Feb. 2, 2022 — Dejuan Patterson was returning home from work one night when he was robbed at gunpoint and shot in the head. Seventeen years old, he was left to die.
Although doctors saved his life, the Baltimore native, who’s now 33, questions the treatment he received from the hospital.
He had surgery and was discharged, he says, with no idea what to do next.
“I did not receive any rehabilitation plans, doctor referrals, specialist services referrals,” Patterson says. “Considering that I had a brain injury, I am just now, years later, getting the quality of care that I was supposed to have.”
Since then, he has figured out for himself that he should have received referrals to a neurologist, been given a treatment plan, and been tested for cognitive and emotional function.
In 2020 Valerie Vison’s husband Jordan, who was Black—Vinson is white—died of an asthma attack when he was just 30 years old.
“He’d had asthma since he was born so he’s always had an inhaler on him. However, Jordan was fit. He was healthy, active, and seemed to be in a stable place of management with his asthma. In the 12 years that we were together he had 3 serious asthma attacks, the third one was fatal.”
According to Vison the aftercare plan Jordan received when he left the hospital was flawed.
“When he took his emergency inhaler it made the asthma attack worse,” she says. “When he went into the ER he told them that, he stated that to the doctors. It’s in the records. And we left the hospital with that same inhaler.”
“The only thing that he got extra was steroids and they gave us a nebulizer machine with a prescription for albuterol which, he was already on.”
Vison believes the color of Jordan’s skin played a role in how he was treated by the health care system.
“I would say there was no health care professional who ever treated Jordan’s asthma as if it were life-threatening,” she says. “He was provided the traditional route for medicine, which is your preventative inhaler and your emergency inhaler. It was routine, and there was never any sense of urgency or real risk to life.”
Shortly after Jordan died in July, the Asthma and Allergy Foundation of America (AAFA) issued a report that found Black, Hispanic and American Indian/Alaska Natives shoulder the highest burden of asthma in the country.
The report found found Black Americans are nearly 1.5 times more likely to have asthma compared to white Americans and are 5 times more likely to visit the emergency room because of asthma and 3 times more likely to die than whites. Black women have the highest death rate from asthma of any group.
That report says researchers have documented differences in the therapeutic response to albuterol along racial and ethnic lines and some studies show the medication doesn’t work as well in Black and Puerto Rican patients with moderate to severe asthma. One study found they had the lowest responsiveness to the medicine.
New Report Focuses on Equity
The National Health Council is working to change this type of narrative.
Its newly released report, “Access, Affordability and Quality: A Patient-Focused Blueprint for Real Health Equity,” identifies systemic biases and structural disparities in the nation’s health care system and proposed key reforms it hopes will help tear down barriers to quality health care for millions of Americans.
Spurred by the COVID-19 pandemic, the report details the impact of systemic racism in society and what it calls “the harmful disparities affecting people with chronic conditions and disabilities.”
“We were and remain compelled to take action,” the report says.
The health equity initiative, signed by 58 CEOs of national patient groups, identified four priority areas that National Health Council CEO Randall Rutta believes will help eliminate bias and expand access in the health care system.
Those areas are: access to care, health insurance coverage, social determinants of health, and medical innovation.
Rutta believes as a public policy agenda is created, equity will be at the center of it all. He’s hopeful that with about 75 national organizations directly involved in developing long- and short-term priorities and making sure patients are involved in all health care decisions, centuries-old health inequities against people of color can be addressed and the diversity gap closed.
“From our perspective, health is so key and so core, we’re coming out of the COVID pandemic hopefully in a way that absolutely gives us clear examples of how we need to do things differently to reach marginalized populations and speak to and engage them in a way they will feel that they’re seen, they’re heard, and their interests are our interests in helping them achieve their health,” he says. “We cannot continue as a society or as a health care sector with these structural barriers in place.”
Patients are Prime
It’s vital, Rutta says, that patients are seen as not just “numbers on a page or statistics in a report” and that their experiences help bring “meaningful change that supports better, more equitable health for all Americans.”
LaVarne Burton, president and CEO of the American Kidney Fund and the National Health Council board chair, says the patient perspective is the key to addressing health equity.
“For too long, discussions have been made about health care without real input from patients, let alone patients who are marginalized and for marginalized communities,” she says.
An example, Burton says, is kidney disease. It impacts people of all backgrounds and demographics.
“However, people of color disproportionately progress to kidney failure at a much higher rate than others, and this is due to the lack of health insurance, the lack of health care providers, and other inequities in our health care system,” she says. “We need to reimagine our health care system so that it is responsive to patients and drives equity.”
Patterson agrees. His experience with what he believes is an inequitable health care system led him to get an education and become an advocate for others in disenfranchised communities.
“I have seen patients being mistreated due to their ZIP code, race, and class,” he says. “I’ve seen decisions being made for patients and families without them, without their presence or input, and I strongly advocate for patients to make informed decisions.”
His advice to patients who fear they may be marginalized: “You matter, your voice is important, it should be included. Be courageous, ask questions, know that you have the right to challenge and ask questions about your health when dealing with the health care system. You deserve to be treated respectfully. You deserve to speak up for yourself and be heard. Despite the power dynamic, you are the patient, and ultimately health practitioners work for you.”
Attention in Congress
U.S. Rep. Robin Kelly, D-IL, is a leader in health equity efforts on Capitol Hill. She chairs the Congressional Black Caucus’s Health Braintrust, is the vice chair of the Energy and Commerce Committee, and serves on its Health Subcommittee.
She, too, wants more focus on improving disparities in health care.
“We all want to keep ourselves and our families healthy, but too often, families experience barriers to care, lack of access to care, or unaffordable care,” she says. “We need to work towards promoting health equity in our communities, increasing diversity within the ranks of health care providers, and expanding innovation at the intersection of technology, telehealth, and telemedicine.”
Passionate about the lack of diversity in clinical trials, Kelly has sponsored legislation to address those issues.
“Decades of institutional racism have hindered health care access and worsened these inequities,” she said. “For centuries, the health of Black and brown Americans has been cast aside as an afterthought. Even when data has shown us pervasive disparities in health care access and in disease and treatment rates, our health care system has not prioritized those issues.”
Gary Puckrein, PhD, president and CEO of the National Minority Quality Forum and a member of the National Health Council board, says creating a health system that works for marginalized populations benefits everyone.
“I am convinced that the patient advocacy community can be the catalyst for change. They’re on the front line, working with patients every day, advocating for them, and now they’re using their unique voices on the issue of inequities in our health care system, and I think they can bring a dramatic change to our health care system.”