and access to new medicines for people with sickle cell and thalassaemia?

When I was first diagnosed, my physician, one of the leading haematologists in the country, Professor Paul Telfer at Barts Health, told me that understanding what happens to patients between their appointments or contacts is a real challenge.

He said that if these experiences could be made visible, it would help clinicians support patients, through giving them pre-emptive medicine. That insight is a large part of how Sanius Health came about.

We just wanted to help patients and change their world. We didn’t want to make lots of money or anything like that. We wanted, and still want, to change care for patients like me—“our people”.

Through the use of advanced wearable technology, outcomes data, genetic data and integrated medical records, we are able to show clinicians exactly what has been happening to patients between contacts—from how much pain they are in and how they slept, to their SpO2 (blood oxygen saturation) level, heart rhythm, hydration levels, fatigue, psychological/mood score and more. This takes patients and clinicians beyond the 1% they currently understand about the SCD journey, and introduces them to the remaining 99%.

Patients are able to present this data to clinicians and say “I have been in a lot of pain and really need some support.”

Let me give an example. Only two days ago, and for the second time in more than thirty years, I had my second VOC. God, the thing was painful! I could literally not breathe. I checked my wearable and my blood oxygen level was down to the floor. My pain was 10/10.

Paul, who wasn’t working that day, got a message from me to say “it is happening and at a 10”. With the evidence from my wearable, I was able to immediately access care from my clinical team—now that’s a result, right? And we have countless other stories of this nature from doctors and patients. 

For new medicines we are really focused on supporting biotech and pharma to accelerate the development of new therapies. There is an urgency here as many patients continue to have poor outcomes due to a lack of options. Over the last year, we have worked with clinicians, patients, patient organisations and others to provide evidence that can support access to novel therapies within the early access to medicines scheme (EAMS).

This means that we can really see how new therapies are working for patients: we can see how the therapy affects their pain, symptoms, sleep, activity levels and overall quality of life, including any downsides, and generate evidence.

What we are doing from a research and data perspective is unmatched in sickle cell disease and we could not do it without our community. Our work extends to clinical trials and everything you can think of where data is being generated to provide demonstrable evidence to accelerate new therapies.

Our work extends beyond SCD into areas such as Fabry disease, thrombotic thrombocytopenia purpura (TTP), C3G (complement 3 glomerulopathy), amyloidosis, Waldenström macroglobulinemia (WM) and other debilitating long-term conditions.

September was Sickle Cell Disease Awareness Month. How did you leverage this to support patients, clinicians and the wider community?

As I write this I am somewhat overcome with emotion. On 15 September 2022, following months of hard work, we successfully launched the largest disease awareness campaign for sickle cell disease in the history of the condition, to celebrate world sickle cell awareness month.

The campaign has seen us focus on our key messages about health inequality, burden of illness and cost of living, all of which impact overall outcomes for patients. We and our passionate partners have launched over 350 billboards in the UK alone. That’s approximately 1 billboard for every 42 patients in the UK.

50% of patients most commonly treated for SCD live within the 50 most deprived areas of the country.

As we accelerate our awareness message of “this is what sickle cell looks like”, in line with the NHS campaign, our only hope is that we positively improve the life of at least one patient and educate the public about the condition and its impact on patients.

How else are you driving conversations around sickle cell disease and keeping the patient voice at the heart of those efforts?

I truly love every single one of the members on the Sanius platform and want to make sure their voice and the voices of patients around the globe are heard.

We have been doing so much for the last 24 months. Among other things, there have been patient awards, workshops, sponsored vlogs, podcasts, a massive social media push, and we have been encouraging patients to write to their MPs to raise awareness of the pressing issues around SCD.

A big thing for us has been working with many of the small patient organisations and the Sickle Cell Society to listen to patients to find a way to convert their collective voices into something which makes a real impact.

I will be the first to admit that we need to do even more. We have some really exciting patient-led programmes ahead and will be sure to let your readers know the impact we are having. 

How are Sanius Health’s partnerships helping to improve the lives of people with sickle cell disease?

There are so many patients like me doing amazing things and I want to thank them all: Charlie B, Khendie, Chanel, Jenica, Asitu and others. Together we can make the world a significantly better place for other patients.

My team and I know healthcare, technology, research and science, so those are the ways we have approached the challenge of improving the lives of people with SCD.

Along with a team of some of the best clinical leaders in the space, we have partnered with Oxford University Hospital; London North West University Hospital; Barts Health, Bristol; Imperial College London and others to accelerate routes to better access, care and outcomes through patient-centric, clinically led research. This is one way we can demonstrably improve patients’ lives.

We are also doing some amazing stuff in gene therapy, which I’ll tell you about next time.

What would your wish be for November 2023, the two-year anniversary of the No one’s listening report?

My wish for November 2023, the two-year anniversary of the No one’s listening report, would be that free NHS prescriptions are made available to the many SCD patients who need them.

By then we will be working on a confidential programme with an amazing industry partner to perfect our predictive AI. This will better predict when a patient is having a crisis (a VOC). This will really help reduce end-organ damage for patients, and we hope it will decrease hospitalisation too.

Already we have seen an increase in quality-of-life scores for 78% of the patients who engage most with our app, with a parallel fall in recent admissions.

Additionally, by November 2023 we will have started to make a dent in the stark issue of health inequality. We really need this to be dramatically improved for patients.

Links

whatscdlookslike.com

saniushealth.com

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