Governmental agencies must not stray from the course from using scientific evidence to further decrease the spread of the disease. Of utmost importance is to identify vulnerable members of society; testing those most at risk and immediately linking them to care. To borrow from SAGE, a sister AIDS service organization: “We refuse to be invisible.”
D.A.P. celebrates diversity; rather than ignore it.
-Carl Baker, Director of Legal & Legislative Affairs, Desert AIDS Project
Desert AIDS Project has signed-on to the letter below in solidarity against the unacceptable erasure of the “banned” words, “vulnerable,” “entitlement,” “diversity,” “transgender,” “fetus,” “evidence-based” and “science-based”.
The Honorable Secretary of State Rex W. Tillerson
U.S. Department of State
2201 C Street, N.W.
Washington, D.C. 20520
The Honorable Eric Hargan
Acting Secretary of the Department of Health & Human Services
Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201
Dear Secretary Tillerson and Acting Secretary Hargan:
On December 15th, it was reported that the Centers for Disease Control and Prevention (CDC) had “banned” seven words, “vulnerable,” “entitlement,” “diversity,” “transgender,” “fetus,” “evidence-based” and “science-based,” for use in the FY 2019 CDC budget justification. Later news reports state that other Department of Health and Human Services (HHS) agencies have also received guidance to refrain from using these words. The same report notes that the State Department has already changed language, changing “sex education” to “sexual risk avoidance.” It is noted that staff at HHS agencies have stated that they relied on a document from the Office of Management and Budget (OMB) detailing guidance for the FY 2019 budget although an HHS Department spokesman later said the guidance came from HHS, not OMB.
Following the controversy, CDC Director Brenda Fitzgerald has stated that “there are no banned words at CDC.” HHS also said that they had not banned words and that they strongly encourage the use of evidence data.
The undersigned organizations are writing to inform you that, in our view, erasure of these words is unacceptable. Doing so has the potential to negatively impact the health and well-being of people in the United States and throughout the world, including people living with and vulnerable to HIV, viral hepatitis and other STDs.
It is now well-known that we have the potential to end the HIV epidemic by helping people living with HIV know their status, linking them to care and providing anti-retroviral medications and support to help them reach an undetectable viral load. Once that undetectable level is reached and sustained for at least six months, a person becomes virally suppressed and is thus unable to transmit HIV to others. If enough people become undetectable, we can end the epidemic both in the United States and eventually, worldwide. This is further supported by the CDC’s recent adoption of this model as a key step forward in helping eradicate HIV.
However, to even begin to end the epidemic we must be able to reach people who are most vulnerable to this disease, and those least able to access medications (frequently the same populations). We cannot do so if we cannot find them, appropriately engage them, or effectively provide them the means to achieve an undetectable viral level. The precise language that HHS acknowledges has been discussed, is the language that allows the scientific and activist community to reach people. This is true not only for HIV but also viral hepatitis and STDs, diseases which are currently soaring in the United States. We must be able to discuss how to best address these epidemics without censorship.
We are also concerned that attempting to make substitutions for the terms “science-based” evidence-based” is potentially dangerous. In fact, the failure to accurately discuss HIV at the beginning of the epidemic, which included a reluctance to even use the term, AIDS, at the time resulted in inaction and the loss of tens of thousands of lives. We must insist on the use of science and evidence as the strongest standard for taking action. It is a false dichotomy to try to pit community sentiments in opposition to science, particularly during outbreaks of deadly disease. We agree that community concerns must be addressed but most importantly, communities must be apprised of the science and helped to understand the importance of a scientific and evidence-based response. To do otherwise is to create danger and risk to the very communities the government seeks to protect.
The transgender community as well as many communities that may be considered vulnerable or under the banner of diversity are at elevated risk for HIV, viral hepatitis and STDs, not to mention AIDS diagnosis and AIDS-related death. All agencies in the government including HHS and State must be able to respond appropriately to the needs of transgender people and other vulnerable groups with fairness and respect. As human beings, they are entitled to dignity and affirming care. The health of all marginalized and minority communities must be prioritized by this Administration and the U.S. government.