What Five Years Took

 This "blog" has been dormant for 5 years because lol, who writes blogs anymore. But with the 5th anniversary of the Covid-19 outbreak landing in the US, I've been reflecting on the things I've lost over 5 years.

Five years ago, I turned my apartment upside down looking for one cloth face mask I'd bought in Taiwan years earlier as a souvenir. I wanted a facial covering. Though I also worried how it'd look to everyone else in Indiana who'd never seen a cloth mask before.

Five years later, I get cute N95s twice a year from a company that has had at least 6 "going out of business" sales. I've fallen for the lie 3 times. My go-to is the Scotch plaid, although the neon colors look nice, too.

Five years ago, I lived in a one-bedroom apartment in Indianapolis. My home "office" was just a wall. And I worked wedged between my desk and dining table. 

Over the last five years, I've moved 3 times and had to spend countless hours figuring out how to assemble office furniture myself. But have also been saved countless times by friends who pop up at just the right time. Being single and living by myself in Indy was never easy. The pandemic isolations made it especially hard. But as much as I was alone (so very alone), I was also seen and I was known by my friends.

 

Five years later, I have moved back to Boston. A city I left in 2011. It's been a weird time but a good time getting re-acquainted with Boston and its people. Mostly, I just go on old people rants about how much the neighborhood has changed and how cheap eggs were back in my day.

Five years ago, I was in the midst of data collection for my first study on the health experiences of gender diverse (trans and non-binary) adults. We had to pivot from in-person interviews to phone interviews in March. In that study, we highlighted the need for primary care access for gender diverse patients.

Over the last five years, I have written more papers and grants in this area (heh, never as much as I'd like. grants are hard!). Together with my colleagues, we've been trying to build a research agenda toward testing interventions to improve how clinicians treat patients. At the same time, with better data, we've also been exploring the healthcare patterns of subgroups of gender diverse adults. 

 

Five years later, the future of all this research is uncertain. There's the global freeze on NIH funding for research. Beyond that, research on LGBTQ health is being specifically targeted. Gender identity and sexual orientation data has been removed from public data sets. There are near daily updates on banned words, funding cuts, staff layoffs that disrupt our ability to work.

Revenge of the Nerds

 I've always been friends with the conscientious, smart kids. In my senior year in high school, my friends and I took out our planners so we could coordinate a skip day that didn't conflict with a test in any of our classes. Today's run up to the Stand Up for Science rally feels a lot like that again. Calendars have been cleared. Signal groups created. And the government employees have taken time off so as not to violate the Hatch Act. I don't know what the turnout will be. And I certainly don't know what will happen beyond today. But the nerds are so angry. And want to feel like we are doing something to stop the avalanche. I lose my words whenever I get to this point, when I want to insert a sentence about what the indiscriminate cuts have meant. They've been so wide ranging and random. It's hurt me, but you as well-- whether that's through fewer spots for grad students, lapses in food safety, or monitoring the weather we all experience. In the midst of all the impact big and small, to pick something specific, I am going today because I care deeply about the health and healthcare experiences of veterans. 

 

(pictured: I made a dumb joke on the back of my sign. it's so very dumb. but the attacks on trans people are even dumber)

Everyone's a Cynic

Nearly a decade ago, in late 2010, I was applying to PhD programs and wrote these words for my personal statement.

Within weeks of working my first job out of Bowdoin College and foray into the world of academic research, I learned that my suspicions of the world were true. Poring through whistleblower affidavits, I saw how Big Pharma was as aggressive as I’d imagined. The Food & Drug Administration was funded by the same drug manufacturers it was commissioned to monitor. The game was rigged. Yet cynicism was not the transformative lesson of my early career. It was how the researchers I worked with dealt with their knowledge of an imperfect system. Even as they kept a critical eye on them, they cooperated with pharmaceutical companies and government agencies to produce research that evaluated the impact of flawed policies. Cynicism could not deter them from changing the world. And I want to change the world through health services research.

The essay itself wasn't that great. It may be the reason I didn’t get into some schools (that one school, in Boston). But I’ve been thinking a lot about cynicism and the rigged game lately. More so than usual. Mostly though, I have been so very angry, disappointed, and anxious. These emotions are not new to me (however suave I may seem to you). They are par for the course in public health, in healthcare, and in health policy. We study bad outcomes and how to prevent them. We yell into voids and shake our fists government inaction (see also, Affordable Care Act; see also, gun violence). We even shoulder some of the blame. If only we were better communicators, maybe they would've listened. 

And so it is both familiar yet heartbreaking to feel this blend again, on what feels like the grandest scale. Our health system was already broken, but the situation keeps being exacerbated by poor and selfish management in and outside of the government. We need to stay home for the near future. We need to stay home on Easter Sunday. People are dying. There isn't enough help to go around. You don’t need the exhaustive list. We are all living with the consequences. We are failing our healthcare workers. And we are failing our communities. 

Yet cynicism was not the transformative lesson of my early career. It’s the belief that we can change the broken world. I have so many friends and colleagues in this fight. I look to those who rail back against the incompetence and demand better. Who speak plain truths to the public even when they are harassed for doing so. I look to those who are building models and creating the evidence base for how we should move forward. I look to the healthcare workers who have prepared their wills, and who volunteer to go into the hospital knowing full well how unprepared they are. I look to you. You who are still reading and playing along by staying home. By helping your neighbors. By sharing laughter and good information. And we do it regardless of who is in office, or how smoothly our systems work. We do it because we can change the world (see also: history of hand washing). 

The Four Questions

One place, with links to four posts.

What Do I Do If I Get Sick?

Where Are You Getting Your Information?

Is It Time to Start Seeing Other People?

How Long Must This Go On?

How Long Must This Go On?

It's not you. It's the virus. You're great. You're doing the best that you can. Your efforts are helping (if you're staying the fuck home). But this virus is rude and we got started on this way too late, and that's why things won't get better in two weeks.

Here's what I can tell you about our best guesses for the future, big picture.

It's going to get bad. (It already is bad in parts of the country) That's why we have to stay home for the near future. It might not feel like it where you are (and that's great!). You might not know anyone who is infected (again, super great things we are thankful for!). But on the healthcare side, hotspots are starting to run low on things. And places that aren't hotspots today will also soon be overwhelmed, too. There are a lot of things that our hospitals don't have enough of, or will soon run out of, like "PPE" (personal protective equipment") for their staff. We need more ventilators. And we need more hospital beds (not the physical beds, but the capacity for hospitals to handle more people). A big bill that just passed on Wednesday will help ramp up the production of supplies, but things won't be fixed immediately. And the bill can't solve everything. 

[Action item: Call your elected representatives. Get them to pass relief bills that help more than the big businesses-- get them to help you, help vulnerable populations, help the healthcare workers on the front lines, and all the small businesses and workers affected. Hold them accountable.]

The pandemic may take 12-18 months to fight. The best guess right now is that this pandemic will be a 12-18 months problem. But this is a new disease. We are just starting our fight. So there are so many moving pieces and there's a chance if we do this well, it won't take this long. It's hard to say. We do know that, historically, pandemics don't last forever. They wreak havoc for a couple of seasons then taper off. So that's something to hold onto!? 

Surely we can't stay inside for 12-18 months. As the days pass, you may hear increasing rumbling, among experts, cable news talking heads, and the many voices inside your head, about the wisdom of school closures and staying at home. They will debate when we can abandon this staying at home business. There are many debatable points! The government does not have a good track record on handling this. And as we are all experiencing, there are some terrible effects of staying at home. Staying at home hurts a lot of people. And this is definitely not sustainable in the longterm. Policymakers recognize that. But we need to stay home now to buy our hospitals time. And to buy policymakers and public health leaders time. They need more data and evidence, from the US and the experience of other countries, to make decisions about when we can change out of our sweatpants. We are only about a week into this. It's only to take one to two months until we can get a good picture. We're going to be looking a lot at China, South Korea, and Italy to see how we emerge from our homes and what a new normal will be. 

[Action item: Pick up the phone and check on someone. Bake brownies and leave me the corner pieces. Pat yourselves on the back for reading this far and getting past hump day. It's OK to question authority and grumble, as long as you do both while staying at home.]

Where Are You Getting Your Information?

I am not an infectious disease expert. I am not an epidemiologist. I just went to public health schools with those very smart people. (Private public health schools. What an expensive oxymoron.) This means that I’m not an expert in Covid-19. But I’m pretty good at understanding and finding information about what’s going on. Think of me as the English major of public health. 

Here’s what I’ve been reading to keep informed. I try to do this only a few times a day so I don't go down too many rabbit holes. 

I start the day with a map with daily case counts:

https://coronavirus.1point3acres.com/en

Hopkins also has a map, and the CDC as well. But I like this one for the links to news stories (links sometime faulty), and the insight on the change in numbers from the day before. For me, this makes it easy for me to easily check on Massachusetts, Indiana, and California. Also, the CDC map is only updated M-F That’s not helpful for those of us who like to freak out on weekends as well. The different maps have minor discrepancies in numbers, but I expect those differences to diminish as testing and reporting improve. 

I turn to Twitter to get the latest developments in science, what clinicians are seeing in the field, policy reactions and proposals from policymakers and thought leaders. Your mileage will vary depending on who you follow (Russian bots = bad), but given that I already had a foot in this health policy-healthcare-public health Twitter world, I feel . Here are a few key people: 

@ASlavitt offers breaking policy news, analysis, thoughts on the actions your local leaders should take and why, geared toward health policy/general audience

@AarroneCarroll provides health news and takes for a general audience 

@DrPoorman shares personal accounts, resources and lessons from Seattle, geared somewhat toward clinicians, but in a non-technical way 

I also read good old fashioned newspapers (online) for broad perspectives and analysis. Plus, the New York Times always has in depth reporting of how rich people live (no paywall for Covid-19 content).

Sure, the Times reporting can be problematic. It’s important to call out their shortcomings. But at least they’re thorough. And right now, they have resources few other papers in this country have.

https://www.statnews.com/tag/coronavirus/ has good, no-frills science reporting. 

About once a day, I also check local sources to find out the latest on what’s open and what officials on the ground are doing (your IndyStar and Baltimore Sun and boston.com. Note: SF Chronicle paywall is also lifted.)

These sources tailored for me, my biases and my needs. Feel free to share yours in the comments. You'll note that I didn't include reports, medical journals or the CDC here. Not because they're not good, vetted sources. In fact, I look for articles and tweets to cite them, and read them myself to make sure they make sense to me. It's just that, given the rapidly developing nature of the pandemic, I look to newspapers, tweeters and other aggregators to sort things out for me first. Don't worry, I'd never pass along anything from The Daily Mail. 

What Do I Do If I Get Sick?

Thanks to a rapidly aging body, seasonal allergies, and the usual hormone fluctuations (usual for a subset of the population), I feel like I'm coming down with something and/or dying about once every other week. In this heightened, near-lockdown times, what should you do when you feel like you're getting sick? And when should you be tested for Covid-19?

As with anything else I write-- I am not a medical doctor. I am just offering general guidelines. For specific treatment decisions about your own health, talk to your doctor (if you don't have one, times like these are why they're helpful. Here's an old blog post about searching for doctors).

First off, a couple of handy charts to tease out some common symptoms. Everyone is different, but in general, these are the symptoms that help distinguish one from the other.





There are actually several good sources out there that answer this question. The CDC is one. What I write below is basically a wordier version of what they say. Because I'm not as good as editing.

Now, if you feel like you don't have Covid-19 and your health issue is something that can be managed with rest, fluids, and over the counter meds, and if you feel 0-4 on a scale of 0 to terrible, then you should do just that. Rest. Fluids. Over the counter meds to manage symptoms as needed. The end. Also, stay the fuck home.

If you think you have Covid-19 or if you feel terrible (5 or above on the scale) for other reasons, it's time to call up your doctor. Do NOT go to the emergency room. Do NOT show up to urgent care clinics. Doing either will add burden to an overwhelmed system and put you at more of a risk of contracting Covid-19. Most doctor's offices have shifted to phone calls or video visits in recent days. There are lots of "patient portals" and things you may be asked to sign up for to facilitate this process. Some might include screening questions (for Covid-19) to help you decide if and when you should call for help. You can find all those things by calling up your doctor or going directly to their clinic website if they have one. If you're already enrolled in a portal, you can schedule a visit without talking to anyone. Here's an example of one, from a health system in Michigan.

If your symptoms match with those of Covid-19 but they are not severe, you will likely not be tested. Although testing is becoming more available, many areas of the country are still behind. Testing requires a lot of resources beyond the tests, like time, personnel, and protective equipment. Unfortunately, an overwhelmed system does not have enough of any of those to spare. It's unfair. But it's American in 2020. So even if you have Covid-19, you may not be tested. Stay home. Isolate yourself from everyone, including those you live with, until you get better (better = until you have x number of symptom free days). If your conditions change according to your assessment, contact your doctor immediately. It's important for people with mild cases of Covid-19 to not just stay home but also isolate from everyone, including those in your household, because, I don't know if you know this, but Covid-19 is a novel disease. It's highly contagious. Not infecting other people means lowering the number of cases that may stress the health system.

(What if you don't have a doctor? That gets a little harder. If you have health insurance, I'd find a primary care practice that can take you. Or call an urgent care clinic that you have access to. Whatever you do, do not show up to the emergency room unless you're actively dying. Always call ahead.)