Sickle cell pain crises can mean long, agonizing waits for help at hospitals
Chavez, who is Hispanic, said she confronts “doubt everywhere I go” because sickle cell disease primarily affects Black Americans. (Those who are Hispanic can be of any race.)
Paula Tanabe, a professor of nursing at Duke University who has spent decades researching ways to improve care for sickle cell patients, said a confluence of factors adds to the racial bias that patients may face.
“Emergency rooms are incredibly overcrowded, at rates that we have never seen before, and that’s for everyone,” Tanabe said.
Some state legislatures have established sickle cell task forces to improve physician education and care coordination. But advocates for patients said investment in data collection to track the disease is also important. No national system exists to collect data on sickle cell, unlike other conditions such as diabetes, cancer and Alzheimer’s disease.
“I’m 32 and we’ve been saying it’s 100,000 my entire life,” said Quannecia McCruse, who co-founded the
Sickle Cell Association of Houston. “I know there’s more. I know people are going uncounted.”
Eleven state-led data collection programs currently exist. Improved data would allow funding to be allocated toward the areas with the greatest need, sickle cell patient advocates said.
Texas had an opportunity to join those efforts. This spring, the state legislature passed a bill with broad bipartisan support to create a sickle cell patient registry, but Republican Gov. Greg Abbott vetoed it, saying it would compromise patient privacy.
“That was a bad excuse,” McCruse said. “We have a cancer registry already, and everyone’s information is safe. That registry would have gone a long way to help.”
While progress grinds slowly, patients like McCruse say they’re forced to balance advocating for themselves during bouts of excruciating pain against the need not to irritate or alienate hospital staffers.
“It feels like someone is taking a Taser and shocking the crap out of me. Or when it’s really bad, and it feels like shards of glass are just moving through my veins,” McCruse said. “It’s very, very painful. And you’re telling somebody whose body is torturing them that it’s not that bad?”
Alexis Thompson, a hematologist who treats sickle cell patients at the Children’s Hospital of Philadelphia, said she works with her pediatric patients to develop self-advocacy skills. But sometimes that backfires.
“The great irony is patients who are well-informed and capable of selfadvocating are being accused of being manipulative, because they are capable of articulating very clearly what’s effective for them down to the name of the medication or the absolute dose,” Thompson said.
Sickle cell experts recommend that doctors adhere to a patient’s individual pain plan, if available. Thompson said those plans, which document patients’ diagnoses alongside a recommended medication and dosage, can be uploaded to online portals that patients can pull up on their cellphones when at a hospital to verify what they need.
Avant hopes such steps can help decrease emergency room waits while easing their anxiety about seeking care.
“I don’t fear dying,”
Avant said, “but I do fear dying in the hospital.”