OPINION:

For decades, U.S. policymakers have professed alarm about racial health disparities. But far from working to eliminate these inequities, many officials have been inadvertently perpetuating them. 

Few examples of racism in our health care system are more notorious than the so-called Tuskegee Study, in which hundreds of African American men were intentionally left untreated for syphilis, a debilitating venereal disease. Even after penicillin was discovered to cure syphilis in 1947, scientists continued to let the men suffer in order to study the progression of their disease.

Tragically, nearly a century after the Tuskegee Study commenced, America’s health care system has yet to overcome its temptation to put other considerations ahead of what should be its primary focus: reducing all patients’ risk for mortality, disability and hospitalization.

Take the case of BiDil, an innovative treatment shown to reduce the risk of death for African Americans with severe heart failure. Relative to a placebo, the drug produced a 43% decrease in heart failure mortality among a group of self-identified African Americans. This data led to the Food and Drug Administration’s approval of BiDil in 2005, and the drug became part of a new standard of care for Black patients with severe heart failure. 

The FDA decision to approve BiDil should have been heralded as a welcome development for the 750,000 African Americans with heart disease who’d have potentially benefited from the medicine. But nearly two years after its approval, BiDil was being taken by only 2% of them. The reason? A campaign waged against the drug by a white-dominated medical establishment, paradoxically expressing concern about racism.

The studies leading to BiDil’s FDA approval did not deliberately focus on African Americans. Rather, scientists discovered that the medicine worked particularly well for Black patients, but not as well for most other ethnic groups — presumably due to an as-yet-unknown genetic marker.

That displeased officials at the Centers for Medicare & Medicaid Services (CMS), the goliath of federal health care policy.

One way CMS exerts control is by insisting that its “performance measures” — essentially definitive statements on how conditions should be treated — have to view all patients through a homogenous lens without distinguishing between race, ethnic backgrounds or other factors.

Because BiDil was approved by the FDA to treat severe heart failure in one racial group, it violated this paradigm of standardization. When the time came for CMS to revamp its performance measures for heart failure in 2006, it refused to acknowledge that drugs like BiDil could have enormous benefits for African Americans.

CMS also undermined confidence in BiDil’s clinical value by suggesting to Medicare insurers that a combination of less expensive generic drugs could provide the same therapeutic benefit — even though no studies supported that assertion.

Several health equity advocacy organizations — including the Association of Black Cardiologists and the National Medical Association — raised concerns that the CMS decision could lead to suboptimal health care for African Americans with heart failure. The president of the New England Council of the NAACP said the CMS policy “arouses suspicions of institutional racism.”

Despite outcry from these groups, CMS officials refused to budge, saying they weren’t going to write performance measures for “sub-populations.” CMS’ performance measures were “norming to the majority,” the officials said. Though hundreds of thousands of Black patients could have benefited from BiDil, they never had a chance against the clout of CMS.

As the BiDil case illustrates, decisions made at CMS and other health bureaucracies can cement inequities and undermine the health of marginalized patients. Today, Black patients continue to suffer because of a health care system designed to reduce costs and promote standardization.

Consider CMS’ recent refusal to fully cover aducanumab, the first FDA-approved treatment for Alzheimer’s disease in almost two decades. Black Americans suffer from Alzheimer’s at twice the rate that white Americans do. Quashing innovative treatments for the disease only perpetuate existing inequities.

Though rhetoric on health equity has improved since the Tuskegee Study, gaping health disparities persist — and will continue to do so until officials accept that patients should be more important than payment models, not the other way around.