Do Native Americans Need a Pain App?

By Crystal Lindell

The University of Oklahoma has received a $3.4 million dollar federal grant to help Native Americans with chronic pain – and they’re going to spend all of it on an app.

The money, which is coming from a five-year National Institutes of Health grant, will go towards building the first chronic pain mobile health (mHealth) app designed by and for Native Americans. Nearly one in three Native Americans live with chronic pain, more than any other segment of the U.S. population.

In a news release about the project, the university makes clear the app will only provide behavioral and psychological assistance for pain, because “medications, while commonly prescribed for chronic pain, are also easily abused.” 

Neither of those things are true. Many Americans with chronic pain find it nearly impossible to get opioid pain medication, so they are definitely not “commonly prescribed.” And most pain patients do not abuse their medication.

The researchers referenced our country's history of horrific treatment of Native Americans — including the fact that Oklahoma was the end of the Trail of Tears — to justify this whole endeavor.

“Native American communities have experienced intergenerational trauma, and they continue to experience contemporary traumas,” said Jamie Rhudy, PhD, a professor in the OU Department of Health Promotion Sciences. “These are the types of experiences that can place our brains on high alert and amplify pain.”

It’s infuriating to read that rationale, knowing that programs like this only serve to keep an effective pain treatment away from people who need it: opioids.  

Researchers say the app will focus on things like stress management, anxiety, sleep hygiene, physical health and diet.

“All of these can be drivers and amplifiers of pain,” said Rhudy. Then, in a quote only someone without chronic pain would say, he added this:

“Chronic pain is largely a construct of the brain. We’ve been taught that we have pain because maybe our joints wear out, or we have tissue damage, but everyone experiences pain differently, which our mHealth therapies will recognize and respond to,” said Rhudy.

In short, it’s all in your head.

Then he adds: “Sleep, stress and discrimination are not variables easily targeted by medications, but they do respond well to targeted psychological and behavioral interventions.”

Actually, as a chronic pain patient myself, I can tell you that sleep and stress are both easily targeted by medications. It’s just that many of those medications are controlled substances that have been blamed for our nation’s drug problem.

We asked Tamera Lynn Stewart, an Oklahoma patient advocate, what she thought of the app. She’s glad it's being developed with direct input from Native Americans, but says it “misses the mark pretty badly” in removing barriers they face in getting pain care.  

“My problem isn’t that they’re offering behavioral tools; it’s that we’ve spent years restricting, stigmatizing, or taking away treatments that actually help people, and now we’re approaching an already underserved population with an app while heavily emphasizing discrimination and psychology as drivers of their pain,” said Stewart, National Director of the P3 Alliance, a patient advocacy group. 

“We say they are disadvantaged in receiving quality care for their pain without admitting much of it was caused by the same policies incentivizing this study. All while forgetting to mention that many historical and current drug war policies criminalized or removed the very tools the indigenous population once relied on to treat their pain.” 

Stewart is worried that a pain app designed for a very specific high-risk population will eventually be deployed as a treatment for everyone else – something the pain community has seen before.

“I’m all for adding options. I’m much less enthusiastic when ‘adding an option’ starts looking like another way to redefine the problem so the healthcare system can offer less actual care,” Stewart told PNN.

After building and testing the app, OU researchers plan to have a randomized controlled trial to see how well it works.

“With the team we have in place we’ll be able to bring all the necessary components together to develop, test and deploy a novel, culturally tailored chronic pain intervention that will be scalable,” said Rhudy.

I will definitely be keeping an eye out for the trial results – especially if the app is then pushed on the larger chronic pain community. I’ll be especially interested to see how effective the app is compared to opioid pain medication – although I doubt they will include any data on that.

It’s so disappointing to see money and energy going to projects like this, which are clearly a result of opioid-phobia. Every time a project like this is funded, it means less money and effort going toward interventions that probably have much a higher chance of actually helping people in pain.

How Racial and Ethnic Disparities Affect Pain

By Madora Pennington, PNN Columnist

Much of the race-related research on chronic pain in the United States only compares Black and White Americans, leaving out many other ethnic groups and demographics.  

In an attempt to broaden our understanding of who experiences pain and why, researchers culled through eight years of public surveys conducted by the CDC and the U.S. Census Bureau from 2010 to 2018. These National Health Interview Surveys gathered information from White, Black, Hispanic, Asian, Native American and multiracial Americans, giving us new insight into the role of race in pain prevalence. 

“People often tend to think about pain as a personal issue or personal struggle, but it’s really a broad social and societal issue,” says Anna Zajacova, PhD, a sociology professor at the University of Western Ontario and lead author of Beyond Black vs White, a study recently published in the journal PAIN.       

In addition to race, Zajacova and her colleagues looked at socioeconomic factors such as education, family income, home ownership and whether someone was born in the U.S. or abroad.  They found that racial disparities in pain are far larger than previously recognized, with Native Americans nearly five times more likely to have severe pain than Asian Americans. Hispanics, Whites and Blacks fell between the two extremes.

Severe Pain Prevalence

• 2.4% Asian Americans

• 5.0% Hispanics

• 6.8% Whites

• 7.6% Blacks

• 8.7% Multiracial Adults

• 11.1% Native Americans

Why is there so much disparity between races? Researchers found that Asian Americans collectively had the highest levels of education and family income, giving them a socioeconomic advantage that may explain their lower pain prevalence. Native Americans, on the other hand, tend to be the most socioeconomically disadvantaged ethnic group, which is likely a factor in their high pain prevalence.

“We really need to understand what is causing the high pain among Native American and multiracial adults, and what factors protect Asian Americans from reporting high pain on average. This question will require delving into upstream causes such as discrimination, resulting stress and corollary health impacts, as well as the role of protective factors such as community and individual resilience,” Zajacova told PNN. 

While socioeconomic factors play a role, they're not always a deciding one. Hispanics reported less severe pain than White Americans despite having fewer socioeconomic advantages, indicating that other factors may be involved.

One may be place of birth. Researchers found that immigrants reported significantly less pain than native-born adults. Since about half of Hispanic adults are foreign born, that may help explain their lower incidence of pain -- or at least a reluctance to report it. 

Researchers say we need a better understanding of the racial, ethnic, social and economic issues that contribute to chronic pain if we ever hope to manage it.   

“The biopsychosocial model of pain predicts that people marginalized by social conditions would experience more pain. Our foundational results show more nuanced patterns, in which some minoritized groups show higher pain prevalence than Whites, whereas others show lower prevalence,” Zajacova wrote.

“Given that pain is arguably the most prevalent and costly public health condition in the United States, enhanced knowledge of racial and ethnic disparities in pain is urgently needed to inform policy decisions and focus efforts at population-level prevention and intervention.” 

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies. 

Lobbying for Better Access to Migraine Care

By Mia Maysack, PNN Columnist

Last week the Alliance for Headache Disorders Advocacy held its 15th annual Headache on the Hill, with over 200 patients and advocates from 48 states visiting close to 300 congressional offices to lobby and raise awareness about migraine and headache disorders. Like last year, most of the participants attended virtually online due to the pandemic. 

As a person living with never-ending head pain from a traumatic brain injury for over two decades, it has been an honor to participate in this event for multiple years. During that time, we've continued to make progress, such as more funding for migraine research, expanding options for symptom management, obtaining access to oxygen therapy, and helping to launch the VA’s Headache Centers of Excellence — which are all meaningful strides towards healthcare reform.

However, I have never been prouder to be a part of this year’s Headache on the Hill (HOH), which had two major “Asks” for our congressional representatives:

Ask #1

Support investment in Headache Centers of Excellence for Indigenous Communities, with $5 million per year in additional appropriations. The goal is to have the Health & Human Services Secretary designate 6 new headache centers in mostly rural reservations, with an emphasis on expanding options for telehealth, so that Native Americans and Alaskan Natives living in isolated areas will be able to connect with and consult with medical professionals online.

Ask #2

Have the General Accountability Office (GAO) issue a report on funding priorities for the National Institutes of Health (NIH), specifically as it relates to headache disorders. Although migraine impacts roughly 40 million Americans and is the main cause of disability for women under 50, migraine research still receives some of the least funding from NIH, even though it has a strategic plan to consider the "burden of individual diseases” when making funding decisions.   

There is a pressing need for more migraine research if we are to find new treatments, invest in viable solutions and alleviate the need for more providers who specialize in treating head pain. Headache and migraine disorders need to be prioritized at NIH -- not above or before any other health condition, but alongside them. 

Government accountability is a part of public service. We need to know in what ways are we moving forward and how our money is being spent.   

Navigating the healthcare system can be challenging. I cannot begin to keep track of the countless hours I've devoted to sitting in waiting rooms at clinics, fighting for insurance coverage, begging for referrals, convincing providers that my ailments are real, and attempting many treatments in desperation for relief.

But as horrendous as my experiences have been at times, nothing compares to the malpractice and neglect that is experienced by patients in marginalized communities. 

It has been documented that Native Americans and Alaskan Natives have the highest rates of disabling headache disorders. They are 40% higher than other races, with a particularly high impact on men. Despite this, Indigenous communities on average have only one neurologist for every 125,000 people!   

Health resources that are caring, regardless of cause or condition, are investments in people. We have huge disparities in equitable care. Why is it that communities with the biggest needs have the fewest resources?

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.