During my 7 years as a nurse, I’ve taken care of patients with sickle cell disease. I’ve educated hospital staff and nursing students about pain, according to the Joint Commission, National Patient Safety Goals and Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey expectations. Ethically, we are taught that pain is whatever the patient says they are experiencing at the time. If the patient states that they are experiencing level-10 pain, we are to treat level-10 pain, with the goal of achieving a pain-free patient. Some providers believe that this expectation, along with the over-prescribing of opioids for acute pain, may have contributed to the rise in opioid overdoses, and thus the crisis that we are facing today.

From where I sit now as a case manager, I am often faced with reports of uncontrolled pain. There’s very little I can do, except to be empathetic. You see, many opioids are no longer covered by insurance, and with the crusade to end the opioid crisis in full swing, some providers are reluctant to write prescriptions for the remaining medications that are covered. These providers refer patients to pain management. The patients, in turn, search ravenously for a pain management doctor who will accept their insurance, usually to no avail. This may lead patients who suffer from chronic pain to over utilize the emergency room. Some turn to street drugs; either prescriptions that are being sold illegally or other drugs like heroin. Some patients even check themselves into psychiatric facilities. Chronic pain, after all, can lead to depression and sometimes suicide. Drug overdose was the number one cause of non-medical deaths in the United States in 2008, and the numbers have increased since then (CDC, 2017).

There are many types of chronic pain that are reported, like fibromyalgia and chronic back pain. Sickle cell pain does not make up a large percentage of these complaints. Sickle cell disease normally affects a small portion of African Americans, who are in the minority group of the national population. Regardless, patients with sickle cell disease are more likely to be accused of opioid abuse or addiction. Patients who live with sickle cell disease typically know which drugs work best for them. They’ve been living with this disease all of their lives. Signs and symptoms of sickle cell disease can show themselves as early as one year of age. As a healthcare provider, it can be alarming when a patient can tell you which pain medicine works best for them. “How do they know that?” we think. “They must get this medication an awful lot.” Instead of taking their word, and assuming it’s based on their life experience, these patients get labeled as “pain medication seekers” and “frequent fliers”. I’ll admit, I was once guilty of having this jaded mindset.

Until I did my own research.

The CDC keeps a Multiple Cause of Death database. According to their research, not only have the deaths associated with sickle cell decreased significantly over the last 20 years, but they also report that only a very small number of patients with sickle cell disease died from opioid pain relief overdoses. Between 1999 and 2013, 174,959 people died from opioid overdoses, and only 95 of those that died were sickle cell patients (The Opioid Drug Epidemic and Sickle Cell Disease; Guilt by Association. Ruta and Ballas, 2016).

Recently, certain diagnoses have been excluded as those that qualify patients to receive insurance coverage for prescribed opioid pain relievers. I was not surprised to see that patients diagnosed with cancer would still be covered for their prescription opioids. Rightfully so, since pain caused by cancer has been reported by patients to be excruciating. I was shocked, however, to learn that patients with sickle cell disease were excluded, even though sickle cell pain has been described as being just as painful as cancer pain.

The government has tasked researchers with finding alternate pain relieving options, such as non-opioid painkillers and non-pharmaceutical remedies such as meditation and acupuncture, in order to alleviate the need for opioid pain relievers. However, research shows that opioids are still the best pain relief for those who suffer from sickle cell disease. While the war on opioid overdose is needed, it has left patients with sickle cell disease to suffer due to the popular misconception that they are addicted to drugs simply based on their diagnosis alone. It has only exacerbated the stigma.

Why is that?

I was listening to a Sunday afternoon radio talk show that was hosting a local sickle cell advocacy group. The spokesperson was discussing how sickle cell research is one of the most underfunded research topics. The radio host asked why and the spokesperson said, “I have my theories.” I wanted her so badly to say that it was because of the healthcare disparities that plague our nation. Healthy People 2020 defines a Health Disparity as "a particular type of health difference that is closely linked with social, economic, and/or environmental disadvantages. Health Disparities adversely affect groups of people who have systematically experienced greater obstacles to health based on their racial or ethnic group; religion; socioeconomic status; gender; age; mental health; cognitive, sensory, or physical disability; sexual orientation or gender identity; geographical location; or other characteristics historically linked to discrimination or exclusion" (Healthy People 2020). There’s a direct correlation between sickle cell and Black people. The connection is glaringly obvious. And yet, we are too afraid to say, “It’s because it affects Black people”. 

So here we are, genetically inclined to be born with a disease that can leave us in crippling pain and denied coverage for the medication needed to control this pain. We are more likely to be denied access to care due to a myriad of disparities. It’s obviously going to take more than an act of Congress to fix this severely broken healthcare system. We can all see how that’s been working. It often feels like the same rules do not apply to Black people as they do for our White counterparts. While the crack epidemic criminalized the Black community, the opioid epidemic has turned drug abuse into a medical condition called Opioid Use Disorder. Just think how things might be different today if the crack epidemic had been treated as a medical condition.

I will leave you with this thought. We are going to have to work together, within the Black community, to educate each other, raise our own funds, do our own research, and end these disparities once and for all. We can no longer count on others to do this for us. We can no longer count on others to care more about us than we do ourselves. We must work harder to end the disparities in our communities if we want to see real change. And it all starts by using our voices.

Nicole Scott MSN, RN