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September – Sickle Cell Awareness Month

A quick recap

Last month, we focused on sickle cell awareness in the media through our comparative work using Google Trends and Netflix’s Supacell.

What have we been up to this month?

This month, we continue our theme on awareness for Sickle Cell Awareness Month and discuss the Pfizer’s withdrawal of Voxeletor which had been approved for NHS funding in May 2024.

1. Sickle cell awareness month

September was National Sickle Cell Awareness Month dedicated to raising awareness and advocacy for sickle cell. You might have been involved by attending sickle cell events, fundraising to support people living with sickle cell, sharing posts on social media and raising awareness with your friends and family.

This month, Fred attended the premiere for the SICKLE docufilm, in which he is featured. The film discusses the history and impact of sickle cell disorder and was presented by the Red Cell Network in partnership with Black Thrive Haringey. It was a great opportunity to hear more about the lived experiences of many patients who attended the event. Further screenings will be announced soon.

Rutendo attended a talk by the Imperial As One network, a network for ethnic minority staff and students at Imperial, where Baba-Jallah Epega, founder of the Richard Coker Foundation and Patrick Ojeer, chairman of the West London Haemoglobinopathy Coordinating Centre Patient and Public Voice group, talked about their experiences in sickle cell advocacy.

2. Pfizer withdraws voxelotor (also called Oxbryta)

On 25th September, Pfizer announced its decision to withdraw voxelotor from all markets worldwide including in the UK. This news, following the withdrawal of another sickle cell treatment, crinzalizumab, in January 2024, is very disappointing especially to people living with sickle cell who have very few treatment options. The Sickle Cell Society published their statement regarding this news.

This decision further highlights the lack of treatment options for people with sickle cell and has certainly been a huge source of frustration for the patient community, as well as haematologists.

3. Conference 

Fred attended the 2024 International Conference on Sickle Cell Disease in Chandrapur, Maharashtra, India. The focus of the conference, organised by the Indian Council of Medical Research, was on the management and prevention of sickle cell. It was also an excellent opportunity to find out more about the National Mission on Sickle Cell Anaemia which was launched by the India Government in the summer 2023. Since then, more than 40 million people have been screening for sickle cell across India.

4. Patient engagement work

As part of our project funded by the NHS Race & Health Observatory, we are planning online workshops and a short survey, developed in collaboration with the Sickle Cell Society and the Ethnicity & Health Unit, to find out about your day-to-day experiences of inequalities in the management of sickle cell.

We want to hear from you. We will explain in our next post how people with sickle cell and/or their carers can participate in our online workshop and survey so keep an eye out for this!

See you next month!

August – A focus on awareness

A quick recap

Last month, we provided an update on our research and highlighted the national blood shortage.

What have we been up to this month?

This month, we discuss our work examining trends in sickle cell awareness over time and the hit Netflix show Supacell.

1. Using Google trends as a measure of disease awareness

As part of our comparative work on inequalities in sickle cell compared with cystic fibrosis and haemophilia, we are using Google Trends to explore interest in google searches for the three conditions between 2010 and 2023 in the UK. Our results will show how interest in sickle cell has changed over time and which condition is most frequently searched for month by month. These trends may be a proxy for awareness of these conditions within the general public, in parallel with our analysis of hospital admission data and other indicators of inequalities. Spikes in searches may coincide with key events or media highlights related to each condition.

2. Netflix raising awareness for sickle cell

On 27th June this year, the hit show Supacell premiered on Netflix. The superhero drama, created and produced by Andrew Onwubolu (known as Rapman), follows a group of black Londoners who develop superpowers triggered by sickle cell. Rapman told The Guardian that he “wanted [the show] to raise awareness and make people who’ve got sickle cell feel seen and heard”. Since the show’s release there has been spikes in google searches for sickle cell particularly in the week commencing 1st July when the show first held the number one spot on Netflix’s Global Top 10 English language TV shows and gained more than 18 million views in the first few weeks. The show has been important in raising awareness of sickle cell and the UK Sickle Cell Society has welcomed the success of the show and received around a 20% increase in inquiries.

3. September = Sickle Cell Awareness Month

September is Sickle Cell Awareness Month and so there will be a range of events in September to raise awareness of sickle cell. We will share these events throughout the month on our social media pages.

4. ‘SICKLE’ The Docufilm Premiere

In August, Fred – alongside John James from the UK Sickle Cell Society and several patients – has been involved in the recording sections for a documentary firlm (or docufilm) on sickle cell, which will be premiered on Wednesday 11th September. The docufilm, created by The Red Cell Network in partnership with Black Thrive Haringey, focuses on the history and impact of sickle cell. The premiere will be at the Everyman Cinema in Muswell Hill. Free tickets to the event can be obtained here.

5. Patient stories

We want these monthly blog posts to be useful to our readers. Over the last few months, we have had many interactions with people living with sickle cell and their stories are always really powerful. If you would like us to include a short paragraph about your lived experience with sickle cell, please do get in touch. Thank you!

July – Data, blood and water!

A quick recap

Last month, we discussed our efforts in patient engagement and key events that we attended including during World Sickle Cell Day where we shared our research.

What have we been up to this month?

This month, we provide an update on our research, discuss a sickle cell awareness event Rutendo attended, and we highlight the national blood shortage.

1. Research Update

We have been working closely with statistician Professor Alex Bottle who has been providing his expertise in analysing NHS hospital data to explore inequalities in hospital outcomes (including hospitalisations and length of hospital stay) in sickle cell compared to cystic fibrosis and haemophilia. We continue to progress with our literature review summarising existing evidence on inequalities and our work exploring specific indicators of inequality (including research funding) in sickle cell compared to these other conditions. We have started writing these up for publications in scientific journals and will work with patient representatives to produce abstracts in lay terms. Ultimately, all our work will be summarised in a report for the NHS RHO, and in a set of recommendations.

2. Engagement with patients, healthcare professionals and the public

Rutendo attended an event at The Africa Centre hosted by the Sickle Cell Society which focused on raising awareness about sickle cell and the importance of blood donations. There were great discussions among the panellists (including a patient representative and healthcare professionals) and the audience on tackling myths about sickle cell. The conversation covered a wide range of topics ranging from the use of language to blood donations.

3. National blood shortage

Although this is not directly part of our work, blood transfusions are an important intervention in people with sickle cell. Fred is a regular blood donor. It is a small gift that can save lives.

Blood stocks are currently unprecedentedly low. Due to a recent cyber-attack on London hospitals and a high number of unfilled appointments, blood supplies have dropped significantly. The NHS Blood and Transplant has issued an ‘amber alert’ and is urgently asking O negative and O positive donors to give blood.

You can book an appointment online, on the GiveBloodNHS app or call 0300 123 23 23.

4. Stay hydrated in the Heatwave

Finally, staying well hydrated is essential to prevent pain crisis and other complications in sickle cell. As we are experiencing some hot days, please remember to drink plenty of water throughout the day!!!

Rutendo and Fred wish you a great summer! See you next month.

 

June – A month of involvement

A quick recap

Last month, we focused on collaboration, networking and the sharing of our preliminary findings. We previously mentioned our abstract submission to the Annual Sickle Cell and Thalassaemia (ASCAT) conference. We are pleased to announce that our abstract on ‘Research disparities in sickle cell disease, cystic fibrosis and haemophilia in the UK’ has been accepted for an oral presentation at the ASCAT conference in October 2024.

What have we been up to this month?

This month, we are excited to showcase our efforts in patient engagement and sharing of our work during key events including World Sickle Cell Day and the Imperial Great Exhibition Road Festival.

UK Public & Patient Involvement (PPI)

Rutendo volunteered the Imperial College Great Exhibition Road Festival on Saturday 15th June with the Invisible Warrior project to raise awareness of sickle cell disease. She used this opportunity to discuss her current work on the NHS RHO-funded project.

She had a great time speaking to the public and learning about the great work other sickle cell researchers are working on at the College.

On Saturday 29th June, Fred used a local event of the Congenital Anaemia Network (CAN) to meet with people with sickle cell disease and to discuss about their live experiences and their awareness of the National Haemoglobinopathy Register. The poster on display, entitled “Your health, your data, your views”, was co-created with a couple of people with sickle cell disease whose input was incredibly valuable! Fred had engaged conversations with teenagers, parents, haematologists, … which were all very informative.

Global World Sickle Cell Day

Wednesday 19th June was World Sickle Cell Day.

To commemorate this event, Rutendo attended an Open Day event at Hammersmith Hospital hosted by the Imperial Sickle Cell Group to raise awareness on activities in health, research and advocacy in sickle cell disease within the Imperial College, Imperial healthcare NHS trust and beyond. Rutendo presented her sickle cell comparative research and listened to talks on exciting work and developments in sickle cell including from Dr Steven Okoli, consultant haematologist and co-founder of the Imperial Sickle Cell Group, Natasha Gordon-Douglas, lead mentor at the Sickle Cell Society and Ganesh Sathyamoorthy, deputy director of the Ethnicity and Health Unit.

Meanwhile, Fred participated in the first International Conference Sickle Cell Disease in Lusophone Countries in Lisbon, Portugal. His presentation focused on the global burden of sickle cell disease and the recommendations of the Lancet Haematology Commission on Sickle Cell Disease. The Conference had representatives from the World Health Organization, the European Hematology Association (EHA), ERN-EuroBloodNet, patient advocates, governmental authorities, health ministries, and healthcare professionals from Angola, Brazil, Cape Verde, Guinea-Bissau, Mozambique, Portugal, and Sao Tome & Principe. The need for reliable epidemiological data was one of the key take-home messages from this meeting.

 

Workshops & Online Survey

The James Lind Alliance and Genomics England are conducting a project in collaboration with the UK Sickle Cell Society on research priorities in genomics for sickle cell disease. Fred is involved in this project as an Information Scientist, alongside patient representatives and healthcare professionals. The team is organizing a series of workshops in person and online for young adults, adults, families and healthcare professionals. The first workshop will be held in London for adults (over 30s) on Tuesday 9th July. Participants can register using the following link.

Finally, EuroBloodNet, in partnership with the Lancet Haematology Commission on Sickle Cell Disease and ASCAT, is conducting a global survey of people with sickle cell disease to find out about their priorities in relation to research, education and policy. The survey was launched on the 19th of June and is available through the QR code or via this link.

May – Sharing science

A quick recap

Last month, we shared our findings on research grants allocated to sickle cell disease in comparison with cystic fibrosis and haemophilia from 3 main UK funders. We also described challenges, in terms of patient numbers, in the quality of the hospital data that we are using.

What have we been up to this month?

We have began to draft written outputs of our literature review and continue to progress with our analyses on specific indicators of inequality for sickle cell disease, cystic fibrosis and haemophilia, and our hospital data analysis work. In this month’s blog, we focus on collaboration, networking and the dissemination of our findings, which are important in developing and strengthening our research and enhancing the visibility and impact of our findings.

1. Collaboration: National Haemoglobinopathy Register (NHR)

For various and complex reasons, there is a lack of good data on sickle cell disease in the UK (as in most countries).

Fred met with the Deputy Chair of the NHR to discuss the quality and completeness of the Register and how the data held in the NHR could potentially be used in the future to study and document inequalities in sickle cell disease.

We are currently planning an event to find out what patients with sickle cell disease know about the NHR and what kind of scientific questions they would like it to be used for.

2. Networking: Ethnicity and Health Unit

On May 16th, Fred & Rutendo attended the celebration of the work of the Ethnicity and Health Unit (EHU) at Imperial College London and of Professor Mala Rao‘s (director of the EHU) CBE.

We have been collaborating with the EHU during this project who are offering their expertise on ethnicity and health research and are supporting us in developing our patient engagement work.

This event was a great opportunity to network with the EHU team and other experts in public health and ethnicity research.

3. Dissemination: Annual Sickle Cell and Thalassaemia conference (ASCAT) 2024 abstract

Rutendo submitted an abstract to the ASCAT conference which will be held in London from 2nd October to 5th October 2024. ASCAT is Fred‘s favourite scientific conference.

The event will showcase breakthroughs, advancement and other important research in sickle cell disease and thalassaemia. Health care professionals, researchers and people affected by sickle cell disease and thalassaemia will be attending the conference.

The abstract that we submitted covered our work on research disparities in sickle cell disease, cystic fibrosis and haemophilia in the UK in which we analysed publicly available data on research funding (described last month) and funding related outputs such as registered clinical trials, scientific publications and resources available to dedicated UK charities.

See you next month!

April – Diving into the data

A quick recap

Last month, we discussed our attendance at the Sickle Cell and Thalassemia All-Party Parliamentary Group and described how we performed our literature search which involved screening over 800 articles. We also described the data preparation/cleaning steps that we performed for our hospital data analysis study.

What have we been up to this month?

We have been extracting data from the literature search and exploring specific indicators of inequalities (e.g. number of clinical trials, publications or research funding). For the hospital data analysis study, we have began to explore trends in our data. We are keen to share the following early findings with you, highlighting that these are preliminary as we are conducting more in depth analyses.

1. Literature review

From the studies we included in our literature review, we identified key themes of inequalities  including access to care (e.g. delay in receiving timely pain relief), lack of knowledge of sickle cell disease from health care professionals, poor health outcomes (e.g. hospitalisations) and stigma and racism.

2: Specific indicators of inequalities

One of these is research funding where we investigated the money awarded by top UK funders to sickle cell disease research and compared this with funding allocated to cystic fibrosis and haemophilia. The UK funders that we included were: the National Institute for Health and Care Research (NIHR), UK Research and Innovation (UKRI), which includes the Medical Research Council (MRC), and the Wellcome Trust (Wellcome). We used publicly available data to obtain the information below.

Total amount of money awarded by funder (GBP) between 2010 and 2024

  • Cystic fibrosis was awarded the most amount of money by all 3 research funders between 2010 and 2024.
  • Cystic fibrosis was awarded around £67 and £74 million more than sickle cell disease and haemophilia, respectively.
  • Both cystic fibrosis and haemophilia were awarded more research funding by UKRI and Wellcome though haemophilia received the least amount of total funding due to NIHR funding allocated to haemophilia.

3: Hospital data analysis

We have extracted routine hospital admission data from the Hospital Episode Statistics (HES) for the three conditions considered during the period 2013-2022. Through this, 32,253, 15,351 and 18,910 individuals were identified with sickle cell disease, cystic fibrosis and haemophilia, respectively. These numbers are higher than we would expect for all three conditions, so we are trying to identify why. The Cystic Fibrosis Registry is considered to capture 99% of individuals with cystic fibrosis across the UK, but as previously demonstrated in this article, there is a lot more uncertainty around the number of patients with sickle cell disease.

The importance of high quality data on the number of patients and their condition is nicely described in this statement from the Chief Executive of the Haemophilia Society, included in this report:

4. Conference  

Last weekend, Fred participated to the Annual Scientific Meeting of the British Society of Haematology (BSH) and gave a talk on sickle cell disease as a global health issue to an audience of several hundred participants. It was also an amazing opportunity to hear the brilliant B-Positive choir live! They were incredible.

Picture credit: Vincenzo Giacco (@Vin_Giacco)

Want to contact us?

If you have any questions about this work, feel free to email r.muzambi@imperial.ac.uk, f.piel@imperial.ac.uk or to post a comment.

March – Playing with publications and numbers

A quick recap

Last month, we outlined the plans for the literature review, data analysis and engagement with patients and healthcare professionals components of our Sickle Cell Comparative Research project. This month, we report our progress (preliminary results) with the literature review and data analysis work.

Reflecting on our progress over the last four weeks

We kicked off this month by attending the Sickle Cell and Thalassemia All-Party Parliamentary Group (SCT APPG) meeting at the houses of parliament. John James OBE, CEO of the Sickle Cell Society and MP Janet Daby explored key advancements in sickle cell disease treatment. Community members had the opportunity to voice their questions and concerns.

OBJECTIVE 1: PERFORMING LITERATURE REVIEW SEARCH 

  • After finalising the protocol of our literature review, we searched 3 electronic databases (MEDLINE and PsychInfo which include published scientific journal articles on a range of topics (e.g. medicine, health and behavioural and social sciences) and the Health Management Information Consortium which includes reports from the Department of Health and The King’s fund). 
  • Besides the electronic databases, we have also identified relevant literature from organisations such as the Sickle Cell Society and the Cystic Fibrosis Trust, targeted webpages, disease registries and google searches.
  • We used search terms relating to our conditions of interest (e.g. “sickle cell disease”), inequalities (e.g. “barrier”, “survival”, “access”) and the United Kingdom (e.g. “Britain”, “UK”) 
  • We included studies of children and adults of any age and in any setting (e.g. GP, hospital and community) and excluded studies published before 2010.
  • In total, our search yielded 905 articles across all 3 databases, after excluding 74 duplicate studies
  • The title and abstract of 831 papers have been screened and so far 25 papers have been included in the final literature review.
  • More information on our findings from these studies will be shared next month!

OBJECTIVE 2: CONDUCTING DATA ANALYSIS

  • Using NHS hospital episodes statistics admitted patient care data, we included all individuals with clinical codes, International Classification of Diseases 10th Revision, for sickle cell disease, cystic fibrosis and haemophilia between 2013 and 2022.
  • We captured information on age at first hospital admission, gender, ethnicity and geographical region
  • We used the 2019 English Indices of Multiple Deprivation to capture information on deprivation (from least deprived to most deprived areas)
  • In total, after cleaning the dataset and performing exclusions (e.g. excluding those with missing age at hospital admission), we began the data analysis for this study.
  • While we are keen to share regular updates on our progress, we want to provide accurate comparisons with several indicators of inequalities. This requires careful analyses of the health data outlined above, which usually take weeks rather than days.

February post – Getting started

A quick recap

We are working on the Sickle Cell Comparative Research to Inform Policy project exploring inequalities in the care of people with sickle cell disease funded by the NHS Race & Health Observatory, and conducted at the School of Public Health, Imperial College London.

What have we been up to this month?

1. Objective 1: Conducting a literature review

a heap/pile of papers

    • Building on the No One’s Listening Report of the UK Sickle Cell Society, our aim is to gather evidence from government reports, academic literature and relevant organisations on inequalities in sickle cell disease and compare them with other inherited diseases such as cystic fibrosis and haemophilia.
    • We have developed a protocol for this review which includes a detailed approach on how we will obtain this information; which exact sources we will search; and what information we will extract from these sources.
    • We have began to search and gather evidence from a wide range of sources
    • This piece of work is important for two main reasons: i) it will summarise existing evidence and help identify particular gaps; and ii) by assessing the existing evidence, it helps avoiding duplicates efforts.

2. Objective 2: Planning our data analysis study

    • Our aim here is to use UK NHS hospital data (click on image below to find out more) to investigate hospitalisations in sickle cell disease, cystic fibrosis and haemophilia.
    • We have developed a protocol detailing how we will conduct this study and what analyses we will perform.
    • We have securely extracted anonymous hospital data of people with sickle cell disease, cystic fibrosis and haemophilia. We will use this data to answer a range of questions including on number of hospitalisations and length of hospital stay.

3. Objective 3: Engaging with patients and healthcare professionals

    • We are in the process of securing ethics approval to run workshops and focus groups with patients and healthcare professionals. This is a necessary but quite tedious piece of work required before we can engage with these stakeholders. More on this next month.

BLACK HEALTH MATTERSSource: BLACK HEALTH MATTERS (emory.edu)

What inequalities will we be exploring in our research?

We will explore a wide range of inequalities experienced in sickle cell disease and compare with other conditions. These inequalities will include but are not limited to the following:

    • Access to care for example hospital waiting times and length of stay
    • Poor health outcomes
    • Quality of treatment
    • Stigma and racism
    • Allocated research funding

When will we complete this work?

This work is set to be completed in autumn 2024.

Want to contact us?

If you have any questions about this project, feel free to email r.muzambi@imperial.ac.uk, f.piel@imperial.ac.uk or to post a comment.

January post – Welcome & introductions

Welcome on this new blog which aims to share updates on the Sickle Cell Comparative Research to Inform Policy project, funded by the NHS Race & Health Observatory, at Imperial College London.

We started our new project exploring inequalities in the care of people with sickle cell disease this month. Inequalities in sickle cell disease have been recently highlighted in the Sickle Cell and Thalassaemia All-Party Parliamentary Group inquiry into avoidable sickle cell deaths, titled ‘No-one’s listening’.

The NHS Race and Health Observatory recently published the  ‘Sickle cell digital discovery report: designing better acute painful sickle cell care’ report which outlined the poor experience that emergency hospital care that sickle cell disease patients experience from first-hand accounts and described key recommendations to improve care of sickle cell disease patients. 

The aim of our study is to better document and understand the inequalities in the care of sickle cell disease patients across England by comparing their care with other conditions considered similar such as cystic fibrosis and haemophilia. 

Meet the team 

(from left to right)

  • Dr Fred Piel – Senior Lecturer in Spatial Epidemiology and global expert of sickle cell disease, lead of the project | X/Twitter: @FredPiel
  • Dr Rutendo Muzambi – Research associated in Health Inequalities and epidemiologist – researcher on this project| X/Twitter: @Rutendo_rm
  • Dr Dan Dexter – Specialist Haematology Registrar – haematologist providing clinical input on this project.
  • Ganesh Sathyamoorthy – Deputy Director of the Ethnicity & Health Unit and trustee of the UK Sickle Cell Society.
  • Professor Alex Bottle – Professor of Medical Statistics – collaborator from the Dr Foster Unit

What work will we be doing for the coming months? 

  • Reviewing current evidence on inequalities in sickle cell care comparing with cystic fibrosis 
  • Perform data analyses assessing in inequalities in accident and emergency care such as hospital waiting times using data from hospitals across England 
  • Conduct workshops and surveys to understand sickle cell care patient’s experience and healthcare professionals working with people with sickle cell disease

So, watch this space for future monthly updates!

See you next month.