We’re not doing enough to improve sickle cell patients’ quality of care

The lack of progress leaves me frustrated and heartbroken

Mary Shaniqua avatar

by Mary Shaniqua |

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Recently, for the first time I can remember, sickle cell disease has been in mainstream media quite a bit. Because much of the discourse has focused on treatments and curative therapies, I’ve been reflecting on what I can do to help drive progress in these areas.

In recent columns, I shared my stance on clinical trials and patient and public involvement. This led me to conclude that we as patients have some responsibility to contribute to treatment development.

Well, that was my initial thought. But, ever the overthinker, I’ve been interrogating my beliefs. Now, I’m not sure where I stand; perhaps writing this column will provide me with greater clarity.

If I can be audacious and frank, I don’t think healthcare professionals (including research clinicians) have done enough for sickle cell patients. I’d like to say this makes me angry, but it actually makes me sad. This heartbreaking realization begs the question: What more needs to be done for sickle cell patients to be seen as equal? What else do patients need to share of ourselves for healthcare professionals to treat us with dignity and respect across the board?

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‘No One’s Listening’ to Sickle Cell Patients, and That Must Change

A frustrating lack of progress

In 1981, the Sickle Cell Society produced a report titled “Sickle cell disease: the need for improved services.” The report describes poor care experiences among sickle cell patients, compounded by negative attitudes from healthcare professionals. Fast forward to 2021 — 40 year later — and the society’s “No One’s Listening” report spoke to the same issues. As a sickle cell patient, it’s emotionally crushing and draining to hear that nothing’s changed in four decades.

Sickle cell is not a new illness. The first official identification was in 1910, but the disease was around long before then. For example, researchers believe the Egyptian pharaoh Tutankhamun (who died around 1324 B.C.E. and is commonly known as King Tut) had sickle cell disease.

So to see how few advancements have been made in terms of treatment options and quality of care, I can’t help but feel like nobody cares about sickle cell patients. That’s a difficult and bitter pill to swallow.

Maybe some part of me has always known that; perhaps that’s why I’ve committed so much of my life to raising awareness of my disease, despite how countercultural it is for me to speak out.

I’d be remiss not to point to specific examples of the poor quality of care many patients receive. Apart from sickle cell crises, many of our healthcare dealings are with hematology specialists who know us and understand our condition. These interactions tend to be positive. However, when acute needs arise due to a crisis, this is where we may see a negative shift.

Now, don’t get me wrong, I’ve received good care during a crisis — but not often enough. Unfortunately, my negative experiences far outweigh the positive ones. Even among the positive interactions, there are caveats.

For example, I once arrived at an emergency department wearing a tracksuit and felt the treatment I received upon entry was subpar. After a few hours of discussion with the care team, I mentioned I was working on a particular merger at work, which led to a conversation about my profession. The quality of care I received seemed to improve significantly after that.

While I was grateful to receive good care, I don’t consider that experience a win. Treatment should be fair and compassionate for all patients irrespective of profession, housing status, race, etc. Respectability politics have no place in patient care. Feeling like I have to authenticate my patient status and medical needs in order to be taken seriously is a major problem.

At this point, I should think of some attention-demanding way to plead the humanity of sickle cell patients to healthcare professionals. But I, and others, have been doing that all our lives. Still, the dignity we request is often denied. Still, patients within our community pass away due to negligent care.

I have no idea where we go from here.

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.


Judy Gray Johnson avatar

Judy Gray Johnson

Please send me your email address . I have written a book that covers the 40's, 50's, and 60's. Since sickle cell was diagnosed in 1910, hopefu others will be inspired to add to the knowldge of the earlier years.


Whitney Smith avatar

Whitney Smith

I totally agree. I am a Sickle Cell Mermaid Warrior living with Sickle Cell Beta Thalassemia and your right not enough is being done to improve the quality of care with people who live with Sickle Cell. I consider sickle cell “the black sheep of diseases” because it doesn’t get the publicity attention it definitely needs and deserves like cancer, diabetes, autism, even mental health gets more attention but still sickle cell CONSTANTLY gets overlooked. We are definitely not listened to enough, more stereotyped. When I am in the hospital after so many days they are ready to kick me out even when I am repeatedly telling them I’m not ready and still in a LOT of pain. I do my best to advocate for Sickle Cell to try to bring more awareness. I would love for a Sickle Cell doll or stuffed animal to be made for children (and adults) and proceeds would go to the Sickle Cell Foundation to raise more awareness for research and such. I have how the doll would work and possibly look like but I can’t draw and I’ve pitched it to Mattel but of course they weren’t interested, but they have made a doll with vitiligo, a doll in a wheelchair, a doll with prosthetics and hearing aids, even made a doll with Down Syndrome. Also I would like to have a show or a reality show showing the life of person with sickle cell and camera would follow me around to like doctor’s appointments for treatments or when i am admitted to the hospital and what i have to go through when in a pain crisis but also follow me showing on trying to live a “normal life” but don’t know how and where i can pitch it. If they can make a show about sisters being overweight there can Be a show showing what’s it like for a person to live and have sickle cell and what we go through when in a crisis.


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