Sickle cell disorder is a blood disorder that affects the haemoglobin, causing distortion in red blood cells into rigid sickle or crescent shapes as opposed to the usual flexible round shape that allows red blood cells to move freely through blood vessels. The sickle or crescent shape of the red blood cells causes slow movement or blockages in the blood vessels. Sickle cell disorder (SCD) is an inherited blood condition and predominantly affects those of African or Caribbean descent. According to the CDC, approximately 100,000 Americans have SCD, and SCD occurs in approximately 1 out of 365 African-American births. Meanwhile, in the UK, nearly 300 babies are born with SCD every year.
Currently, most SCD patients need to receive life-long treatment for the disease, with the only cure being stem cell or bone marrow transplants, which are not usually done due to the high risk associated with them. While emerging gene therapies might provide a cure for SCD, these gene therapies are likely to be very expensive and not an option for many sufferers of the disease. This is a big issue as SCD is one of the most prevalent genetic diseases, and thus raises questions of health inequity. CREATION.co analysed the online conversations of healthcare professionals to draw insight on this issue, looking at 14,992 posts between March 2021 to March 2022 to gauge the perspective of healthcare professionals within the sickle cell therapy area conversation.
HCPs use World Sickle Cell Day to draw attention to the need for improvements in SCD treatment
On June 19, World Sickle Cell Day was recognised, which caused a significant drive in conversation as HCPs used that opportunity to post about the need for higher quality care and quicker progress in implementing treatments within SCD. One paediatric-haematologist highlighted that for many patients, higher quality compassionate care was an unattainable goal, and called for HCPs to fix the issue.
Today is #WorldSickleCellDay
Patients with sickle cell disease deserve high quality, compassionate care.
For many, this seems like an unattainable goal.
It is our job to fix that.Glad we have so many great docs fighting for our #SickleCellWarriors pic.twitter.com/hVF8Pkilxq
— Nicole Kucine, MD,MS (@PedsHemeDoc) June 19, 2021
Meanwhile, physician and professor Dr Isaac Odame called for change in the treatment of SCD, stating that while there are new emerging treatments, implementing early diagnosis and treatment has been too slow.
June 19 has been celebrated as World Sickle Cell Day since 2009. While new treatments for SCD are emerging, progress in implementing early diagnosis and hydroxyurea treatment in LICs has been too slow. Change is needed.
— Isaac Odame (@DrOdame) June 18, 2021
Some HCPs also used World Sickle Cell day to draw attention to harmful misconceptions surrounding the use of opioids by SCD patients. HCPs decried the misconception that opioids were a major cause of deaths in SCD patients, citing a PubMed article as evidence to the contrary, and advocated for the use of opioids for adequate pain management for SCD patients.
https://twitter.com/GhanaboyPharmd/status/1406292096810729474
Opioids are not a major cause of death of patients with sickle cell disease – PubMed
So can we just STOP with the #OpioidStigma in patients with #SCD, please!!
(Thanks for the heads up on the paper, @GhanaboyPharmd!) https://t.co/WvQ5JssVFA
— Chad D. Kollas, MD (he/him/his) (@ChadDKollas) June 19, 2021
Inequality and patient experience formed over a third of sickle cell conversation
When HCPs discussed sickle cell, the largest contributors to the conversation were inequality and patient experience, particularly concerning the experiences of those of African descent. HCPs advocated against racism and for the experiences of black people, highlighting issues of institutional racism in the treatment of SCD.
One HCP chronicled his experience of advocating for his African American patient in a thread, sharing the patient’s experiences of not being seen or heard, and sharing his own opinions that he had documented in her patient chart stating, “Acknowledging the hard work of the team, I encourage intentionality in ensuring the approach to this patient is culturally humble, trauma informed, trauma responsive, & bias-mitigating, in order to produce an equitable, safe, & high quality outcome given her multiple & intersecting marginalized & stigmatized identities – Black, woman, sickle cell (chronic pain and disabling complications) including history of healthcare induced trauma resulting in distrust.”
My whole evening has been taken up advocating for one of my patients with African American American, woman, & has sickle cell anemia. She’s behaving exactly how a person behaves who has always had to fight to to be seen, heard, & believed. Security is involved. Admin. Nursing. 1/
— Dr. Ijeoma Nnodim Opara, MD, FAAP, FAIM (@innodim) February 26, 2022
Another HCP shared a news article about the death of a black sickle cell patient while highlighting the institutional racism at play.
This is so sad & shocking. The patient knew he needed oxygen but was not listened to. Sickle cell anaemia is common in black people; the lack of protocols, the holes in nurses knowledge – this is what institutional racism looks like. https://t.co/qx60QjojSN
— Dr Helen Salisbury (@HelenRSalisbury) April 3, 2021
HCPs celebrate new sickle cell treatment while continuing to highlight issues of access to existing treatment
One ray of hope in the area of SCD treatment came in the form of the new monoclonal antibody treatment crizanlizumab, which HCPs celebrated due to it being the first new treatment for SCD in 20 years. One HCP emphasised that this new treatment has the potential to reduce treatment inequalities for black people.
New drug Crizanlizumab is the first new treatment for sickle cell disease in 20 years @NICEComms has recommended this treatment- has the potential of reducing health inequalities for black people, who are disproportionately affectedhttps://t.co/XrHJ3X1bnQ
— Rajesh Mohan🌈 (@raj_psyc) October 5, 2021
However, while the release of this new treatment was widely celebrated, one HCP drew attention to the fact that generic treatment for SCD was still difficult to access for many across the globe.
Great news about Crizanlizumab. But sickle cell disease patients across much of the globe still have trouble accessing hydroxyurea, a generic medicine. https://t.co/rzQI60ls9T
— Ibraheem Abioye (@DrAbioye) October 6, 2021
Monitoring the conversation into health inequity in sickle cell disease
It is clear that HCPs within the sickle cell therapy area are widely concerned with the issue of health inequity being faced by those of African or Caribbean descent across the world, include concern about the low quality of existing care, issues surrounding the speed of diagnosis and the progress of new and existing treatments, and misconceptions that are causing black people not to receive adequate pain management and treatment. With emerging therapies and louder HCP voices speaking out against this inequity, there is hope that inequity within SCD will cease, and black minorities will receive the treatment deserved in this prevalent therapy area. CREATION.co has and will continue to monitor these conversations for the latest in what HCPs think about health equity.
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