Ethleen Peacock was born in Sierra Leone, a country in West Africa, with sickle cell disease—a disorder in which red blood cells are misshapen and have difficulty moving through the body, causing intense pain episodes called “crises.”

“[My family] said I was always crying,” Peacock says. “In my country, we do not have [adequate pain medication], so for 25 years, I lived in serious pain.”

Today, Peacock is a digital media specialist and women’s advocate, often working with the organization Sick Cells to elevate those living with sickle cell. When she first moved to the United States, she encountered increased health care access—but it came with problems: “Sometimes, you need certain amounts of a pain medication, and they do not want to give it to you, because they feel you are an addict or you are just pretending to have pain.”

Sickle cell can cause severe pain and requires medical treatment. But when Peacock has gone to the emergency room in crisis, she has frequently encountered medical staff who don’t believe her, and has been made to “stretch” her medication, lengthening the period of time between doses. However, she gets better responses when her white boyfriend asks on her behalf. “They don’t listen to me,” Peacock says. “They don’t really care. They just don’t believe and respect the request of a Black person.”

Opiate access for BIPOC:
The numbers don’t lie

Kate Nicholson, executive director and founder of the National Pain Advocacy Center, underscores how common it is for BIPOC (Black, Indigenous, and people of color) and low-income individuals to not be prescribed opioids.

“Carmen Green [MD, an expert in pain management and health disparities] did early research about pharmacies not even stocking pain medication in Black neighborhoods,” Nicholson says. “Research shows some medical providers actually rate the pain of Black and Indigenous people as being less severe than their white counterparts. There are also lots of studies showing that [members of these populations] do not receive equal analgesia even after surgery.”

National restrictions on opioid prescriptions: ‘Increased pain and suffering’

In 2016, the Centers for Disease Control and Prevention (CDC) released the Clinical Practice Guideline for Prescribing Opioids. Its dosage limits caused great harm to the pain community, says Cindy Steinberg, national director of policy and advocacy for the U.S. Pain Foundation.

“There’s a big difference between what you would prescribe to an 80-year-old that’s 70 pounds or a middle-aged guy that’s 300 pounds, or a patient with an advanced disease as opposed to one in the early stages of a disease,” Steinberg says.

Doctors and prescribers began reducing or cutting off individuals’ dosages.

“They did that in an unsafe way. In a lot of cases, people were just immediately taken off opioids and they went into withdrawal,” Steinberg says. In 2019, the FDA issued a warning against rapidly tapering patients off of opioids, or abruptly halting their use.

“It’s caused people to go into depression or anxiety, and people had enormous amounts of pain,” Steinberg says. “Some people died by suicide.” The U.S. National Academy of Sciences reports rising mortality for adults in the United States, largely attributable to “deaths of despair” like these.

“The issue we have seen with policy regarding opioid prescribing is that we are only measuring success in terms of gross drops in opioid prescribing and not looking at patient outcomes,” Nicholson says. “The outcomes we have seen are increased pain and suffering, patients being dropped in care, and rising overdose deaths.”

Updated Guideline draft: Some problems solved, but more exist

This year, the CDC issued a draft revision of the Guideline, which included the removal of specific dosage limits and durations of opioid therapy for acute pain.

The original Guideline excluded cancer treatments, palliative care, and end-of-life care—meaning the entire Guideline is not meant to apply to the treatment of these conditions. In 2019, the CDC noted that opioid therapy beyond the scope of the Guideline could sometimes be used in the case of sickle cell. The new draft officially added sickle cell to the excluded condition list.

However, providers became apprehensive following the original Guideline’s release and discontinued filling opioid prescriptions even for individuals with cancer and end-of-life care.

“History has shown that these exclusions will not likely protect the patients the CDC is seeking to exclude,” Nicholson says.

Beyond that, dictating that only some conditions merit opioid treatment is wrong, advocates say.

“Most people in pain management believe pain is pain, and there’s not really a difference,” says Steinberg. “Pain is fundamentally a disease of the nervous system and brain, so excluding certain conditions is a false choice. Are these pain conditions more worthy of pain control than other conditions?”

Acknowledging disparities for BIPOC is a start, but further work remains

Unfortunately, BIPOC individuals often have to navigate racial bias on top of the already-existing stigma surrounding opioid use. The new Guideline draft notes “specific, long-standing disparities in the treatment of pain.”

“There is evidence that application of safeguards in opioid prescribing are disproportionately applied to Black patients,” the Guideline draft states. “Pain being differentially untreated or undertreated as a result of clinician biases persists and demands immediate and sustained attention and action.”

This acknowledgment is just a start, Nicholson says: “The opioid aspect [of disparities] is just the tip of a very deep iceberg.”    •

Kirsten Ballard