JACKSONVILLE, Fla. -- Kiara Owens, 24, lives with pain 24 hours a day. She has Sickle Cell Disease.
"It is scary to realize that this illness one day is going to kill me," she said.
She also has to live with a stigma that affects when and how she gets her much needed medication.
"I have been labeled a drug seeker," said Owens.
Owens said given her unexpected bouts with excruciating pain, she has to go to an emergency room more than she wants to and then it becomes a problem.
"They won't give you the medicine because they fear you're addicted to narcotics," said Owens, "and you're just pretending to get that medicine."
The Florida State College at Jacksonville student said three years ago she went to an ER and was labeled a "Drug Seeker" and it has followed her since.
"I've had doctors who have gotten in my face and told me 'you're a drug addict you're just here for medicine and I'm not going to give it to you so leave,'" said Owens, "It is hard because you to go back home in pain and pray to God the next hospital will help you."
Sometimes they do, she said, but most emergency rooms do not help. And it is not just her.
"A majority of people with sickle cell in Jacksonville, Florida are labeled 'drug seekers,'" said Owens.
Gwen Owens said her daughter has a challenge living with the debilitating disease, adding the stigma of drug seeker is too much.
"I'm tired," said Owens, "I'm tired."
She said she's tired of having to fight for what her daughter needs to fight the disease.
"I sit there and watch it," she said, "I see how they treat her, it hurts."
Her daughter is a Medicaid patient, and when there's a crisis, she is often referred to an emergency room.
"I'm in pain every day, just about," said Kiara Owens.
Why are sickle cell patients in crisis being labeled as drug seekers by certain healthcare providers? That's what the Owens family would like to know.
"We need some people that care and understand what our kids are going through," said Gwen Owens, "We don't have a lot of people that care and it is sad."
Jacksonville has the C.B. McIntosh Sickle Cell Center but the attending physician is only there on Thursday and no one could answer questions.
Frank Reddick is COO of the Sickle Cell Association of Florida.
"This is a problem all over Florida," said Reddick.
And Reddick said it is mostly with patients who are on Medicaid.
"We have ER physicians who have little knowledge about the Sickle Cell disease and how to treat those affected," said Reddick.
He said those who suffer are not drug seekers. They are seeking relief from their pain and suffering.
Reddick said his organization is now working on a Medical Information Card that Sickle Cell patients can carry. It is now being used in some communities.
So how can you get your name removed from the so called list of drug seekers? Reddick did not know how, but has a suggestion for sickle cell patients.
-Have your primary physician chart out all of your prescriptions
-Have your primary physician's number and after hours contact phone number available
-Carry that information with you at all times
More than 100,000 Americans are living with the sickle cell disease. It is prevalent among African Americans and Hispanics.
First Coast News