It’s time for equal care for sickle cell patients

Sickle cell disease is classified as a rare condition. Yet, for a long time, that was hard for me to believe, especially during my teenage years.

Growing up in South London, a city with a large Black African population, I never felt that sickle cell disease was rare; it just wasn’t spoken about. As I met other people living with it, I realized that we all had similar experiences despite the different ways that sickle cell affected us.

Because of this, it was surprising to learn that by medical standards, sickle cell is considered rare. What’s even more striking is how differently it’s often treated compared with some other rare conditions.

When I spoke with someone from another rare disease community, I was shocked by how positively they described their care. Doctors took the time to understand their condition, treating it as a unique opportunity to learn. They ensured that this patient received consistent follow-up and support. The patient felt respected, listened to, and cared for. It really moved me, because this is how healthcare should be.

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For many of us with sickle cell disease, though, the experience couldn’t be more different. Despite being one of the most common genetic conditions here in the U.K., especially among people of African and Caribbean heritage, patients often face neglect, misdiagnosis, and inadequate treatment. Reports like “No One’s Listening” — an All-Party Parliamentary Group inquiry that found “‘serious care failings’ in acute services and evidence of attitudes underpinned by racism” — as well as several personal testimonies reveal the same pattern: People with sickle cell disease are too often brushed aside, their pain isn’t taken seriously, and emergencies are mishandled.

This isn’t just about the condition itself; it’s about who it affects. Sickle cell disease primarily impacts people of Black descent, and this racial intersection profoundly shapes our healthcare experiences. Time and time again, Black patients are met with disbelief when describing pain, dismissed during crises, or subjected to delays that can lead to fatal outcomes.

In stark contrast, when I speak to patients from predominantly white rare disease communities, their experiences are often vastly different. They describe responsive healthcare systems, supportive doctors, and easy access to treatment and appointments.

The research, resources, and treatment options available for other rare conditions far outpace those for sickle cell. This disparity raises difficult questions: Why does a condition affecting more people, predominantly from one racial background, receive far less attention, funding, and care?

It becomes clear that racism and systemic bias play a significant role in shaping how sickle cell disease is treated, researched, and discussed. This isn’t merely a matter of medical ignorance; it’s about which patients’ suffering is prioritized.

I hope to see a future where the misconceptions and discrimination surrounding sickle cell are erased, and where patients receive the same level of compassion, research investment, and medical excellence as those with other rare conditions. Research must intentionally include and uplift underserved communities living with sickle cell, ensuring equitable access to care and innovation.

For many of us, managing sickle cell disease currently feels like a burden, something to endure rather than a reason to be supported. I’ve met countless people who disengage from healthcare entirely because of the poor treatment and lack of trust. And yet, when I hear how others with even rarer diseases are treated — with care, curiosity, and dignity — it becomes painfully clear what is missing for our community.

Sickle cell may be a rare condition, but the neglect surrounding it is far too common. Addressing that truth is the first step toward meaningful change.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.