Sickle Cell Disease (SCD) is a genetic blood disorder that primarily affects Black American communities in the United States, though it can occur in any racial or ethnic group. Individuals with SCD often experience painful episodes, known as sickle cell crises, which can be debilitating and require emergency medical care. Unfortunately, many SCD patients face significant challenges when seeking treatment in emergency departments, including long wait times, stigma, and inadequate pain management.
In this article, we explore the experiences of sickle cell patients in emergency care, the challenges they face, and the ways they can advocate for themselves to receive appropriate treatment.
Many Sickle Cell patients try to manage their pain at home using hydration, over-the-counter medications like ibuprofen or Tylenol, and prescription opioids.
“Some also have long-acting medications like OxyContin or MS Contin and short-acting like oxycodone or morphine for their home regimen,” Dr. Brenda Merriweather tells BlackDoctor.org.
However, when their pain becomes unmanageable and they are breaking through their home regimen, they must decide whether to seek emergency care.
“Many of them have had negative experiences with providers in the ER, so they hesitate. They worry about being seen as drug seekers or having their pain dismissed,” Dr. Merriweather adds.
“Some patients, if they are fortunate, have access to infusion centers or day hospitals where they can get fluids, IV pain medication and lab work. But others have no choice but to go to the emergency room,” Dr. Merriweather notes.
When sickle cell patients arrive at the emergency department, they frequently encounter long wait times. Emergency departments prioritize cases based on severity, meaning patients with heart attacks, strokes, or severe respiratory conditions may be seen first. While sickle cell crises can be life-threatening, the” invisible” nature of their pain often results in delayed treatment. When patients are triaged, their vitals may be normal, so this also can lead to delayed treatment.
Moreover, many emergency department providers are unfamiliar with the established guidelines for treating sickle cell patients. The National Institutes of Health (NIH) released guidelines in 2014, and the American Society of Hematology (ASH) updated pain management guidelines in 2020. Despite these recommendations, some healthcare professionals still lack awareness of the best practices for treating SCD, leading to inconsistent and inadequate care.
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Sickle cell patients face several major barriers when seeking emergency treatment, including:
“Most sickle cell patients in the U.S. are African American, although anyone can have the disease. Patients face bias based on race and their condition. Some doctors assume they are drug-seeking and do not take their pain seriously,” Dr. Merriweather shares. “What these patients need is a compassionate approach. They should be seen within 30 minutes of arrival. But instead, they often wait for hours without receiving proper treatment.”
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While systemic change is needed to improve emergency care for sickle cell patients, individuals can take steps to advocate for themselves, including:
In addition to the above, Dr. Merriweather advises being specific about your symptoms.
“Instead of just saying ‘I’m in pain or I’m hurting,’ they should describe their treatment history: ‘I’ve taken two Norco today, but it didn’t work. I’ve tried resting and hydrating, but my pain is breaking through my usual regimen. My pain score is at a 10′ Providers respond better to concrete information and data,” Dr. Merriweather adds.
Another way patients can advocate for themselves is through transition education.
“Young sickle cell patients need to be taught how to manage their condition independently so that by the time they go to elementary school, middle school, college or move out on their own, they can confidently navigate their care,” The best approach is to start transition education when the patient is young. Dr. Merriweather says.
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While sickle cell crises cannot always be prevented, patients can take steps to reduce their frequency and severity. Dr. Merriweather advises the following:
“Family members can be educated about the disease and how to recognize signs of crisis. When I worked in clinics, I encouraged patients to bring a trusted family member with them to clinic—like a parent, grandparent, sibling or roommate—so they could learn how to help,” Dr. Merriweather adds. “Caregivers should pay attention to changes in the patient’s behavior, like staying in bed more or taking extra medication. If a crisis seems to be starting, they should encourage the patient to drink fluids and contact their doctor as soon as possible. Early intervention can sometimes prevent an ER visit. Always have a plan to get to an emergency department if needed and that includes transportation and a driver.”
Living with sickle cell disease presents significant mental and emotional challenges. Patients often face medical trauma, stress, and frustration when seeking care. According to Dr. Merriweather, strategies for improving mental well-being include:
To improve emergency care experiences for sickle cell patients, hospitals and healthcare providers must:
“There needs to be more education on cultural competency and sickle cell treatment guidelines. ER providers should be trained on how to properly triage and manage sickle cell pain,” Dr. Merriweather notes. “Ideally, hospitals should implement mandates requiring Sickle Cell patients to be seen within 30 minutes of arrival. Institutions like Johns Hopkins have already tracked and improved their response times. More hospitals need to follow suit.”
Several organizations provide valuable information and support for sickle cell patients and their families:
Sickle cell patients deserve compassionate and timely medical care when experiencing a crisis. While advocacy and education can help patients navigate the healthcare system, systemic changes are needed to ensure that all individuals with sickle cell disease receive the care they need without stigma or delay. By raising awareness, improving medical training, and implementing standardized treatment guidelines, we can work toward a healthcare system that truly supports sickle cell patients. “Remember, Sickle Cell patients are not drug seekers, they are seeking treatment”. Dr. Merriweather notes.
If you or a loved one has sickle cell disease, consider reaching out to local support groups, staying informed about your treatment options, and advocating for better care. Together, we can help create a more equitable and compassionate healthcare experience for all Sickle Cell patients.
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