Racially profiled sickle cell disease patients say they face poor care
TORONTO -- Some 5,000 Canadians suffer from a disease that can leave them in excruciating and paralyzing pain during an attack, and when left untreated, can be deadly. But for many patients who seek medical help during a crisis, they are instead racially profiled and discriminated against, resulting in poor health care and potentially deadly consequences.
These patients have sickle cell disease, a genetic disorder that is more common among certain ethnic groups, including those of African, Arabic, and Indian descent. As a result, experts say many patients experience racism and are often denied proper or adequate care.
Valissa Providence, a 30-year-old mother who lives in Edmonton, Alta., suffers several attacks every month.
“Normally, it's in my joints ... It feels like someone's stabbing with a very sharp knife, and they'll go in my muscle or sometimes even to my bone, or starts from inside my bone outwards,” she told CTV News, describing a throbbing pulse that is “really paralyzing.”
She can tell most of the time when an attack is about to happen.
“I can feel [it] going in that direction. It's almost like the pain is so much that … even laying down still hurts. So anything that I do, it doesn't matter, it just will get worse and it hurts and I have to require immediate medical attention to get it under control.”
But a trip to the emergency department often means grappling not only with the physical pain, but also having to convince medical staff that her pain crisis is real. Providence says hospital staff often treat her like a drug-seeking addict instead, downplaying her pain. Even a special health card she carries from the Canadian Hemoglobinopathy Association that identifies her diagnosis, treatment, and medication requirements, as well as her doctor’s contact information does not protect her from the discrimination.
“One doctor, I told him, ‘Here's my card,’ to give it to him, and he refused to even look at it,” she said.
“They don't believe that I have this illness, they don't believe that I'm in pain. They believe that ... I'm a drug addict where they don't want to give me the meds that are stated and required for sickle cell patients to get.”
Providence says she has had upwards of 10 hospital visits where the medical staff did not listen to her or give her the medication she needed.
“It scares me. And it's like, who else am I supposed to run?” Providence said.
“As soon as I come in, maybe I'm dressed in sweatpants or you know a hoodie, something comfortable. And maybe for them I don't look sick, so they just automatically think that, okay, well, she's drug-seeking. And I feel like I wouldn't get the same treatment if I was another race.”
Sickle cell disease is part of a group of inherited red blood disorders that cause sudden and overpowering pain, according to the Sickle Cell Awareness Group of Ontario.
“The World Health Organization (WHO) estimates the disease affects nearly 100 million people worldwide. Over 300,000 children are born every year with the disorder and many die in childhood. Those who survive into adulthood often face a life of chronic disability and premature death unless therapy can be provided.
"I'M PUTTING MY LIFE, MY HEALTH, IN YOUR HANDS"
The disregard some patients face even leads them to avoid getting medical help at all.
Toronto-resident Serena Thompson told CTV News that she avoids a specific hospital because of the poor treatment she received the last time she was there.
“Being treated like a criminal or, a bum, or — I can't even explain it,” said Thompson, who is an advocate and president of the Sickle Cell Association of Ontario.
“We dread that part where we have to explain ourselves, we dread the part where we have to prove that we are having a crisis.”
People with the disease may look well on the surface, but are “experiencing terrible pain,” blood disorder specialist Dr. Madeleine Verhovsek explained.
“They're saying, ‘I'm here, I have sickle cell pain, I need morphine, or I need hydromorphone or other opioid treatment,’ and they're getting looks, they're getting questions, they're encountering delays in the treatment of their pain, and they're feeling as though they're not being heard or receiving the treatment that they need in those instances.”
But for patients with the condition, avoiding healthcare is risky. Those episodes of pain are a sign of oxygen starvation in the tissues caused by the disease.
According to the Ontario Clinical Handbook for Sickle Cell Disease, normal oxygen-carrying red blood cells are shaped like a round disc, but those with this disease have cells that can be shaped like a sickle. They can stick together, causing blockages that deprive the body’s tissue of oxygen, which causes pain and even organ damage.
The pain can occur anywhere in the body, come on suddenly, and last anywhere between a few hours to even several days. Complications that can occur include an acute stroke, aplastic crisis (severe anemia), priapism (painful erections that last a long time), infection, and myocardial ischemia (when blood flow to the heart is reduced, preventing enough oxygen from getting to the heart muscle).
“It can grow into something much bigger, including very serious complications like stroke, or blockages in the lungs, which is called acute chest syndrome, or other blockages in other critical organs,” said Verhovsek, who is a hematologist at St. Joseph’s Healthcare in Hamilton and an assistant professor at McMaster University.
“Things can get quite serious quite quickly, if their medical concerns aren’t looked after promptly.”
That’s why doctors and advocates are demanding a national standard of care that would recognize sickle cell crises as medical emergencies, and ensuring patients are treated quickly and fairly without discrimination.
“It's kind of scary, because my biggest fear growing up, and even now, was to have a stroke from this illness, because that could mean I'm not the same, I can't use the side of my body, I could die,” Providence said.
Verhovsek says patients should be able to get treatment within 30 minutes of meeting with the triage team, or within an hour of arriving at the emergency department.
“One of the most important things that we would like to see is that patients receive pain management as quickly as possible,” she said.
It is something the Sickle Cell Association of Ontario also wants, says Thompson.
“We do want to see doctors recognizing that a protocol in the ER would help as a guide in how to treat patients coming in with [a] sickle cell crisis,” she said.
There is some progress. In December 2017, Ontario published a Clinical Handbook for Sickle Cell Crisis through the Provincial Council for Maternal and Child Health & Ministry of Health and Long-Term Care and last November, the NDP introduced a new bill called the “Improve Access to Health Care Act” to legislate a universal protocol that would ensure a high standard of care for Ontarians living with sickle cell disease.
Meanwhile, experts say doctors should be better educated so all patients can receive the care they need.
“These are often Black or [other] racialized individuals, and we know without a doubt that unfortunately we've got a systemic racism problem in Canada,” said Verhovsek.
Providence says Black nurses have spoken up for her to say “this is not right,” proof that others are noticing she is not getting the care she requires or is not being taken seriously because she is Black.
“If I'm coming to the hospital and I'm putting my life, my health, in your hands, I don't need you to make judgments just because of my skin colour,” said Providence.
“I am a person with a disability, with an illness, and I require the same treatment and respect as everybody else.”
With files from CTVNews.ca writer Alexandra Mae Jones