We need full data to assess the impact of COVID-19
The collection of data on patientin take forms, though it might seem complex, is relatively straightforward. Including new demographics on such a form requires pressing a few buttons in order to add a few more checkmark boxes.
Comprehensive data collection during a pandemic, furthermore, is imperative. A pandemic is not an equalizer; our susceptibility to sickness is partly determined by social forces, so there are many distinct experiences of a single virus.
If data collection does not take into account the origins of vulnerability beyond age and geography, the complete narrative of a pandemic is lost. We know LGBTQ+ people, who live disproportionately short, unhealthy lives, are at a heightened risk for contracting COVID-19 and suffering under social distancing regulations. However, without sufficient data, knowledge about how this manifests will, tragically, remain conjectural.
The Ford government’s decision this week, therefore, to omit data about sexual orientation or gender identity from new COVID patientintake forms, comes at a devastating cost to the lives of queer and trans people — particular those of colour. Judith Butler wrote that a queer life is one of “unlivable passion and ungrievable loss,” gesturing partly to the overwhelming quiet about LGBTQ+ suffering.
Who are the queer and trans people who have gotten COVID? Are they alive? The province doesn’t care to know, even as they raise a Pride flag over the Ontario legislature.
While helping to prepare a lecture on LGBTQ+ health for medical residents, I sorted through archives of images of young people dying of AIDS. The record of government silence is stunning; it took five years of a pandemic for president Ronald Reagan to utter the word “AIDS.”
Now, as I looked for information on how the present outbreak was affecting queer and trans people, information beyond what was likely occurring was scant. Anecdotal evidence is critical in any exposition of suffering, but medicine is a science and also requires numbers, numbers the Ford government has decided to withhold from the public. Doctors, trainees and, ultimately, government officials cannot be held accountable to provide solutions to a crisis that has not been proven to exist.
The government’s decision to include in their new intake forms data on race, income, languages spoken and number of individuals in a given household is a step toward health equity and a profound benefit for queer people who are Black, recent immigrants or experiencing poverty.
Without more information, however, care for queer patients and structural solutions to queer and trans illness will remain decidedly unscientific, a matter of guesswork, assumption and hypothesis.
All the while, LGBTQ+ people, especially Black trans women, will continue to die while governments such as Ford’s rely on the rhetoric of acceptance and equality.
“We’re all in this together,” promises Premier Ford.
The premier tweets painstakingly recorded data about the economic costs of COVID nearly every day. It’s a problem he can work to fix, the kind that is documented, acknowledged, even ultimately cured.