Sickle Cell Patients Are Left In Pain, As Hospitals Cut Back On Opioids : Shots - Health News People with sickle cell disease aren't fueling the opioid crisis, research shows. Yet some ER doctors still treat patients seeking relief for agonizing sickle cell crises as potential addicts.
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Effort To Control Opioids In An ER Leaves Some Sickle Cell Patients In Pain

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Effort To Control Opioids In An ER Leaves Some Sickle Cell Patients In Pain

Effort To Control Opioids In An ER Leaves Some Sickle Cell Patients In Pain

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AILSA CHANG, HOST:

Pain crises are a hallmark of sickle cell disease. It's a disease affecting 100,000 Americans, many of African or Hispanic descent. And for many of those people, the only way to control that pain is with powerful opioids, the same kind of drugs that are fueling the country's addiction crisis. That has made E.R. doctors rethink how they offer that medicine. Sam Whitehead at WABE in Atlanta reports.

SAM WHITEHEAD, BYLINE: India Hardy says having sickle cell disease means pain can strike at any time. It comes on when her red blood cells, forced into a sickle shape by the genetic condition, block her normal blood flow. Hardy sits on her mom's porch in Athens, Ga., and remembers a recent pain crisis.

INDIA HARDY: It was time for my daughter to get on the bus, and she's too young to go on her own. And I was in so much pain, I couldn't walk, so she missed school that day.

WHITEHEAD: The nearest specialized clinic for sickle cell patients is almost two hours away, and Hardy doesn't have a car, so she often goes to her local hospital, St. Mary's, for pain relief. Hardy says until recently, doctors in the emergency room would give her direct shots of the powerful opioid hydromorphone.

HARDY: Now they would actually put that shot in a bag which is full of fluids. So it's like you're getting small drips of pain medicine, so it's like torture.

WHITEHEAD: But that's not how hospital staff see things. Troy Johnson is an E.R. doctor at St. Mary's. Giving patients IV drips of pain medication instead of direct injections was his idea.

TROY JOHNSON: We have given sickle cell patients a pass on - they don't get addicted, which is completely false. And for us to not address that addiction is doing them a disservice.

WHITEHEAD: Johnson says his own son has sickle cell. He's seen the way people with the disease are exposed to opioids from an early age. That experience informed the policy change. Hospital officials say they also consulted national guidelines for treating sickle cell. Dr. Lewis Earnest leads the ER.

LEWIS EARNEST: We're trying to alleviate suffering, but we're also trying not to, you know, create addiction. And so we're trying to find that balance. Sometimes, it's harder than others.

WHITEHEAD: But those same national guidelines also say doctors should reassess patient pain frequently and adjust levels of opioids as needed. Earnest says St. Mary's new IV drip protocol is for all patients who come to the ER frequently for pain, and the hospital says most of their sickle cell patients are fine with the change. But some people who work closely with sickle cell patients say the drip delivery approach seems unusual. Dr. Biree Andemariam is with the Sickle Cell Disease Association of America.

BIREE ANDEMARIAM: When individuals living with sickle cell disease go to emergency departments, they're living in extreme amounts of pain.

WHITEHEAD: Andemariam says that's why it's more common for ERs to give those patients direct pushes of medication, not slower drips. She says people with sickle cell aren't feeling the opioid crisis. They're not more likely to abuse the drugs than others.

ANDEMARIAM: So if anything, individuals with sickle cell disease in our country have really been caught in the crossfire when it comes to this opioid epidemic.

WHITEHEAD: Andemariam says ER doctors need more education on how to treat sickle cell pain. That's one goal of the American College of Emergency Physicians. The organization says the opioid epidemic has made it harder for sickle cell patients to get the pain medication they need. They've also asked federal health officials to speak out about sickle cell pain and fund research on how to treat it without opioids. Dr. Jon Mark Hirshon is vice president of the group.

JON MARK HIRSHON: We in the physician community are looking for ways to make sure they get adequate pain relief. We recognize that the process is not perfect, but this is what we're striving for to make a difference.

WHITEHEAD: But back on her mom's porch in Athens, Ga., India Hardy says she feels stuck, and she's not alone. Her brother and a friend, both with sickle cell, also report trouble finding pain relief at the St. Mary's ER.

HARDY: It's just really frustrating because you go to them for help, expecting to get equal help, and you don't.

WHITEHEAD: Hardy filed a complaint with the hospital, but she says nothing has changed. At this point, she's considering leaving her family and friends behind in Athens to move closer to a sickle cell clinic. She hopes doctors there will do a better job helping control her pain. For NPR News, I'm Sam Whitehead in Athens, Ga.

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