Ask Dr. Kevin

Stigma in Sickle Cell Disease

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.

It’s important to understand that SCD is a life-long chronic disease. The repeated opioid treatments needed for pain relief over a patient’s lifetime often lead to a tolerance, requiring higher doses for adequate pain management.

The SCD individuals treated with opioids eventually learn which opioids and dose are best to relieve or minimize their pain. Many times, this can appear suspicious to health care providers and lead to delayed or inefficient treatment.

Are SCD patients addicted to pain medication?

Unfortunately, this is a common misperception about the disease—not just by ED staff, but by many people in general.

It’s important to highlight the difference between tolerance and dependence. An SCD patient may develop tolerance to opioids due to repeated opioid treatments and thus require higher doses, but this does not mean that they are dependent on—or addicted to—opioids.

In fact, 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. A study in the journal “Pain Medicine” found that in 2013, out of the 16,225 people who died of an opioid overdose, 99.94 percent did NOT have SCD. Thus, the approximately 100,000 individuals living with SCD are making limited contribution to the opioid epidemic.

How can primary care providers help to improve the ED experience for SCD patients?

Primary care providers and people with SCD need to work together to ensure there is a pain management plan in place that will help coordinate care to support long-term pain management.

Along with your primary care provider, the use of prescription drug monitoring programs (PDMP) can easily assist in discovering a patient’s prescription history to help combat the misperception that drug abuse is taking place. Creating individualized pain plans could help result in less frequent admissions, less waiting time in the ER, and shorter length of hospital stays.

Can you share tips on how people with SCD can better manage the ED experience?

First and foremost, finding ways that help to reduce and/or manage pain, such as stress reduction, plenty of fluids, and exercise, before it becomes an emergency is extremely important. If that doesn’t work, here are a few tips: 

  • Do not delay your visit to the ED when you begin to experience a pain crisis
  • Create a “pain plan” with your primary care provider, and either carry a validated copy with you at all times or have easy access to an electronic version
  • Carry a document with you at all times that summarizes previous emergency department stays
  • Work together with your hematologist and your primary care provider, to ensure your pain management plan is right for you

Additionally, caregivers of SCD patients can also play an important role in improving the ED experience by:

  • Recognizing the onset of a pain crisis and encouraging the patient to visit the ED
  • Accompanying the patient to the ED and ensuring that all useful documents are brought along
  • Providing support and distraction from the pain
  • Taking notes on interactions between the patient and ED providers

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