5 takeaways:
➀ African Americans and Latinos die disproportionately from rare diseases. Blacks have higher death rates than whites for 12 of the 15 leading causes of death in the United States, and almost are rare diseases, said Linda Goler Blount, president of the Black Women’s Health Imperative, a nonprofit that focuses on health equity in rare diseases. Latinos have higher death rates than whites for diabetes, hypertension, liver cirrhosis and homicide, Blount said. Journalists should take care to convey that the causes of the discrepancy have everything to do with the barriers to accessing timely and accurate diagnosis and proper treatment, and nothing to do with race. Black women also have 42% higher breast cancer mortality rates and higher rates of other diseases. “It’s not because they’re Black, it’s because of the experience of being Black in this society in this time and over history,” Blount said. “Because there is no biological or genetic determinant of race in language that public health officials use and medical professionals use, we talk about health and data and race in a way that really misleads the listener or the viewer. We sometimes inadvertently lead people to believe it’s because they’re Black.”
➁ Discrimination itself is now believed to cause negative health outcomes. University of Michigan researcher coined the term “weathering” in 1992 to explain the poorer health of Black women at a younger age than their white counterparts. The weathering phenomenon is now understood to be an epigenetic expression of stress. Researchers have found that telomeres, the protective coating at the end of a strand of DNA, fray as a result of stress, shortening cell life and causing inflammation and metabolic changes – and these DNA changes are linked to experiences of racial discrimination. Historical abuse and mistreatment of people of color in the health care system endure in failures of research, diagnosis and treatment, Blount said.
➂ Black and brown people are not asked to participate in clinical trials as often as other patients, and this skews research. “Providers don’t ask because they make assumptions about what their patients will and will not do,” Blount said. “Because of these assumptions, many people of color are never offered the opportunity to participate, and those who do want to still face barriers.” Patients may need to request time off from off work, find someone to watch their children or arrange transportation, she explained. “And…the informed consent process is quite burdensome. It is designed to protect the research institution and not the patient,” she said. “So, we like to say clinical trials may not cost anything, but they’re certainly not free.”
➃ Health advocates are organizing for health equity in rare disease treatment. This requires both changing research practices and helping communities of color, which have a well-founded mistrust of the medical profession, understand the benefits of inclusion in research and clinical trials, Blount said. In 2020, BWHI launched The Rare Disease Diversity Coalition, which brings together rare disease experts, diversity advocates and more to identify evidence-based solutions to the rare diseases burden on communities of color. The coalition brings together 30 organizations focused on “shortening that journey from the appearance of symptoms to diagnosis to effective treatment, and to make sure that more researchers of color are included in research and trials and more patients of color,” Blount said.
➄ Be cautious when using the terms “minority” and “diverse.” Minority is a mathematical term that is sometimes outdated and often pejorative, said Blount. “In the U.S., depending on what state you’re in, who’s the minority?” she said. “If you’re in California and you’re white, you are in the minority, but that’s not how we tend to use the term, and the same is true for the term diversity. We tend to refer to people as diverse. There can be diversity within a group, but a person can’t be diverse.” (Other language tips for writing about rare diseases are here.) Blount sees “a sea change happening around language so that we say what we mean and mean what we say.”
Speaker:
Linda Goler Blount, President and CEO, Black Women’s Health Imperative
This program was funded by Fondation Ipsen. NPF is solely responsible for the content.
