STAT

‘Every time it’s a battle’: In excruciating pain, sickle cell patients are shunted aside

Because of racial bias and inadequate training, patients having painful sickle cell crises often get poor care in emergency rooms.

Amy Mason had toughed it out for hours one day this past July, trying warm soaks and heating pads and deep breathing to soothe pain that felt like her bones were being sawed with a rusty blade.

She knew this was a life-threatening emergency of sickle cell disease, in which her misshapen red blood cells were getting stuck in her blood vessels like tree limbs in a storm sewer. But she delayed going to the emergency room; previous visits hadn’t gone well.

Just before midnight, Mason, 34, finally had her boyfriend drive her to a Mobile, Ala., hospital. She told the triage nurse that she was having one of the worst sickle cell crises of her life and that she was off the far end of the 1-to-10 pain scale. She was told to wait.

As the hours passed, Mason begged her boyfriend to take her to another hospital, then passed out from the pain. She awoke, she told STAT, to her boyfriend’s shaking her and pleading with her to stay with him. I can’t do this anymore, Mason whispered.

Daylight broke. Around mid-morning, an ER nurse told her, you know, we’re not a pain clinic. She gave Mason a small dose of the narcotic Dilaudid.

“Every time, it’s a battle,” Mason said about the ER, where the staff suspected her of faking her condition in order to score opiates and viewed her as a non-emergency because she “only” had pain. “Nobody cares about people with sickle cell.”

Read more: We’ve known for 50 years what causes sickle cell disease. Where’s the cure?

The U.S. health care system is killing . Racism is a factor — most of the 100,000 U.S. patients with the genetic disorder are African-American — and so is inadequate training of

You're reading a preview, sign up to read more.

More from STAT

STAT3 min read
Amid Privacy Concerns, Startup Becomes First Consumer DNA Company To Offer Anonymous Sequencing
Nebula will offer anonymous testing amid public concerns about the privacy of genetic data and law enforcement use of public DNA databases to identify suspects.
STAT3 min readPolitics
Pelosi’s Drug Pricing Plan Would Let Medicare Negotiate Prices For Up To 250 Drugs
The new legislation is more aggressive than prior concepts that had circulated among lobbyists and congressional staff this year.
STAT3 min readSociety
Canada Investigating A Case Of Vaping-related Illness
Health officials in London, Ontario, are investigating a case of vaping-related illness in a youth who suffered severe respiratory problems that have been linked to e-cigarette use.