An open letter to government and health care leaders across the country:
This is the story of why I’ve completely lost faith in the ability of the government and the health care system to handle the COVID-19 pandemic. In short, you ignored logic, you ignored me and my family, and. you completely ignored the reality of the situation as it unfolded in January and February, leading to a completely failed response by March.
My family’s story begins back on Tuesday, the 25th of February. That was the day my 12-year-old son developed a dry cough. We didn’t think much of it at the time, it was already an early allergy season, but things were about to change quickly. By Wednesday evening, my son was running a 101º fever. It was too late to go to the pediatrician’s office, so we waited until Thursday morning.
We arrived at the pediatrician’s office shortly after they opened at 9am on Thursday. By that point, my son’s cough was descending into his chest. He was still running a 101º fever, and he was complaining of a sore throat. The doctor tested him for strep, then she went through the COVID checklist. No, he hadn’t been to China. No, we didn’t know anyone who had recently been to China who had symptoms. I didn’t understand why the doctor tested him for strep, the sore throat complaint I guess, and I should have pressed her harder on it. She decided he had a respiratory infection, and she was confident it wasn’t COVID because he had no links to China. So she sent us home to wait out his virus.
By mid-day Thursday, I started developing a dry cough myself. Nothing severe, just a tickle at the back of the throat. By Friday morning I was running a 101º fever too, and I could feel the cough creeping into my chest as well. At this point my son and I both had chesty coughs and fevers. Neither of us had body aches or headaches. No runny noses or sinus pressure — this thing was just setting up shop in our chests. It wasn’t strep, and it sure didn’t seem like flu (we’d already had two rounds of that in the house, in November and January). I was starting to worry that this might be COVID.
My son and I suffered through the weekend. My son’s fever broke on Sunday morning. He was still coughing from his chest, and it was becoming a wet, phlegmy cough. But he had missed so much school already this year that we sent him back to school on Monday, the 2nd of March.
By evening that Monday, I was feeling miserable. I was still running a fever and coughing terribly, but I also began to notice over the course of the afternoon that my breathing was becoming more labored. I was now genuinely worried that my son and I had COVID, so I visited the local Righttime urgent care center. I was seen promptly upon my arrival and I let the RNP know my concerns. She read me the standard CDC script (have you been to China, etc.) and told me that clearly I didn’t have COVID because China. She diagnosed me with an upper respiratory infection (again, I never had a runny nose or any sinus pressure) and said I was developing bronchitis. She gave me a course of albuterol via nebuliser while I was in the office and sent me home with prescriptions for prednisone and an albuterol inhaler. I was feeling much better after the nebuliser treatment.
On Tuesday evening, my son went to soccer practice. He lasted about 15 minutes before he couldn’t continue. He was coughing uncontrollably and complaining about pain in his chest, so my wife took him to the local Patient First health care clinic. The doctor at Patient First diagnosed him with pneumonia in his left lung. She sent him home with prescriptions for a Z-pack, augmentin, and an albuterol inhaler, along with guidance to see his pediatrician on Thursday.
For my part, Tuesday started out well, but by late afternoon I was feeling poor again. My fever had finally broken, but the tightness in my chest was coming back. And overnight Tuesday, I felt like I could feel “goo” moving in my chest any time I changed position in bed. I was worried — both because I didn’t feel like I was getting better and because I was supposed to be going on a cruise with my wife on Thursday. I needed to do something.
The morning of Wednesday, March 4, I made an appointment at the local Adventist Healthcare clinic. (I thought I was going to the same place my son had visited the evening before, but I picked the wrong facility on the same block.) While checking in, I specifically wrote on the check-in sheet that I thought I had COVID. When I saw the doctor, she asked why I thought I had COVID. I explained my symptoms — the fever, the cough, the difficulty breathing, and my son’s experience as well — and then she read me the standard CDC script. No, I hadn’t been to China. No, I don’t know anyone who had been to China who was exhibiting symptoms. I only knew of my son, who was exhibiting COVID symptoms and had been diagnosed with pneumonia the night before, but had no connection to China. The doctor did an X-ray of my chest and determined that I did not have pneumonia, but rather bronchoconstriction and possible fibrosis. I received another duoneb treatment in the office, and the doctor sent me home with a prescription for a Z-pack and told me to double-up on my inhaler. This time I challenged the doctor and asked why she didn’t think I had COVID based on my symptoms. Her response was that based on CDC guidance, and specifically my lack of connection to China, that my symptoms did not indicate COVID.
The next day was March 5, the day we were supposed to leave for our cruise. Once again, after the duoneb treatment, my chest felt much better. Trying to be as objective as possible, I still felt like I had COVID, but now three different doctors had told both my son and me that we didn’t. So, being told that I didn’t have COVID, and being fever-free since Tuesday, we decided to take our cruise. Ironically, for all the warnings from the cruise line about enhanced screening measures, they let me on the ship without any questions. They literally just looked at my passport to ensure I didn’t have a Chinese (and possibly Iranian) visa inside. There was literally a family all wearing masks at the check-in station next to us, and they got on board too. So much for enhanced screening.
By Saturday, March 7, I had started feeling dizzy while standing. I wasn’t completely sure at the time if it was just a case of not getting my sea legs on the cruise or something more, but things seemed to be spinning more on this cruise than on previous ones. That, and by the Saturday evening I was developing soreness under my left armpit. That seemed odd. By Sunday morning, I had soreness under both armpits, and the room was definitely spinning. This was not normal, but I wasn’t about to let anyone know if I could avoid it. I wasn’t going to be the guy who got another cruise ship quarantined. I soldiered on, and finally by Wednesday, March 11, I started to feel normal again. The soreness and the dizziness were gone, and so was the nagging cough. Wednesday evening was the first time in almost two weeks where I could actually say I felt good.
Things were good for a couple of days when my wife started with a low-grade fever. She had been having sinus issues for a couple of days, but we chalked that up to seasonal allergies as neither my son nor I had sinus issues with our infections. But on Saturday, March 14, the fever started. She ran a fever off-and-on until the following Friday, but the cough was getting worse the whole time. Finally, on Friday, March 20th, she began a constant 101º fever. Now with fever and cough, she was trending much like my son and I had just a couple of weeks before. She made her visit to the local Righttime care center on Friday evening. She let them know that she thought she might have COVID, and she got the usual battery of questions — still obsessed with China. But they did test her for strep (negative), flu (negative), and RSV (negative). She asked for a COVID test, but RIghttime did not have test kits available, nor did they feel comfortable/capable referring her to a facility that could test her. They did give her a prescription for an albuterol inhaler and sent her home with directions to self-quarantine for 14 days. Her discharge papers say, “Patient was instructed to self isolate for 14 days for possible concerns of community exposure to Covid.” This was the first time anyone had acknowledged to a member of my family that we might have been exposed to Covid via means that didn’t involve direct contact with China. And that "community" that exposed my wife to the disease? That would be me, my son, and whomever infected my son.
Not satisfied with Righttime’s response, my wife contacted MedStar Montgomery Friday evening. We called the ER at Montgomery General Hospital to ask about testing. They told us they were only testing in-patients, and that we should contact one of MedStar’s PromptCare centers to request a test. It was late enough Friday by this point that the PromptCare centers were closed.
So first thing Saturday morning, my wife contacted MedStar PromptCare. She was told that she would have to do a virtual visit with a doctor first, and if the doctor thought a COVID test was necessary, the doctor would refer her for the test. My wife had her virtual visit shortly thereafter. And after reviewing my wife’s symptoms, the doctor classified her as a “yellow” case. This diagnosis, coupled with community risk factors (my wife is a special educator for infants and toddlers, some with underlying health issues), convinced the online doctor to refer my wife to our local PromptCare center for a test. She was given directions to arrive 20 minutes prior to her appointment and to wait in her car until they had cleared a room for her. She did that, and when she finally saw the doctor at the PromptCare center she was informed by the doctor that she would not get tested for COVID. When my wife asked the doctor why not, the doctor told her that she wasn’t a severe enough case to test for COVID. My wife challenged that statement, and reminded the doctor that she had been referred to the center not an hour earlier by a MedStar doctor who said she should be tested. The doctor responded that the facility didn’t have enough test kits, and that they were only testing medical first-responders and individuals that were severely ill. The doctor told my wife that her symptoms and testing history clearly indicated COVID, but the doctor was not going to test my wife because she wasn’t sick enough and not a first-responder. She was sent home 20 minutes after being brought to an exam room. No test. No additional treatment.
This is absurd. As of 7:30pm on Sunday, March 22, the state of Maryland is reporting 244 cases of COVID. But I’m aware of three cases in my own home that will never get counted in that list, and I’m sure I’m not alone. The government has moved too slow, been overly concerned with an individual’s direct contact with China, and has provided too few resources to accurately track the disease. Instead of simply diagnosing the disease via the symptoms presented and mathematical modeling, doctors, at the direction of the CDC, have been obsessing over links to China while COVID spread unchecked. It’s likely this behavior exacerbated the spread of the disease by convincing infected patients (like my son and I) that we didn’t have the disease, and that we were free to go about our lives. We sent our son back to middle school because the doctor said he didn’t have COVID. My wife and I took a cruise because two doctors told me I didn’t have COVID. And we exposed my 75-year-old parents and 68-year-old mother-in-law because our doctors told us we didn’t have COVID.
But it gets worse. Our lack of preparedness means there aren’t enough test kits to test sick people who might have the disease; we can only test the ones that are already very ill or on the front lines. We have no clue how many moderate, mild, or even asymptomatic cases of COVID are out in the wild. It makes me think that we are underestimating the spread of the disease by at least an order of magnitude, and maybe more. In other words, the response to this pandemic has been a complete failure. I don’t trust that the government or the medical community has the faintest clue how widespread this disease is, and by extension I don’t trust the response. The President, the CDC, the Governor, and the medical community — you have all failed me. You have all failed my family. You have all failed my community. How many people died because of this incompetent response?
That last question is important for many reasons, chief among them is to motivate a much better response to the next pandemic. So what lessons can we learn from recent failure? The first lesson is that there are no international borders when it comes to transmission of disease. Simply look at the routes commercial airlines fly from major hubs around the world. From Dulles International Airport a traveler can reach most of North America and Europe, Brazil, Israel, Japan, and China via direct flights. The same is generally true for SFO, though you can add South Korea, Australia, and New Zealand to the destinations served by direct flights. Flights run every day of the week. A typical 777/787 carries between 250 and 350 passengers. For a destination like China, with major hubs in Beijing, Shanghai, and Hong Kong, that means there are typically more than 10,000 travelers per day between China and the US. That's a lot of potential carriers of infection over the course of a month, and it only takes a couple of generations (defined as number of days / the median incubation period) before the infected have no connection to one of those travelers. In the case of COVID specifically, this means the questions about travel to China, or contact with travelers to China, were meaningless by the end of January.
The next lesson is that data matters. We have models for how diseases spread in a community, and these models are good predictors of how a disease will impact us, but we need a starting point. That starting point requires aggressive testing of impacted communities so that we can understand characteristics such as communicability and incubation period. Only then can we seed a model to understand the spread. And once we have models, we need to run them and test them. Geometric models tend to blow up very quickly -- consider the classic riddle about whether we should choose $1,000 a day or $1 on day 1, $2 on day 2, etc., for a month. So when we see results from a model that blows up to tens of thousands of infected over the course of several weeks, we need to take it seriously. We also need to validate and refine the model, and that again requires aggressive testing of the population. Sometimes that will mean testing specifically for a disease, but at the start of an epidemic or pandemic that may be impossible. Thus it will also require an unbiased observation of symptoms and testing to exclude other possible causes for those symptoms.
Next, preparing for a pandemic means actually preparing for a pandemic. It may be difficult to create test kits without knowing what to test for, but we should be prepared in so many other ways. There is no excuse for being short of masks and other protective clothing; these products can be stockpiled for years. There's no excuse for not having a protocol for dealing with potentially infected patients before they walk into a facility. If I walk into a clinic complaining of COVID-like symptoms, that needs to immediately trigger a response to protect the safety of practitioners, support staff and other patients in the facility. It means having a plan in place for limiting the movement of individuals while ensuring critical infrastructure is not impacted. A haphazard closure of schools, restaurants, and stores is not a plan.
Finally, we need some method for understanding the totality of this pandemic. We've lost the chance to aggressively test for the infection during its active stages, and we can't just walk away from this once the worst is behind us. At some point we will have the opportunity to test individuals for antibodies against the infection. We need to take that opportunity seriously and, again, test aggressively. Only by doing so can we glean an accurate understanding for how the pandemic unfolded, and we'll need that understanding to help fight the next pandemic.
For those that made it through this diatribe, thank you for your time and attention. I wish you well, and I hope we will all be better prepared the next time.
Sincerely,
Greg
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