The Washington Post headline was chilling: “CDC gets list of forbidden words: Fetus, transgender, diversity.”
Could there be censorship at the Centers for Disease Control and Prevention (CDC)? How could the federal agency charged with improving the overall health of the public operate effectively while banning scientifically precise (yet politically volatile) words like “fetus”, "evidence-based" and “transgender?”
According to the article, policy analysts at the CDC were told not to use seven specific words in the official documents they were preparing for the agency’s budget.
The seven words were:
- Evidence-based, and
The health care community also responded quickly, concerned about the immediate and long term effects. Within days, the American Medical Association, the American Association for the Advancement of Science, the Center for Plain Language, the Center for Infectious Disease Research and Policy, the HIV Medicine Association, the Pediatric Infectious Disease Society, the Infectious Diseases Society of America, the Journal of the American Medical Association (JAMA), and the New England Journal of Medicine (NEJM) all condemned the idea to varying degrees in published statements.
The main problem with the removal of certain words from the CDC's report—and this applies to the banning of any word, really—is that censorship limits healthcare policy from being comprehensive, medically precise, and unbiased.
Imprecise language can lead to guesswork
The language used in scientific disciplines, including medical science, is precise.
While it may be common in everyday speech to refer to a woman’s fetus as her baby, that’s not essentially correct. “Fetus” doesn’t mean the same thing as “baby,” each word refers to a specific stage of mammalian life. Each distinct stage requires particular care for that life to thrive and the care needed by each stage is not interchangeable.
One cannot simply find-and-replace these two words and maintain the same meaning—not in a medical textbook, not in a treatment plan, and not in healthcare policy.
Language identifies population groups and their particular health needs
Erasing “transgender” from health policy raised alarm the LGBTQ community and among the healthcare professionals who serve it.
The LGBTQ community is disproportionately affected by a number of health issues, among them HIV, substance abuse, stigma and violence, discriminatory treatment in the healthcare system, and a lack of health insurance.
For many in the LGBTQ community, discrimination and stigma follow them into the healthcare setting. Half of LGBTQ people surveyed reported having providers deny them care, use harsh language, and/or blame the patient for causing their illness. Up to 39% of transgender people have reported experiencing harassment or discrimination when seeking routine healthcare.
More at the root of the problem, medical training rarely encompasses LGBTQ health issues. At more than half of medical schools and public health programs in the US, the LGBTQ-relevant curriculim is limited to HIV/AIDS. This lack of knowledge among healthcare providers and policymakers leads to gaps in care for transgender people. For example, a transgender man who has a cervix is unlikely to receive screenings for cervical cancer, a standard preventative measure in women’s health.
By 2013, the NHIS found that the uninsured rate didn’t vary significantly between heterosexuals, gays or lesbians, or bisexuals. Transgender coverage rates were not captured in this survey. However, another study found that nearly half of transgender people reported that they either postponed or went without medical treatment because they couldn’t afford the cost. Additionally, many health insurance plans exclude coverage for transgender-specific treatments and procedures, among them gender transition and hormone therapy.
In recent years, legislation and court rulings influenced by health policy have begun to address some of these disparities by calling them out specifically. The Affordable Care Act expands access to insurance coverage and prohibits discrimination based on pre-existing conditions, sexual orientation, or gender identity. Additionally, recent Supreme Court rulings that established federal recognition of same-sex marriage effectively expanded access to dependent health coverage and family and medical leave benefits to same-sex married couples and their families.
If “transgender” disappears from official health policy, it will be easier for their health care needs to be marginalized or even dismissed. Some in the LGBTQ community fear this.
Subjective language undermines the science-based or evidence-based nature of health policy
In the place of “science-based” or “evidence-based”, it was suggested that analysts say “CDC bases its recommendations on science in consideration with community standards and wishes.”
“Community standards” may seem fairly colloquial, but that phrase actually has particular meaning in law.
The Supreme Court has ruled that obscene material is not protected as free speech under the First Amendment, which raised the question of how one can reasonably define a subjective term like obscenity. Basic guidelines for defining obscenity were given in Miller v. California. The first guideline is whether “the average person,” applying contemporary “community standards” would find the item in question, as a whole, appeals to prurient interests and is, therefore, obscene.
Imagine applying this same idea to a public health emergency.
Should the contemporary community standards of a community of, say, anti-vaxxers determine a public health department’s response to a measles outbreak? What if a government official suggests quarantining HIV patients, despite the fact that HIV can’t be transmitted through casual contact? Should a specific community be able to remove some or all public funding from a clinic because it doesn’t support some of the science-based and legal services the clinic offers?
By introducing subjective "community standards" into the mix, the very notion that healthcare policy as science-based or evidence-based is undermined.
Limiting language has a chilling effect on research and scholarship
The very possibility that a federal health agency might eliminate specific words from its use has raised alarms among health care advocates, researchers, and professionals.
There’s a feeling that by eliminating certain words, the associated healthcare issues lose urgency and importance. It makes them easy to ignore and leave untreated.
Beyond this, health care advocates, researchers, and professionals fear the chilling effect limiting healthcare policy language will have on research, talks, and papers—especially by those receiving federal funding. If a researcher, for example, feels that their funding is jeopardized by investigating a particular health issue because it’s associated with one of the seven words, will that researcher avoid that issue entirely and leave it unaddressed?
Improvement and innovation in medical care starts with research; scientists uncover causes and identify treatments in the lab. From there, engineers take that insight to design and develop technologies that support better health. Public health researchers uncover and confirm people’s health needs and effective ways to address them.
If the research process is limited from the beginning, by excluding selected words or ideas, the results surely will be limited in the end. Who knows what opportunities for better healthcare, even new cures, will be cut off from the start?
What happens now?
Healthcare professionals have raised concerns about the potential negative effects of eliminating words from the conversation. Will they continue to speak out and demand transparency from the CDC and other governmental health agencies? Will their advocacy effectively protect all populations, even the most vulnerable among us?
Whether the CDC budget analysis documents go to Congress devoid of these seven words remains to be seen. For her part, CDC director Dr. Brenda Fitzgerald denied the idea that her agency banned any words from its documents but did not refute the report.