note: an incomplete version of this post went out earlier due to Patreon's terrible UI – I regret the error...
As I write this, we do not yet know how bad the outbreak of COVID-19 will be. In the absence of information, that vacuum (deliberately exacerbated by the Trump administration, "Health officials ordered to clear all statements about coronavirus with Vice President Mike Pence") is filled by panic.
But chronically ill / disabled people know all too well that panic alone is not enough. The best estimates from the smartest experts predict efforts to contain the virus will ultimately fail ("WHO raises global risk of coronavirus from 'high' to 'very high' ") – and so the time to prepare for a pandemic is now.
"Pandemic" means the disease has spread across the globe, but it does not tell us anything about how serious that disease is. Early numbers in these sorts of outbreaks usually paint a much bleaker picture about disease severity than we ultimately face. (Why? The people who tend to seek treatment initially are the sickest and initial resources are devoted to them.)
But the early numbers out of China are so concerning that we must act now.
Again, I want to emphasize that these numbers are preliminary – it isn't at all clear if they'll hold in other countries. But the Chinese Center for Disease Control and Prevention is saying the mortality rate is 2.3%.
For comparison, the mortality rate for seasonal influenza, which is estimated to have killed an average of 37,875 people per flu season between 2010 and 2018, is 0.1%.
(Donald Trump, to the surprise of no one, was shocked by the flu's mortality, "AP FACT CHECK: Trump’s misplaced statistics on virus risks".)
A case fatality rate of 2% would be extremely bad.
If COVID-19 carries a mortality rate around 1% to 2% in the United States, we should expect "social distancing measures" ("To fight coronavirus spread, the U.S. may expand ‘social distancing’ measures. But it comes at a cost") and an overwhelmed healthcare system (see, e.g., "Estimates of the Demand for Mechanical Ventilation in the United States During an Influenza Pandemic" modeling the demand for mechanical ventilation in an influenza pandemic. nb. COVID-19 is a respiratory disease)
In order to determine the true severity of COVID-19 in the United States, we need a a widely available and accurate test to determine whether or not someone has COVID-19. But both CDC and FDA are failing to ensure that happens:
Key Missteps at the CDC Have Set Back Its Ability to Detect the Potential Spread of CoronavirusThe CDC designed a flawed test for COVID-19, then took weeks to figure out a fix so state and local labs could use it. New York still doesn’t trust the test’s accuracy.
FDA is dragging its feet as well.
As a matter of political reality, we need to know how serious COVID-19 is in order to demand the legislative action that will allow us to survive in case the mortality rate is even 1% to 2% in a country of ~320 million.
What do I mean? If social distancing measures are implemented, and the healthcare system is overwhelmed with COVID-19 cases, chronically ill Americans should have an emergency stockpile of the medications they rely upon. It isn't just me saying this, CDC's guidance for normal preparedness says "Keep at least a 7 to 10-day supply of prescription medications. Keep your medications in labeled, childproof containers."
Have you ever actually tried to get a payer to cover an extra supply of medication for an emergency? Payers will only do so if forced to by law. And if they are forced to do so by law, it will take time for the computer systems that pharmacies, insurers, Medicare, Medicaid, IHS, VA, PBMs, etc. etc. etc. rely on to be patched. That's one reason we need legislative action very, very soon.
And what about restrictions on controlled substances? Imagine the situation in which COVID-19 has overwhelmed the US healthcare system, social distancing measures are being enforced by government through the use of emergency police powers (here, I mean "police power" as a legal term of art), and chronically ill patients run of out vital medications that also happen to be controlled substances. Unless action is taken very soon, those patients will have no options other than to suffer without their medications, harming their health – potentially causing death.
I think we need provisions in place now for everyone to have access to something like an additional 30 day emergency supply of their medications in case COVID-19 turns out to actually be the threat it now seems it may be.
Legislative action, particularly in this political climate, takes urgency. Without solid data on the severity of COVID-19, we will have a great deal of trouble communicating that urgency to policy makers. And right now, both CDC and FDA are not doing their jobs – and so we are not collecting the data about the actual severity and spread of this outbreak that we need.
To be honest, I'm not surprised. Donald Trump's response? "A tax cut package."
Legislative action takes time. Changes to the vast sprawling complex web of systems that govern provision of, and payment for, medical care takes time.
Chronically ill / disabled folks have to be at the table, and we have to be at the table right now – later, time might not be a thing we have.
FDA and CDC must immediately do whatever is necessary to make accurate and reliable testing widely available. And Congress must work on passing legislation that ensures chronically ill / disabled folks are able to prepare for this pandemic.