Before Serena Thompson seeks treatment in a hospital emergency department for “excruciating” pain brought on by her sickle cell disease, she does something many people would never consider in the middle of a health emergency.
She puts on a nice set of clothes, and brushes her hair, hoping that her tidy appearance will ensure staff will “take me serious.”
“I thought I was the only one that noticed that, but I found out others have to do the same thing as well,” said Thompson, a 47-year-old Black woman from Scarborough, Ont., who has been suffering through these episodes since she was a little girl.
People who have sickle cell disease, one of the most common inherited blood disorders, face racist barriers to appropriate treatment in hospital emergency departments, patients and their physician allies say.
The lifelong condition affects somewhere between 5,000 and 6,000 Canadians, most of them people of colour.
Sickle cell disease, usually diagnosed in infancy, affects hemoglobin, the molecule in red blood cells that delivers oxygen to the body. The condition causes bouts of severe anemia, puts patients at risk for life-threatening infections, and often requires regular blood transfusions.
It also causes random episodes of severe body pain that occur when misshapen hemoglobin molecules become lodged in the patient’s blood vessels.
“I experience excruciating pain in my joints where most of the pain is in my shoulders,” said Thompson.
Condition is misunderstood, stigmatized
These episodes, called pain crises, require timely treatment with high doses of opioid pain relievers, often in a hospital setting.
But the emergency department is “the last resort” for Thompson after she’s done everything she can to manage pain with meds she has at home, she told White Coat, Black Art host Dr. Brian Goldman. By then, the pain is often unbearable.
“The stigma for people with sickle cell coming into a hospital is just, you know, [that we’re] looking for medication, we’re drug seekers,” she said.
Because the majority of sickle cell disease patients are people of colour, they’re less likely to have emergency department staff believe that their pain is real, said Thompson, who is also vice-president of the Sickle Cell Association of Ontario, a non-profit group that helps people with the disease navigate the health-care system.
If they don’t receive adequate treatment at one hospital and end up going to another, sickle cell patients are accused of “hospital hopping” to max out prescriptions to opioid pain relievers, she said.
Thompson said she’s been pointedly asked what she was doing at a second emergency department.
As soon as I step into the emergency room, I feel that I’m labelled.– Serena Thompson, sickle cell disease patient and advocate
“I felt that type of question — ‘Why did you come to this hospital if you were already at one?’ — it felt like they thought I was hospital hopping for different medication and treatments,” she said.
“As soon as I step into the emergency room, I feel that I’m labelled.”
But COVID-19 has forced her to confront her anxiety about the emergency department, because simply being Black puts her at higher risk for the virus.
“I’m scared that because of my illness, you know, adding COVID to it is a complication, and I don’t want to take that chance.”
People with sickle cell disease are severely immunocompromised, said Dr. Jacob Pendergrast, a hematologist and associate medical director of blood transfusion medicine at the University Health Network (UHN) in Toronto. That’s in part because of a buildup of hemoglobin cells in the spleen that enlarges and damages the infection-fighting organ, prompting surgical removal.
“You lose your spleen often by the age of 10,” he said.
That’s troubling given that being from any racialized group makes you more susceptible to COVID-19, said Pendergrast.
It’s part of “a much more troubling structural problem in our society wherein racialized communities are more likely to be exposed … because of the type of work that they do, the type of transportation options that are available to them, and because of the type of housing they are forced to live in making it difficult to physically distance.”
Dr. Jennifer Bryan, an emergency physician with UHN, is also concerned COVID fears will keep these patients away.
“I worry about patients with sickle cell disease not coming in for care when they need it and experiencing greater complications because of a delay,” Bryan told White Coat, Black Art.
“What we know in terms of pain crises in particular is that the earlier the pain is managed, the more likely it is that patients will not need to have an admission to hospital. So delaying care means that the pain is going to get to a level where the patients aren’t going to be able to have their pain managed adequately enough as outpatients, but are increasing the risk that they’re going to have to be admitted to hospital.”
She said stories like Thompson’s, of poor treatment in emergency departments, are both “heartbreaking” and “very common.”
“In the emergency department, my role is to be there to help make people’s worst days better, and the idea that we have patients who are reluctant to come in for help is the opposite of what any of us would hope,” said Bryan, who is also part of a sickle cell disease working group at the UHN, and an assistant professor at the University of Toronto.
“The impacts of stigma and racism in sickle cell disease are well known, and the ways that patients experience that directly are through barriers in getting the care they need in the emergency department.”
Bryan said it’s not unusual for her to hear from patients who say they feel they weren’t believed when they came to emergency. That’s prompted her to confront colleagues who are less familiar with sickle cell disease about their misconceptions, with an aim to making emergency departments more comfortable for people who suffer from the condition.
Sickle cell research poorly funded
The stigma against the disease is also reflected in how research dollars are allocated.
A recent study in the Journal of the American Medical Association (JAMA) found that funding was around $800 per person with sickle cell disease in the United States, but closer to $2,800 per person with cystic fibrosis, said Bryan.
Pendergrast said cystic fibrosis — which affects primarily white people — also gets more curriculum time at medical school.
As a result, sickle cell patients get inconsistent care when they need help the most.
“I would not want to say that every visit to an emergency department goes horribly. Many are very invested in providing good quality of care,” he said.
“But sometimes [patients] encounter somebody who, at best, doesn’t know much about sickle cell, but at worst, are suspicious that these patients are lying and are seeking drugs.”
In fact, the pain experienced by these patients is so severe that an Ontario Ministry of Health guideline says they should be treated with a first dose of pain medication within 30 minutes of arriving at an emergency department, then small doses every few minutes after that, said Pendergrast.
For Thompson that can mean the difference between going home or being admitted to the hospital for anywhere between three days and three weeks.
“Sometimes we need the medication at its highest point to hit the pain as hard as it can, then we’re not suffering long enough where we have to be admitted,” she said.
Waiting on change
One thing the pandemic has done is draw attention to racial inequities in the health-care system.
Thompson said the current reckoning around systemic racism has also opened up a conversation around treatment of people with sickle cell disease. But she’s not sure yet if it will make a difference.
“I don’t know if I’ll ever see a change.”
“I’m a bit skeptical about everything. Until, you know, our primary caregivers acknowledge what’s happening and what’s been going on, then the conversations can go to a next level where something is actually being done about it and implemented.”
She and other advocates within the sickle cell community want to see a protocol in every hospital emergency room that guides staff on how to take care of them.
Bryan said the first step toward meaningful change is having the medical profession acknowledge “we have not been doing this well in the past.”
“But I really do see that there is an opportunity for change here, that this needs to be a commitment from all of us as health-care providers to recognize the bias and the limitations that our patients have been facing and to find ways to address them.”
Written by Brandie Weikle. Produced by Sujata Berry.
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