Efforts to curb narcotics abuse are backfiring for sickle cell patients who are already undertreated for pain.
When Tanjila Bolden-Myers had hip surgery, she went to her pharmacy for medicine to bring down the swelling. But the pharmacist refused to fill her prescription because Bolden-Myers had picked up Vicodin the week before.
"The Vicodin I have locked in a safe for when I need it," Bolden-Myers said from her office at a St. Louis high school. "But they don't know me like that."
Like many others who live with sickle cell anemia, Bolden-Myers relies on the opioid Vicodin to manage severe pain episodes that are a hallmark of her condition.
The country is in the middle of a prescription drug abuse crisis that killed almost 13,000 U.S. residents in 2015.
Many emergency rooms have established guidelines to reduce the number of doses doctors prescribe. For people who are already undertreated for pain, this policy can backfire.
"I have had to title drop, name drop, to say I have this degree and that degree, and say that I'm a certified trade counselor," Bolden-Myers said.
While on a trip to Central Missouri, Bolden-Myers suspected she had an infection that made her pain worse than usual, so her family took her to a local emergency room. She says nurses there accused her of being addicted to painkillers and faking pain to get medicine.
The feeling of powerlessness was overwhelming.
"And I'm in tears, or I'm crying, or I'm rocking and moaning, and you want to assume that I'm drug seeking?" she recalled, shaking her head in disbelief.
In 2010, a study at Northwestern University found that people with sickle cell disease waited almost twice as long as patients with kidney stones in the emergency room even though they rated their pain higher on a 1-to-10 scale.
There is no blood test to prove you are in pain, no objective proof.
Six of the seven sickle cell patients interviewed for this story last spring said they have been accused of pill seeking when they were going through a pain crisis.
Just one person shared a story of abusing prescription opioids for a short time.
Hematologist Allison King at Washington University in St. Louis said sickle cell patients are just about as likely to abuse opioids as anyone else. The patients King sees are often poor and black. King said assumptions about what an addict looks like can affect a doctor's judgment.
"So if you imagine that I'm a 20-year-old black male, who comes into the ER, and I say I have sickle cell anemia, [that] I usually need 3 mg of Dilaudid a couple times to get my pain under control, the default is this is a young black kid looking for drugs," King said.
The reality is white people are the fastest growing demographic of opioid abusers. Non-Hispanic whites made up over 80 percent of overdose deaths in 2014, according to the CDC.
Doctors say they have to make the call to prescribe without much information. And the stakes are high—two million Americans are addicted to prescription painkillers, according to some estimates, and physicians can lose their license if they overprescribe.
"I do think we have a tendency not to give pain medications because I think there's this thought that we do have a lot of seekers," said emergency-medicine physician Paul Pfeiffer of SSM Health St. Mary's Hospital in St. Louis County.
Pfeiffer estimated that he sees one or two people with a pain pill addiction each day.
In every U.S. state except for Missouri, doctors have a computer database where they can look up how many prescriptions a patient has filled.
The monitoring system can alert a physician if a patient is 'doctor shopping'--going to multiple places to get pills. Missouri doesn't have a database like this. The opposition comes from a prominent state legislator and physician who argues that having this database would be a violation of personal privacy.
Pfeiffer said he believes patients with sickle cell should get pain pills, but the decision to prescribe narcotics is left up to the physician on duty.
"[Patients] don't have a tattoo right up on their forehead that says 'I'm seeking.' But I think you see the personality, the way they respond to some suggestions of what you're going to do," Pfeiffer said. "Some become irate or they're just inappropriate, you know there are some addictive patterns."
Pain management experts argue that putting doctors in this situation doesn't work.
One patient advocate described it this way: Even seasoned crime investigators have a hard time discerning a lie. What makes us think doctors can do it?
In the meantime, sickle cell patients who feel stereotyped stick together for support.
They swap phone numbers and drive to the emergency room together if a friend is going through a crisis. They vouch for each other.
Every month, patients and family members gather at the Sickle Cell Association office in St. Louis. One evening in April, there were plates of nachos to share, and several people called in to listen through a speakerphone.
Ericka Greene, 45, who has lived with sickle cell since she was a baby, led a discussion about how to navigate a visit to the emergency room. Above all, she said, try to stay calm despite the pain.
"Because you tend to get better care when you're respectful, when you know how to conduct yourselves," Greene said.
The support group talked about what steps to take if you have a problem in the ER. If you're in the ER with someone who can vouch for you, Greene said, ask your companion to speak with a supervisor and file a complaint.
It is unlikely Missouri will implement a statewide drug database soon. Doctors in the St. Louis area, however, may get more information later this year. Frustrated by the lack of prescription monitoring, St. Louis County's Department of Health is developing a local database of its own and inviting other cities and counties to join the network. It's slated to be up and running in April.
The sickle cell patients interviewed for this article said the database could be a small step toward challenging the stereotypes they face.
A version of the article first appeared on www.stlpublicradio.org.
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