Sickle Cell Patients Face Prolonged ER Waits, Discrimination, and Treatment Challenges

Heather Avant, a 42-year-old photographer from Mesquite, Texas, has developed a unique strategy when she needs to visit the emergency room – dressing up meticulously. This routine is not about fashion; it’s a response to a lifetime of battling sickle cell disease, a rare blood disorder that affects an estimated 100,000 Americans. While the condition can affect anyone, Black patients, like Avant, form the majority of those afflicted in the U.S. 

Sickle cell disease patients live with the constant threat of a sickle cell crisis, which can strike at any moment. During these crises, their rigid, sickle-shaped red blood cells become lodged in blood vessels, causing excruciating pain and severe breathing difficulties. Left untreated, these crises can escalate into life-threatening complications such as strokes, seizures, and sepsis. 

When a sickle cell crisis strikes, patients rush to the emergency room to receive high doses of opioids, intravenous fluids for dehydration, and sometimes even blood transfusions. However, ER staff, already overwhelmed and grappling with nursing shortages, often lack experience in treating this rare disease. Compounding the issue, doctors, wary of the ongoing opioid crisis, are sometimes reluctant to prescribe the necessary painkillers.

As a result, sickle cell patients face extended delays in receiving essential care and must contend with discrimination and suspicion that they are drug-seeking. Heather Avant explains that she feels compelled to dress impeccably to convince ER staff that she genuinely needs care. “I have to put on an entire show to get you to believe that I need care,” she says, highlighting the lengths to which she and other sickle cell patients go to receive timely treatment. 

Studies conducted over the years have consistently shown prolonged wait times for sickle cell patients in emergency rooms. For example, a 2013 study found that sickle cell crisis patients experienced 50% longer wait times than those with broken bones. Another study in 2021 reported that half of sickle cell patients had to wait at least two hours before receiving pain relief in the ER, despite medical guidelines recommending treatment within 60 minutes. 

Although medical associations have established guidelines for treating sickle cell pain in emergency departments, these best practices are not consistently adopted. A survey from 2020 revealed that 75% of emergency medicine providers were unaware of these guidelines, while 98% felt confident in their ability to treat sickle cell patients. 

In response to these issues, legislators have introduced bills to address the challenges faced by sickle cell patients. These bills aim to allocate funding for training doctors in best practices for sickle cell care and to provide resources to community organizations working to raise awareness about the condition. Some states have also established sickle cell task forces to enhance physician education and care coordination. 

Advocates for sickle cell patients emphasize the importance of data collection to track the disease accurately. Unlike other conditions such as diabetes or cancer, there is no national system for collecting data on sickle cell disease. Improved data collection would enable better allocation of resources to areas with the greatest need. 

For patients like Quannecia McCruse, balancing self-advocacy during extreme pain with the fear of irritating or alienating hospital staff is a constant challenge. McCruse describes the excruciating pain of a sickle cell crisis and the difficulty of convincing others that it is indeed that bad. Sickle cell experts recommend adhering to a patient’s individual pain plan, if available, and using online portals to verify patients’ medication and dosage requirements when they visit the ER.

These steps can help reduce ER wait times and alleviate patient anxiety about seeking emergency care. Despite the struggles, patients like Heather Avant remain hopeful that these changes will lead to better care for sickle cell patients. “I don’t fear dying,” says Avant, “but I do fear dying in the hospital.”  

News Reference  

​​For people with sickle cell disease, ERs can mean life-threatening waits. (n.d.). Retrieved from https://www.nbcnews.com/health/health-news/people-sickle-cell-disease-ers-can-mean-life-threatening-waits-rcna120202