It was 1999 when the Federal government first acknowledged our nation had a problem with race and health care. That year, Congress tasked the Institute of Medicine to study the matter, and the resulting report was not good. Minorities were in poor health and receiving inferior care, the report said. They were less likely to receive bypass surgery, kidney transplants and dialysis. If they had diabetes, they were more likely to undergo amputations, meaning their disease had been poorly controlled. And there was a lot more where that came from.
The IOM report was a call to action. In subsequent years, lawmakers crafted policies and established goals for improvement. Federal and state governments and numerous foundations set aside billions to fund projects. Health services researchers expanded their efforts to study the problem.
Twelve years later, we have something to show for the effort. Steep declines in the prevalence of cigarette smoking among African Americans have narrowed the gap in lung cancer death rates between them and whites, for example. Inner city kids have better food choices at school. The 3-decade rise in obesity rates, steepest among minorities, has leveled off.
Nevertheless, racial disparities persist across the widest possible range of health services and disease states in our country. The overall death rate from cancer is 24% higher for African-Americans than white people. The racial gap in colorectal cancer mortality has widened since the 1980s. African Americans with diabetes experienced declines in recommended foot, eye, and blood glucose testing between 2002-2007.
Why is this problem so hard to solve?
The reason is that the problem is exceedingly complex. Hundreds of factors contribute to racial disparities in health care. Progress on just a few of them is therefore unlikely to move the needle much (which isn’t to say we shouldn’t try!). The key contributing factors are these:
Identifying Target Populations-Studies of racial disparities in health care rely fundamentally on tools that classify people by race. These tools are notoriously imprecise. Most of them classify all people whose family immigrated from a country that was once considered part of the Spanish empire as “Hispanic,” for example. This means people of Panamanian, Mexican and Venezuelan descent are grouped together (to name but 3 countries).
The resulting “Hispanic population” in studies of health disparities is actually a polyglot of culturally-driven lifestyle choices, tendencies to seek care from physicians, and dozens more behaviors that impact health. This heterogeneity severely undermines the value of information obtained from the studies.
The Genetics Don’t Work: The genes responsible for phenotypic traits that forensic pathologists and anthropologists use to study race aren’t the same ones that govern how sodium-potassium ATP pumps work (and how they impact hypertension risk, for example). They have nothing to do with the genes that govern the body’s tendencies to store fat and establish a basal metabolic rate (and how they impact obesity risk). In fact race is largely a red herring in the search for genetic links to cardiovascular disease, cancer and other conditions that kill US minorities disproportionately .
Teasing-Out Environmental Factors-There are so many! A list of environmental causes of racial disparities in stroke mortality for example, might begin with culturally-driven preferences for certain foods or body types, cigarette smoking, exercise and so on. It might include personal income, educational levels, local availability of fast food restaurants, preventive services and safe places to exercise, and access to health insurance. And it probably also needs to include many causes we don’t yet appreciate. Just this week for example, scientists showed that African Americans suffering strokes tend to call friends first–not 911–a behavior that delays onset of lifesaving treatment. We don’t know what we don’t know about the universe of environmental factors that impact health. That is a serious problem.
Attribution for Poor Outcomes: Scientists have long struggled to determine whether observed disparities are caused by poor care or simply the result of caring for sicker people. The best available severity adjustment tools are no better than fairly good at helping scientists assess burden of illness in a population. To the extent these tools are imprecise, scientists can’t solve the ‘apples to apples’ problem in population-based health research.
Exploring hypotheses about poor care is equally problematic. Racial disparities could be traced to providers themselves, or to a lack of resources at their disposal. Any correlations involving providers could be caused by poor cultural sensitivity on their part (a bad thing), or their desire to develop care plans that reflect the preferences of their patients (presumably a good thing).
The Hundred Years’ War
Twelve years into our war on racial disparities in health care, we can celebrate several narrow, yet significant victories. In addition, we now better understand the factors that drive racial disparities, and this will create a foundation for additional success going forward.
Architects of the Affordable Care Act hope their law will turn out to be our nation’s greatest step forward in solving the problem of racial disparities in health care. But the law is under political siege and its very constitutionality has been questioned in the courts. As well, many deficit reduction plans threaten funding for the law.
In the best of cases, the ACA will be fully implemented in 2019, by which time our nation will be 20-years into our war on racial disparities in health care. The guess here is that we will be struggling with the problem for the better part of this century.