SPRINGFIELD — Before Vallena Adkinson’s 35-year-old daughter Helen Heath died in March from complications of the autoimmune disease lupus, Adkinson spent years navigating a health care system she said treated her daughter poorly because she was Black.
She said during her daughter’s hospital stays, she was often treated rudely when seeking better treatment for Heath, who had developed bedsores so severe, it became clear she wasn’t being turned properly. Hear Maureen McKinney’s story here
Once, Adkinson said, an overnight nurse was apparently sleeping when Heath was under her care. When Adkinson confronted the nurse about the incident, she said the nurse screamed into the phone and hung up on her. Adkinson later learned the nurse had made it known she had problems with people of color,
“My thing is, why would you even give her a patient of color knowing that she doesn’t care for Black people?” Adkinson said “But I just made sure she stayed away…from Helen.”
Adkinson’s perception that Black patients are more likely to experience inferior care in hospitals and other health-care settings than white people is borne out by years of studies.
But the national awakening to racial inequalities after George Floyd’s death last May — and the protests that followed — gave policymakers an opening to address structural racism. Video footage of now-convicted officer Derek Chauvin showing him kneel on Floyd’s neck for 9 minutes and 29 seconds as Floyd struggled to breathe and eventually died of asphyxiation spread around the globe, catalyzing a flurry of proposed legislation aimed at tackling racial disparities in many areas of society.
Illinois was no exception.
Reforms include required implicit bias training for medical professionals.
The Illinois Legislative Black Caucus last summer and fall drafted a series of reforms centered on creating more equity in criminal justice, education, economic development and health care.
“Health care is a right, not a privilege.” said Gov. J.B. Pritzker when he signed the bill into law last month. “But for too long, too many Illinoisians have been denied that right — whether through health care deserts, inexcusable delays in Medicaid applications through lack of access through high premiums, through doctors untrained to recognize symptoms on Black skin.”
While crafting the legislation, sponsors in the Illinois Legislative Black Caucus and their staff turned to experts in areas including medicine, sociology, African American studies, social work and urban planning.
Dr. Ruby Mendenhall, a professor at the University of Illinois, has spent her career working at the intersections of those areas, and advised lawmakers while they put together their proposal.
She told the lawmakers about a study that showed that many first and second year medical students believed that Black skin was somehow thicker than white skin, and Blacks’ nerve-endings were less susceptible to feeling pain than whites.
Over a two-decade period, Black patients were 22% less likely to receive pain medicine, she said. Meanwhile, Black women are six times as likely to die from pregnancy-related issues — more than 70% of which were preventable.
“When you do have health care, and you go into the doctor’s office or the hospital, what type of treatment you receive, can literally have life and death consequences,” Mendenhall said.
In addition to anti-bias training for medical professionals, the Black Caucus’ massive health care law that creates a statewide anti-racism commission and halts the closure of safety-net hospitals for the duration of the COVID-19 pandemic.
The law also makes state investments to combat rates of infant and maternal morbidity, creates violence prevention and day care trauma programs, offers legal protections for those seeking treatment for opioid addiction and caps tax costs for blood-sugar-testing equipment at 1 percent.
Long-time state Sen. Mattie Hunter (D-Chicago) has been working for decades on ways to stem discrimination against Black patients, but acknowledges much of her action has been piecemeal.
“For so long, African Americans (have) endured all kinds of hardship, especially as it relates to health care in the state of Illinois and actually, throughout the entire country,’’ Hunter said. “It is just so interesting to find that African Americans have been hit hard with the highest rates of diabetes, kidney disease, cardiovascular diseases, asthma, and I can just go on and on and on.”
State Rep. Camille Lilly (D-Chicago), sponsored the bill in the Illinois House. During a May 3 press conference to tout the new law, Lilly said Black and Brown Illinoisans have faced health care disparities “for decades.”
”And it has become undeniably apparent during this mess of a global pandemic — COVID-19 — life expectancy should not be determined by your ZIP code,” Lilly said.
Lt. Gov. Juliana Stratton lauded a provision in the law requiring all licensed daycares in Illinois to train providers on infant and early childhood mental health, trauma and adverse childhood experiences “so that trauma can be identified and families can be connected to resources,” she said.
“Research says that 85% of brain development happens in the first three years of life,” Stratton said. “Data shows that when children experience abuse or neglect, when they are hungry or housing-insecure when their parents are incarcerated and, when they and their families must endure structural racism within the education, food, housing and health care systems, they are in a constant state of trauma.”
Hunter says the legislation, which Republicans have warned could cost as much as $12 billion annually, will save countless lives
“You’re gonna have to understand saving money on reducing the rates of diabetes, cardiovascular diseases, hypertension, you will see… immediate results.” Hunter said. “We are going to have more healthy outcomes, more healthy babies, more healthier individuals.
‘GOP state Sen. Dave Syverson, (R-Rockford), however, says the multi-billion dollar law is unaffordable for the cash-strapped state. Syverson serves as the minority spokesman for the Senate committee that looks at health care, and said that because many provisions in the law will only become reality subject to appropriations, the law’s intent and real-world application will end up being very different..
“The idea we’re having bad health outcomes currently, starting new programs without eliminating old programs or determining which programs are working and not working doesn’t seem to make sense,” Syverson said. “If we’re not getting the results that we want, why are we continuing to fund so many programs and just look at starting new ones.”
But Hunter says the law will continue to be reviewed as it rolls out to ensure its efficacy.
One of those issues will address what Lilly called the “crisis-level shortage” in behavioral health professionals in Illinois, The state is ranked 29th in the nation in the nation for availability of mental health professionals
Meanwhile, Mendenhall of U of I is enthusiastic about parts of the law aimed at training Illinoisans to become community health workerswho can act as liaisons between health care providers and minority people in need of medical treatment. Mendenhall said community health workers who look like the communities they serve will go a long way to building trust in the health-care system.
Community health workers can be any frontline healthcare worker, from a licensed doula to a traveling certified nursing assistant and even positions that don’t exist yet.
“They already have some of the cultural wealth and the resources and in many ways, it’s their gift and passion to do that,’’ Mendenhall said “So I see as the two types of knowledge kind of coming together to create something that really that could really be a collective force for healing in the community.’’
Training medical professionals to recognize and address structural racism will be a years-long effort, but the Black Caucus’ health-care bill aims to start the conversation within the medical community.
Mendenhall gave a visual explanation of how change is possible, but difficult. She said she learned it at a computer science conference she attended.
“They talked about this idea of a squishy ball, and…you can apply pressure to a country and when the pressure is applied, things may change,” Mendenhall says “But once the pressure stops, it goes back to its natural shape.”
Mendenhall said the shape of the imaginary ball needs to be altered “to change the structure of the country.”
“So hopefully, that bill will shed light on, ‘what do you do about it’” Mendenhall said of the Black Caucus’ law. “What’s the big shift that creates that change the structure of the ball that changes the structure of this country?”