A Gene therapy breakthrough:
Jasmine Thomas-Alie asks whether a newly approved therapy could be a game changer for sickle cell and patient care.
When the news broke that a new gene therapy had been approved for sickle cell patients, musician, Daniel Aganga, 27, was elated.
Sickle cell patient, Daniel Aganga. Credit: Daniel Aganga.
Sickle cell patient, Daniel Aganga. Credit: Daniel Aganga.
He said: “I want a better quality of life and I want to live long for my daughter.
“If I do get the opportunity to take the therapy, I think I would take it.”
Daniel Aganga, and two-year-old daughter, Danai. Credit: Daniel Aganga.
Daniel Aganga, and two-year-old daughter, Danai. Credit: Daniel Aganga.
Exa-cel (Casgevy or Exagamglogene autotemcel) will be used to help treat and prevent sickle cell patients from having a painful crisis.
According to NHS England, it will be used to edit a gene in a patient’s bone marrow stem cells to help the body produce the correct levels of Haemoglobin. Blood stem cells will be removed from a patient's body to be edited in a lab using Nobel-prize winning CRISPR technology.
Accepted by NICE (National Institute for Health and Care Excellence) on 31 January, the therapy will be distributed to several specialist hospitals around the UK such as London, Birmingham. With around 50 patients, aged 12 and older, receiving the new treatment each year.
He continued: “For anybody with sickle cell, this is what we’ve been waiting for.”
A conclusion by scientific researchers highlighted that the new therapy would be a functional cure in 96.6 per cent of patients who may receive it.
Sickle Cell at birth
At birth, Daniel was diagnosed with sickle cell anaemia and has struggled with stabilising his health ever since. After experiencing two related comas by the age of 10 and frequent hospitalisations since 18, the new therapy is an opportunity to reduce these occurrences.
His hospital stays have not always been as relieving as he would have hoped. As he suffers from acute sickle cell pain, the 27-year-old has been prescribed opioids such as Fentanyl to act as pain relief but has said that he has been accused of its misuse by hospital staff.
In the past he said he also had to wait numerous hours for the medication due to low stock.
“I’ve been neglected medication because I’ve been seen as a druggie.
“Do you think that I want to come to hospital and take Fentanyl? I don’t like taking Fentanyl but it is what works for my pain. “
Daniel Aganga's TikTok video on delayed patient care. Video credit: Daniel Aganga.
His inpatient encounters with consultants and doctors have left him feeling negative and fearful about being medically treated. This has resulted in him not wanting to turn to A&E centres or hospitals in general.
“It’s sad to say but I would rather die at home, than die in a hospital."
He continued: “The number of times that I've been left and neglected, I can't take it anymore.
"I always say to my family and friends, unless I’m dying do not take me to hospital.”
In 2023 after being hospitalised for eight weeks, Daniel began posting online videos about sickle cell after being persuaded by his partner. He began making music and educational videos on Tik Tok expressing his personal experiences of living with the condition.
Daniel Aganga's music video on living with Sickle Cell, titled 'Invisible Pain'. Video Credit: Daniel Aganga.
After posting his first video, he gained over 150,000 views.
The dad of one, now regularly uploads updates about his health, and makes an effort to spread awareness about the condition.
In a TikTok video posted on February 18 2025, three weeks after the gene therapy approval, the then 26-year-old took to explain what this new therapy could mean for him if selected.
“This could change my life… this would change my life.”
Daniel Aganga's TikTok video discussing the new gene therapy 'Exa-cel'. Video Credit: Daniel Aganga.
What is Sickle Cell?
Sickle cell is a disorder in the human body that affects the shape of red blood cells.
People with this condition are unable to make an appropriate level of haemoglobin, a substance that transports oxygen around the body. This can cause red blood cells to take the shape of a crescent moon, instead of a disc shape, according to the NHS.
John James, Chief Executive of the Sickle Cell Society, explains: “The general misconception of sickle cell is that people think that it is a communicable condition when it is not because it comes from both parents."
Chief Executive, John James OBE. Photo credit: with kind permission of The Sickle Cell Society
Chief Executive, John James OBE. Photo credit: with kind permission of The Sickle Cell Society
A person develops sickle cell, when they have inherited the sickle gene from both parents, where both are ‘carriers’ of the gene. It can also be developed by one parent having the disorder completely and their partner only being half of a “carrier”.
“Another misconception that people ask is if one person has sickle can their children also get sickle, yes they can because one person might have sickle cell anaemia and the other parent might be a carrier.”
The Sickle Cell Society is a UK-registered charity established in 1979 that supports individuals affected by sickle cell disorder, working closely with patients, parents, and healthcare professionals.
A recent study conducted in May 2024 by the charity, showed that approximately 17,500 people in the UK have sickle cell disorder. This makes it the fastest-growing genetic disorder.
The charity understands that with an estimated 300 babies born with the disorder each year in the UK, one in 79 babies carry the sickle cell trait.
According to The Sickle Cell Society, one in 79 babies are born with Sickle Cell Trait in the UK.
According to The Sickle Cell Society, one in 79 babies are born with Sickle Cell Trait in the UK.
“This is a condition that can affect all races, including white individuals.
“There are people who have carrier status or trait, which is another way of saying carrier status, sometimes do not know that they are carriers. This happens particularly with people who immigrated and appear to be healthy.”
An extreme symptom of the disorder is having a painful episode, also known as a crisis. A crisis can often be triggered by changes in the weather, such as cold temperatures or excessive stress.
This painful occurrence, forms when someone with the disorder’s blood vessels become blocked in certain areas of the body. This can occur throughout any part of the body such as the chest, or back.
Strong medications such as Co-Codamol, Morphine, and Fentanyl are predominantly used as pain relief in the event of a crisis. However, these medications must be prescribed by medical professionals but as described in Daniel’s case, sickle cell patients can experience delays in receiving medication and in some cases are flatly denied.
The Sickle Cell Society has a network of volunteers. The organisation has advocated for patient care standards by collaborating with the All-Party Parliamentary Groups to publish the ‘No One’s Listening Report’ in 2021 about healthcare failings and also helped to overturn NICE’s previous rejections of sickle cell treatments in 2023.
The chief executive continued: “There is clear evidence that race or negative attitudes towards people with sickle cell is evident.
“The evidence collected from the ‘No One’s Listening’ report was that if you have a crisis and you’re going into hospital regularly, some healthcare professionals deem you to be a drug seeker.
“That is something that many patients and families have experienced.”
The ‘No One’s Listening’ report was an inquiry conducted by All-Party Parliamentary Groups and the Sickle Cell Society, into the ‘avoidable deaths and failures of care for sickle cell patients in secondary care’.
Front cover of the 'No One's Listening' report. Photo credit: with kind permission of The Sickle Cell Society
Front cover of the 'No One's Listening' report. Photo credit: with kind permission of The Sickle Cell Society
Following the death of 21-year-old, Evan Nathan Smith in North Middlesex University Hospital in April 2019, an inquest found that his death could have been preventable had he received the appropriate care. The report was triggered after Evan’s death and began looking into the sickle cell care that he received and that others have been enduring.
It found that Evan faced repeated delays in receiving appropriate treatment and was declined lead care by the haematology team of the hospital after his admission.
Statement photograph by the Sickle Cell Society following Evan Smith's death. Photo Credit: with kind permission of The Sickle Cell Society
Statement photograph by the Sickle Cell Society following Evan Smith's death. Photo Credit: with kind permission of The Sickle Cell Society
The report also covered in-depth studies into ‘sub-standard care’ in general wards and A&E, low awareness of sickle cell among health care professionals with inadequate training and negative attitudes towards sickle cell patients.
“Low awareness and education were a contributing factor in Evan’s case and that was because he was on a ward, he knew he was ill, he knew he was sickling but no one listened to him.
“In the No One’s Listening report, there was a lack of joined-up care. When Evan was admitted, it could have saved his life had the doctors sought advice from the specialist haematology team.”
Negative attitudes towards sickle cell patients have shown to be a key factor in the refusal of doctor-patient interactions, particularly when a crisis occurs. Evidence from the 2021 study, suggests that behaviour towards sickle cell patients is often ‘underpinned by racism.’
Several patient experiences were shared in the report, with numerous patients detailing verbal racist abuse by hospital staff.
“Young black men and women can be perceived as being more aggressive or more noisy in those situations where they are trying to deal with their pain and making a lot of noise.
“There are people who don’t believe or understand or who are not empathetic and there are cases where hospital security has been called.
"So, the response isn’t I’m going to treat your pain, instead, it’s you’re disruptive and challenging.”
Exa-cel, as a new gene therapy, is one of the first instances where medical treatment for people with sickle cell could prevent these occurrences and incidents by preventing crises and the need for sickle cell patients to be hospitalised.
The approval of the gene therapy is the conclusion of a long journey for campaigners. There have been two previous rejections of treatments for the disorder Voxelotor and Exa-cel, Casgevy by NICE. This approval is undoubtedly a step in a positive direction for people with sickle cell.
CEO John James OBE, celebrates new gene therapy approval. Video credit: with kind permission of The Sickle Cell Society
Previously, in March 2024, NICE announced their decision to reject the now newly approved therapy Exa-cel. The public body did not believe that the treatment would be a cost-effective use of NHS resources.
In response to this, the Sickle Cell Society partnered with stem cell charity, Anthony Nolan in the same month to combine resources and to challenge the decision. Both organisations released an action plan, urging members and donors to respond to a consultation by NICE that was open until 11 April 2024.
The Sickle Cell Society and The Anthony Nolan charity public partnership over NICE appraisal. Photo credit: with kind permission of The Sickle Cell Society
The Sickle Cell Society and The Anthony Nolan charity public partnership over NICE appraisal. Photo credit: with kind permission of The Sickle Cell Society
Although the therapy has been accepted for use in the NHS as of January 2025, the Sickle Cell Society’s chief executive says it has been long overdue despite its relevance for the UK population. He believes there has been a lack of understanding, a lack of investment and information in the treatment.
He continued: “We with the Anthony Nolan charity, worked hard to get it over the line because they’ve rejected it before.
“We’ve got the gene therapy now and it’s great because it’s an option, apart from the standardised treatments and transfusions; what else is there?”
Despite the positive news about the gene therapy, a key finding from the 'No One’s Listening' report is that there is a lack of knowledge and appropriate training among healthcare professionals on how to treat sickle cell patients effectively.
Patients in the 2021 study reported that, due to ‘the low levels of awareness’ among healthcare workers they had encountered, they felt that they had to ‘educate staff themselves’. John James also believes that A&E and increased pressures on the NHS are other contributing factors to inappropriate patient care.
“There is still an enormous amount of low-level awareness about sickle cell from health care professionals, particularly those who do not specialise in the red cell area.
“Guidance has suggested that those suffering from a sickle cell crisis should receive pain relief within 30 minutes and the fact that the system is unable to respond to that consistently does demonstrate a barrier.”
A patient from the study and Senior Community Engagement Officer for NHS Blood and Transplant, Calvin Campbell, 60, says that he has encountered negative experiences due to low-level awareness from healthcare professionals despite working in the sector.
Senior Community Engagement Officer, Calvin Campbell. Photo credit: Calvin Campbell
Senior Community Engagement Officer, Calvin Campbell. Photo credit: Calvin Campbell
“I’ve been called every name under the sun by doctors and nurses.
“I’ve been called every racial slur you can think of.”
Calvin says these experiences have impacted his views of being treated at a hospital and refuses to go unless he is in extreme pain. He is one of numerous patients who took part in the Sickle Cell Society’s ‘No One’s Listening' report to explain their experiences.
Calvin Campbell statement in the 'No One's Listening' report. Photo credit: The Sickle Cell Society
Calvin Campbell statement in the 'No One's Listening' report. Photo credit: The Sickle Cell Society
“It takes a lot for me to go to the hospital, for me to go it means I have no other choice.
“If I have a choice, I’m not going there.”
Working with the NHS as an engagement officer for over six years, he has the role of raising awareness of blood donations, particularly in the black and brown communities.
As a patient himself, he also regularly receives red cell exchange every four weeks and has done so for the last 10 years. A red cell exchange (a form of blood transfusion) is used to treat blood levels in the body, by inserting healthy blood cells in and removing sickled blood at the same time.
Calvin Campbell receiving red cell exchanges. Photo credit: Calvin Campbell
Calvin Campbell receiving red cell exchanges. Photo credit: Calvin Campbell
“People don’t realise just how important blood donation is for people like me.”
Before receiving red cell exchanges, Calvin used to have blood transfusions every week. He would be transferred up to three to five pints every session.
“Prior to having these transfusions, my life was terrible.
“I couldn’t plan more than a day or two ahead.”
The 60-year-old explained that the red cell exchanges that he receives have been life-changing for him, and he has no plans to take the gene therapy due to the lack of information about it.
“My issue is the fact that they put the information out, but they don’t tell people enough about it.
“It’s good that they’re trying, for someone like me it wouldn’t be possible, but if it can help someone else, I’m all for it.”
What is the reality of the hospital experience?
Shanta Mitchell, 43, from Streatham, South London was diagnosed with Sickle Cell at two years old and says that a crisis is the worst pain imaginable.
Sickle Cell patient, Shanta Mitchell. Photo credit: Shanta Mitchell
Sickle Cell patient, Shanta Mitchell. Photo credit: Shanta Mitchell
“You can’t eat, you can’t sleep, you can’t think.
“It’s like everything shuts down, you’re just in so much pain.”
Listen to Shanta explain crisis symptoms and the impact of patient care on Sickle Cell Talks' latest episode
Having to attend hospitals for most of her life, Shanta has had to be assertive when it came to receiving treatment.
“I was labelled as a non-compliant patient.”
The 43-year-old described a ‘non-compliant patient’ to be someone who doesn’t follow the advice given by a doctor, such as being ‘combative’ in the hospital. She said she was labelled as such due to frustration over constant blood tests but no treatment.
“At eight o’clock in the morning, I don’t want to be bothered.
“The same nurses would have taken blood from me yesterday or a couple of days before.”
Shanta says she has faced unfriendly hospital staff throughout her childhood and as she has got older.
Whilst other children her age were in school, Shanta was in hospital being moved onto different wards.
At the age of 15 years old, Shanta was moved to an adult ward despite being only a child. The change in ward caused her to feel uncomfortable, especially when she was unwell.
The NHS now have adolescent wards which look after patients up to 18 years old.
“On an adult ward, you don’t get that love and care that you would on the children’s ward.”
Despite spending a lot of her time in the hospital, the 43-year-old had and still has a good support system around her. She would have friends and family visit and sit with her during her hospital stays.
“I’ve always had sickle cell; I grew with it.
“It’s all I’ve known.”
Shanta says hospital staff that are compassionate and caring, are important for sickle cell patients.
“My consultant at the moment is amazing, he’s very good at his job and very knowledgeable.
“If he says to me that I can’t go home, I have to accept it because I know that he is telling me that I’m not well enough.
“He’s telling me that because I could die.”
Sickle cell patient and Croydon Sickle Cell and Thalassaemia Centre volunteer, Annie McDonald, 70, has experienced multiple crises and fluctuations in medical care for several years. Due to age, she does not believe that the gene therapy will be an effective treatment for her.
Volunteer and Sickle Cell patient, Annie McDonald at the Croydon Sickle Cell and Thalassaemia Centre.
Volunteer and Sickle Cell patient, Annie McDonald at the Croydon Sickle Cell and Thalassaemia Centre.
Living in South London, she has been treated at different NHS hospitals and talks of encountering negative experiences with medical professionals whilst suffering from chronic crisis pain.
The 70-year-old and mother of two said: “No one should be alone suffering with sickle cell.
“They don’t care about us and it’s so sad.
“Most people who you speak to who have sickle cell will tell you, they’ve had to have rows trying to get their prescriptions.”
Living with the condition for all of her life, Annie says non-opioid medications are not strong enough to treat pain during a crisis. However, hospital staff have tried to monitor and regulate her doses.
“One staff member turned to me and said do you know how much that tablet costs? It was painkillers. She told me instead to have paracetamol.”
The pain killer was Co-Codamol, effective pain relief when treating her crises as it eases her symptoms quicker than others.
Over the years, Annie has had several health complications due to her sickle cell disorder such as kidney and liver problems. These health complications have impacted her career.
Annie McDonald underwent extensive treatment due to her Sickle Cell crises. Photo credit: Annie McDonald
Annie McDonald underwent extensive treatment due to her Sickle Cell crises. Photo credit: Annie McDonald
“The stress was killing me and I decided to take ill-health retirement.”
In 1994 following her resignation, the mother of two came across an article in a newspaper run by two nurses presenting the then newly Croydon Sickle Cell Thalassaemia Centre, in South London.
Once it opened, Annie joined and became secretary for the Centre. She has remained in the role for over 30 years.
Secretary Annie McDonald at the support group's 25th anniversary celebration. Photo credit: Annie McDonald
Secretary Annie McDonald at the support group's 25th anniversary celebration. Photo credit: Annie McDonald
The Centre aims to offer sickle cell patients advice on treatment, counselling and health screenings. Since 2003, it also works closely with a self-funded support group made up of nurses, volunteers, and families for people with sickle cell.
Volunteers at Croydon's Sickle Cell support group say it is like a 'family'
“I’ve found my purpose in life which is working here.
“The support group have also been a family to me.”
The support group provides sickle cell patients with hospital packs for those who have been admitted and newborn baby packs for babies with the condition.
Volunteer Annie McDonald with blanket provided in the Support group's hospital packs. Photo Credit: Annie McDonald
Volunteer Annie McDonald with blanket provided in the Support group's hospital packs. Photo Credit: Annie McDonald
The NHS and Sickle Cell
Doctor Mary Clarke is a former consultant haematologist at St Helier’s Hospital in Epsom, Surrey. She has over 35 years of experience and now works closely with the support group.
At the beginning of Doctor Clarke’s career in 1983, limited information and training was given about sickle cell.
Dr Mary Clarke has been supporting the support group for over 20 years. Photo credit: Croydon Sickle and Thalassaemia support group
Dr Mary Clarke has been supporting the support group for over 20 years. Photo credit: Croydon Sickle and Thalassaemia support group
“Training has gotten better but sickle cell needs to be on the curriculum.
“When I started in haematology which was a long time ago, it wasn’t very good.”
Dr Clarke said that through the help of well-known haematologist, Sally Davis and famous Sickle Cell nurse, Elizabeth Anionwu, she was able to learn about the condition.
“There was a lot of people with sickle and nobody knew anything about it but the two of them published a lot and educated us all.”
Dr Clarke was aware of the lack of information about the condition of healthcare providers so she began to create teaching sessions for medical students and young doctors.
She said she would regularly go down to A&E centres with someone who had sickle cell to explain to staff the signs and symptoms. But Dr Clarke says that the health service is under pressure.
“There aren’t enough doctors, there aren’t enough nurses and there are no beds.
“So, A&E piles up with people who should be on a ward.
“There was a survey done where nurses were asked if they were told about sickle cell and many said no.”
Dr Clarke also volunteers as an assistant secretary for the Croydon Sickle Cell and Thalassaemia support group on Whitehorse Road.
Secretary, Annie McDonald and Dr Clarke with support group event. Photo Credit: Croydon Sickle Cell and Thalassaemia support group
Secretary, Annie McDonald and Dr Clarke with support group event. Photo Credit: Croydon Sickle Cell and Thalassaemia support group
“Volunteering at the group has allowed me to see a different side of sickle and what it is like to live with it.
“There are two groups of people to educate with sickle, the doctors and the nurses.
‘I think if you don’t educate people with sickle, how do they know what to ask them?”
Although the training was limited, Dr Clarke says these teachings increased her desire to learn more about sickle cell and the various treatments for it.
“CRISPR is out there and biologists know about it.
“It is the thing for the future in medicine and biology.
“It is an amazing bit of discovery and for the sickle, it is relatively simple, as much as it is not putting anything in, it’s switching foetal haemoglobin on so it doesn’t sickle.”
Christine Williams, a general nurse and health mentor, has specialised in patient care for over 40 years. She played a key role in opening the Croydon Sickle and Thalassaemia Centre in 1990 and has since been mentoring students, medical staff, and individuals living with sickle cell disorder.
Sickle cell nurse, Christine Williams has been specialising with the condition for over 30 years. Photo Credit: Christine Williams
Sickle cell nurse, Christine Williams has been specialising with the condition for over 30 years. Photo Credit: Christine Williams
Nurse Williams began working with sickle cell after her son became ill with the condition over 30 years ago. Despite travelling around London as a health mentor and studying obstetrics, psychiatry and nursing, training on sickle cell was limited.
“There was no training and nobody told us that there is a crisis that you can have that is pain-free.
“It is called a Splenic Sequestration crisis.”
Christine wanted to learn more about the condition and its effects and began asking other medical professionals such as paediatricians at her workplace, for the information they knew about it.
“None of them knew anything and they looked at all the books that they had.
“There was one line about Thalassaemia, but nobody knew anything and they said that they weren’t even told about it at medical school.”
She says that people with sickle cell should have 24-hour dedicated service centres, run by consultants, doctors and nurses. The ideal centres would be located in a central location so that many patients could access them.
Christine says that this is an idea for the future that could allow patients to be treated within the appropriate time frame of 30 minutes and would be successful for people with the condition. However, the new gene therapy could offer this, even though it does not have a lot of information about it.
“It’s new and it will be a future trend.”
Clinical nurse, Paula Lindo has been working with people with sickle cell since 1999. Like Dr Clarke, she began working at St Helier’s Hospital in Haematology and later moved to become a clinician in 2017 with limited information about sickle cell.
Clinical nurse, Paula Lindo started her career in Haematology alongside Dr Clarke in 1999.
Clinical nurse, Paula Lindo started her career in Haematology alongside Dr Clarke in 1999.
Despite the 2021 report published by the Sickle Cell Society and All-Party Parliamentary Group, Paula says sickle cell patients are still not being treated promptly.
“Still no one’s listening.
“We try and get staff to use the ‘ACT NOW’ system.”
‘ACT NOW’ is an awareness phrase that calls for healthcare staff to promptly treat sickle cell patients who may be experiencing a crisis.
‘Analgesia’, ‘Compassion’, ‘Tests & Triggers’, ‘Notify’, ‘Oxygen’ and ‘Watch’ make up the abbreviated phrase. These instructions signal the steps that should be followed for appropriate treatment.
Paula says that she visits local A&E centres, publicising ‘ACT NOW’ to alert emergency staff to the correct treatment for sickle cell patients who may come in. She wants the service to be better prepared.
Clinical nurse, Paula Lindo with Sickle Cell awareness stand at Croydon centre.
Clinical nurse, Paula Lindo with Sickle Cell awareness stand at Croydon centre.
“I also make sure patients have their sickle cell cards on them when attending hospitals and A&E.
“They must show this to staff so that they (the staff) know they have sickle cell.”
Sickle Cell patient card that is given to people with condition that require medical attention
Sickle Cell patient card that is given to people with condition that require medical attention
Alongside Annie McDonald and Dr Mary Clarke, Paula also volunteers with the Croydon Sickle Cell and Thalassaemia support group as a clinical nurse specialist. She provides support to people with sickle and their families.
Sickle Cell Solutions
Stuart McGunnigle, the Network Manager for the Red Cell Network at University College London Hospitals NHS Trust, is also a documentary film producer. With funding from NHS England, he produced a short film in 2024 to raise awareness about the care of sickle cell patients.
Executive producer, Stuart McGunnigle says the docufilm will address the critical gaps in awareness of Sickle Cell disorder. Photo credit: The Red Cell Network
Executive producer, Stuart McGunnigle says the docufilm will address the critical gaps in awareness of Sickle Cell disorder. Photo credit: The Red Cell Network
“You don’t need to look far or listen to the news for more than a day to hear about a sickle cell crisis with emergency staff and people waiting on trolleys.
“That doesn’t just affect the care of the patients but it affects the time that staff have to go and do their training that will benefit the care that they can give.
“It is a vicious cycle.”
The Network Manager and producer explained that due to the current position of the NHS with its high patient demand and lack of resources, hospital staff are under a lot of pressure.
Stuart’s team in the network field consists of fewer than two staff members assigned to approximately 40 hospitals within his hospital trust. Each hospital has three different departments that may treat sickle cell patients, and each department operates on a varying staff schedule.
“Nursing turnover rates are high and part of what I’ve done with the docufilm is because we know that it is difficult to nail people down, so can we bring about interest and education through different means?
“That’s where the docufilm comes in, can we make learning sickle cell more interesting to people?”
His docufilm titled ‘Sickle’ has been premiered in cinema venues such as Tottenham Court Road’s Odeon cinema and the Ritzy in South London, for free of charge.
It has a running time of 25 minutes and also features CEO John James from The Sickle Cell Society to Senior Engagement Officer, Calvin Campbell.
Executive producer, Stuart McGunnigle at 'Sickle' docufilm premiere in Everyman Cinema, Muswell Hill. Photo Credit: The Red Cell Network
Executive producer, Stuart McGunnigle at 'Sickle' docufilm premiere in Everyman Cinema, Muswell Hill. Photo Credit: The Red Cell Network
“Addressing critical care gaps was an essential reason for creating the docufilm, it is about educating people that exist within the healthcare system to be able to provide better care.
“The point of the docufilm was to look and think outside of the box and think about how we can have the biggest impact.”
'Sickle' docufilm trailer featuring CEO John James from the Sickle Cell Society and Senior Community Engagement Officer, Calvin Campbell. Video Credit: The Red Cell Network
Stuart says that the project will be available online in the future so that people can stream it and hopes that it will be featured in staff training for the next generation of medical students.
Science, Health and Social care student, Gabrielle Frederick, 18, would like the younger generation to learn about sickle cell to increase patient care and overall awareness.
Science, Health and Social Care student, Gabrielle Frederick sold badges from The Sickle Cell Society at school. Photo Credit: Gabrielle Frederick
Science, Health and Social Care student, Gabrielle Frederick sold badges from The Sickle Cell Society at school. Photo Credit: Gabrielle Frederick
“It’s important to make it more normalised, it should be standard knowledge.
“People know about anaemia and other conditions but they don’t know about sickle cell.”
With Gabrielle’s mother having sickle cell and it running in her family, the student has made an effort to spread awareness to other pupils about the condition through a school bake sale and educational tutorials held in September 2024 as part of sickle cell awareness month.
“At break time, outside of our canteen, I was able to have a little table with sweet and savoury foods.”
She also sold Sickle Cell Society badges for 50p for sixth-form students to buy and wear throughout the month. Raising just over £50, she explained the importance of people learning about the condition.
“It’s about letting people know that just because someone is different to you not to discriminate against them or treat them differently but instead try to understand them instead of judging them.”
The harrowing stories shared by individuals with sickle cell disorder and their experiences with care are distressing.
While Exa-cel, the new gene therapy, represents a big step forward for those with the condition, there is a clear need for further action. The key areas for improvement include raising awareness among the public and providing better training on the disorder to medical staff.
This work is well underway thanks to the dedication of healthcare professionals working with sickle cell patients and their commitment to enhancing patient care, along with initiatives like the docufilm “Sickle” and community advocacy.
All of this is creating a greater understanding of sickle cell disorder, which over time many hope lead to more breakthroughs and better patient care.
All of this is creating a greater understanding of sickle cell disorder, which over time many hope will lead to more breakthroughs and better patient care.
