Ask Dr. Kevin: Stigma in Sickle Cell Disease: How It Impacts ED Care

Dr. Kevin Williams (Chief Medical Officer, Pfizer Rare Disease Unit) | 4/5/2018, 2:07 p.m.
The opioid crisis in the United States is at an all-time high, impacting thousands of Americans every day.
Dr. Kevin Williams, the chief medical officer for Rare Disease at Pfizer, says that there is no evidence to support the notion that SCD patients have any more likelihood of being addicted to pain medication compared to anyone else. Contributed

The “Ask Dr. Kevin” series is brought to you by Pfizer Rare Disease in collaboration with the National Newspaper Publishers Association (NNPA) to increase understanding of sickle cell disease.

The opioid crisis in the United States is at an all-time high, impacting thousands of Americans every day.

What may surprise you is the impact this crisis has on people with medical conditions that cause severe pain, particularly when they receive treatment in the emergency department (ED).

In light of the current opioid crisis, ED staff have become much more vigilant in monitoring suspected drug abuse. This can have particular implications for people with sickle cell disease (SCD), whose top reason for visiting the ED is to seek relief from the debilitating pain crises associated with their disease.

Unfortunately, ED staff may doubt the legitimacy of the high level of pain relief needed by someone with SCD, and this suspicion has contributed to the stigma that SCD patients are “drug-seeking.” When I was in medical school more than 30 years ago, ED staff treated SCD patients as drug seekers, and opioid abuse wasn’t even considered a crisis then. In light of the current opioid crisis, this stigma has become magnified.

SCD is a lifelong disorder most common in people of African descent and causes red blood cells to form sickled shapes. People with SCD often experience frequent acute pain episodes, called vaso-occlusive crisis (VOC). Currently, treatment for VOCs is limited and primarily involves administration of fluids and pain management, which often includes treatment with high levels of opioid pain medications.

As a result of the stigma related to drug-seeking, the patient is delayed in receiving the adequate and timely pain relief they so desperately needed. In fact, a study published in the “Clinical Journal of Pain” found that people with SCD wait an average of 30 minutes longer in the ED for pain medication when compared to people with other extremely painful conditions, like kidney stones.

Greater understanding of SCD and the pain experienced by people who suffer from the disease is urgently needed to help ensure that stigma and misunderstanding do not stand in the way of receiving adequate and timely medical treatment.

I’m here to answer the most common questions about pain related to SCD in the hope that this information will increase understanding and address some of these misperceptions.

Are SCD pain episodes really that severe?

Yes, they most certainly are. These episodes are characterized by excruciating, debilitating pain. The pain often occurs without any warning—then may worsen over time or escalate suddenly. Nearly all people living with SCD experience these pain crises at some point, but the frequency is variable and unpredictable. Some people with SCD experience six or more pain crises a year.

Why do SCD patients receive pain medicine at such high doses?

Early and aggressive pain management is a priority when treating a SCD patient who is experiencing pain episodes, as multiple studies have demonstrated that more frequent severe episodes of VOC are associated with death.