Monday, May 6, 2013

Fighting ER Misconceptions About Sickle Cell

Based on an article by Beryl Lieff Benderly

An all too familiar emergency room experience for people with sickle cell disease is humiliating, scary and painful.
Just imagine you are wheeled into the emergency room, every limb on your body feels like large butcher knives are stabbing into your bones. You barely speak except to nod to acknowledge your name and medical record number. A nurse fills out every form, then sends you over to a corner to not disturb others with your cries. You feel like you are dying. Your body hurts, your mind wants to give up and your soul is ready to get out of this pain filled life. This is how it is for many people with sickle cell disease during an emergency room visit.
Last year, Paula Tanabe, an associate professor at the Duke University School of Nursing was commissioned by The National Heart Lung, Blood Institute (NHLBI) to explore this problem.

This issue is complex.

People with sickle cell experience acute and unpredictable pain, severe enough to require large doses of narcotics, is a well-documented feature of sickle cell disease. But Tanabe has found that too often patients in sickle cell agony are not handled properly by doctors and nurses in the emergency department because they erroneously think the patients may be running scams, seeking drugs.

She believes stereotyping is the number one barrier behind that wait: "After being cute little kids with sickle cell that everybody felt bad for when they had pain, now they become this African American 20-year-old asking for high doses of opioid narcotics." 

Ms. Tanabe says better training of health providers and changes in emergency room procedures can improve the care that sickle cell patients receive.

There is hope and help is coming.

Currently, a team has been assembled to update the NHLBI Guideline of Treatment of Sickle Cell Disease. The guideline will be principally aimed at primary care practitioners and their patients to help manage the ongoing processes of the disease. The guideline will also be valuable to hematology specialists and their patients.

There will also be a webinar to discuss these updated guidelines in September 2013 through The Sickle Cell Information Center website.

Personally, I have experienced bad emergency room treatment as well. And, I'd like to thank NHLBI and Ms. Tanabe for their efforts to identify and address this issue.  I appreciate your help in this area.


  1. this is wonderful news for people with scd as we can all relate to that scenario

  2. Yes you're right Ade this is good news. Adults with sickle cell disease are getting help to remove stigma associated with this disease.

  3. I do agree that sickle cell patients suffer from stigmazation and I strongly believe that this misconception happened becuase of two reasons first the kind of narcotics therapy that approached in treatment secound some sickle cell patients that daily goes to day care center (365 days a year) and in forcing to get treated only by narcotics medications such as morphia or else
    Which is givibg false impression to health workers that all sickle cell patients are drug seekers

    1. Ali Darwish

      Shame on you to publish a reply like that you are a staff nurse and you don't have any idea about voc and from where SCD patients receive morphia from medical source or from the street and MOH protocol for SCD patients is an administrative protocol not medical protocol which is not acceptable by WHO; why you didn't speake or tell the truth how many cases death in Bahrain within last 5 years.
      Shame on you to be a nurse staff be honest with yourself...

  4. This is not about drug abuse, we know that people with SCD need help with pain. This is about the misconceptions that (some) ERs have about people with SCD. In all areas of life there are some who "abuse" the system. Overall, we should focus on the many who "need" help & and not seeking drugs. Stigma does not descern one type vs. the other.

  5. Wow. This is such a big issue it's insane! I wish there was a way to collectively work with all hospitals on changing ER protocol & staff training. I was told each hospital is different so we'd have to tackle it one at a time. We have a long way ahead of us.