An Open Letter to Our Communities About Coronavirus

An Open Letter to Our Communities About Coronavirus Among the Immunocompromised, Chronically Ill and/or Disabled

How We Got Here

First society laughed:

Coronavirus is a public health crisis that is growing more serious by the minute. But it didn’t start that way. Maybe you first heard about it through online jokes and memes comparing it with beer, or perhaps you heard that it was a hoax and were told that you should not be alarmed. As people in the “high-risk” group that coronavirus complications are disproportionately affecting — those with chronic diseases, compromised immune systems, or the elderly — we never thought it was funny. Humor has a place in education (see our video about handwashing) but it must be informed by the community.

Are our lives expendable?

Then society panicked:

People started fighting over toilet paper. Hand sanitizer became available only for $100 through online third-party sellers. Grocery and big-box store shelves emptied. Oh look: Everyone around us just started taking the precautions that many of us must follow on a daily basis because our suppressed immune systems make us vulnerable to common infections. A flu virus could kill us or our loved ones. We are scared about what another illness — one that the global medical community still knows little about — can do to us.

We were panicked from the earliest days of COVID-19 community spread — and we were ignored.

Please don’t ignore us any more.

Are our lives expendable?

What to Do:

Now, we must trust science, infectious disease experts, and public health officials.

We live in a cultural moment in which it is all too easy to disregard science and evidence-based information. We can easily curate our own siloed sources of information through social media outlets. There is mistrust in the media and in public officials. We must look past political divides, trust science, and allow our media to amplify these validated sources. Thank your local health officials and journalists for working around the clock to help provide critical information and ensure our long-term safety and well-being.

It is our responsibility to share reputable information with our peers, colleagues, loved ones, and communities.

Are our lives expendable?

Now (and always), we must listen to the voices of ill and disabled patients:

Those who stand to be the most impacted by a pandemic are often the last to be heard. Those who are  most at risk are often placed at society’s margins. We must come together to highlight and amplify the patient perspective in this global health crisis even if it makes us uncomfortable. We must share our fears and concerns. We must get other people to hear them.

Read some of them here: www.creakyjoints.org/coronavirus.

The undersigned believe that chronic disease patients, seniors, and people with disabilities have an intrinsic value in our society. When addressing public health crises, these groups need to have a seat at the table and their perspectives and voices need to be incorporated in public policy, discourse, and practice.

Because our lives are NOT expendable.