As far as the state is aware, Todd Heywood recovered from COVID-19 months ago.
However, the 50-year-old state employee says he hasn’t recovered and he isn’t sure if he ever will.
In early February, Heywood noticed he had a fever and was experiencing a number of the symptoms that are associated with coronavirus. But this was more than a month before the state reported its first cases of COVID-19 on March 10. At the time, Michigan had no testing capabilities and the virus that has now changed life completely for everyone in the nation seemed like a faraway problem.
Heywood, who was diagnosed with HIV-accelerated emphysema about a year ago, figured his breathing struggles and other symptoms were a flare-up related to that illness. His doctors thought so, too.
Heywood already wore masks in public and worked from home due to his pre-existing health conditions. But when these new symptoms set in, he began to fear for his life.
He was misdiagnosed with pneumocystis pneumonia in late February and placed on an oxygen tank in March.
“I certainly don’t hold any animosity towards the doctor that made that diagnosis. It made sense at the time. But what I learned when I went to a pulmonologist months later was that the X-Ray was a classic COVID-19 pneumonia X-Ray,” Heywood said. “What we know now is that the structural emphysema remains stable; it has not changed. … This is lung damage related to COVID.”
Since March, 164,274 Michiganders have tested positive for COVID-19, and 7,239 people in the state have died from the virus. The coronavirus has infected more than 8.7 million people in the United States and killed 226,211 people.
Heywood is considered a “probable case” by Michigan Department of Health and Human Services (DHHS), something the state has been tracking since April 5. The state reports that 18,070 Michiganders had probable cases of COVID-19 and estimates there were another 346 probable deaths.
According to DHHS and the U.S. Centers for Disease Control and Prevention (CDC), Heywood also is one of the 114,939 people who have recovered from coronavirus. DHHS defines a recovery as a person with a confirmed COVID-19 diagnosis who are alive 30 days post-onset of illness.
Matt Longjohn, a public health physician and health systems researcher from Southwest Michigan, said it’s difficult to compare recovery data between states because many have tracked it differently. At the time that federal and state health officials decided a recovery period, details about the novel virus were still unclear, he said.
“At the public health level, especially at the beginning of this whole pandemic, what we were trying to do is not come up with clinical guidelines when establishing things like recovery periods, but we were trying to come up with ways to figure out are we getting ahead or are we falling behind on transmission,” said Longjohn, who is a former 2018 Democratic congressional candidate.
At the beginning of the pandemic, when public health officials were trying to wrap their heads around the spread of the disease, establishing a recovery period was less about understanding long-term effects of the virus than it was about establishing how many people contracted COVID-19, Longjohn said.
Heywood is concerned about the lasting effects on his health and if his body will recover from the long-lasting damage. He says his breathing hasn’t fully recovered, he is fatigued most of the time and his cognitive function isn’t what it used to be.
People with long-term damage or symptoms, otherwise known as “COVID-19 long-haulers” often experience long-lasting symptoms, such as fatigue, brain fog and physical pain or soreness.
According to a study put out by the CDC in July, 35% of symptomatic adults had not returned to their usual state of health when surveyed between two and three weeks after testing positive for the virus.
There was even an impact on 18 to 24 year olds with no chronic medical conditions. One in five had not returned to their usual state of health after passing the standard recovery time.
Michigan started tracking death certificates from the state’s vital records in April to understand if COVID-19 played a role in a person’s death.
“When we weren’t doing adequate testing to really capture people at the right time, at the early point of diagnosis, and we weren’t quite sure what their clinical course was, this was a way to try to tie our data together to say, ‘Well, if somebody didn’t die, then they must have recovered,’” Longjohn said. “And it was for the purpose of counting active cases, helping us to continue to contact tracing, things that are related to public health functions.”
While an individual may experience symptoms beyond the defined recovery period, the data from these intervals were designed as a public health tool to understand the death rate and the trends in health care capacity, he said.
“It’s like a dial on your dashboard that says that if we have a bunch of people in recovery that didn’t die after 30 days, we can say, ‘OK, well, we’re probably not expecting these number of people to be using X percentage of our health care capacity anytime soon,’” Longjohn said.
Currently, the state’s death rate is at 4.4%. But in the early months of the pandemic, when limited testing was reserved for those who likely needed to be hospitalized because of the virus, the death rate was around 10% — the highest in the nation.
“If someone has pre-existing conditions, now even including COVID exposure, they’re more likely to see symptoms or sequela expressed for longer than 30 days,” Longjohn said. “But those are clinical problems that should be dealt with in the clinic one-on-one, and we aren’t yet at a place where we’re seeing that in policy.”
Heywood said the way the state is tracking recoveries is “misleading” because it doesn’t demonstrate the long term effects from COVID-19 that many people face.
“This 30-day recovered marker really allows people to minimize how life-changing this infection is,” Heywood said. “I just think it’s important for people to understand, when we say that somebody is ‘recovered’ that does not mean the same thing for everybody that was impacted.”
Longjohn said it isn’t so much that the data is misleading, but that it’s being “miscommunicated.”
“The data point can be misunderstood, misused and miscommunicated very easily because of the title of the interval, and it’s easy to connect it to your thinking about someone’s individual clinical outcome when it’s really a public health surveillance tool,” he said. “I think the challenge is that we’ve got epidemiologists and public health people looking for data trends at the state level or the county level or the community level, using terms that when someone hears it on Facebook sounds like it’s about you how long they should expect the person down the street to be sick.”
Sarah Lyon-Callo, the state’s top epidemiologist, said the recovery data is used to better understand how many people have had the virus.
“There’s certainly people who will have symptoms longer, and we continue to learn more about the disease and about how it impacts people differently in terms of their outcomes and what it means for their results,” Lyon-Callo said.
The state has primarily focused on prevention and mitigation the last seven months, especially as Michigan and much of the country is facing another wave during flu season.
In March, Gov. Gretchen Whitmer shuttered businesses and schools and issued a stay-home order that lasted until June. State health officials followed the guidance of Dr. Anthony Fauci, the nation’s leading infectious disease expert, in mandating masks, ensuring social distancing and limiting capacity in public venues.
For months, the state held up as a hotspot for the virus and had some of the highest numbers of COVID-19 cases. Now, Michigan has the 34th highest case rate in the country, although there has been a sharp rise in cases and deaths this month.
The country, as a whole, was largely unprepared to handle a pandemic in the early months, when states fought for personal protective equipment and tests and bargained with the President Trump administration to receive help from the Federal Emergency Management Agency (FEMA).
Whitmer clashed with Trump over support for the hard-hit state, and Trump even said in March he directed Vice President Mike Pence, who heads the White House Coronavirus Task Force, to not answer Whitmer’s calls in March.
Longjohn said that what failed health officials the most in being able to collect cohesive data earlier on was a lack of federal leadership.
“States, in an absence of national leadership, were making their best judgment calls about defining these windows, their public health purposes, without national guidance,” Longjohn said. “And now we have a problem because when you try to compare some data across states, you’re talking about apples and oranges and now it means that some of these data just aren’t useful.”