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nursing homes

We don’t know enough about what’s happening at nursing homes

We’ve talked before about two of the main coronavirus hotspot types in Texas, prisons and meat processing plants. Now we’re going to talk about that third type, nursing homes.

As the death toll grows at Texas nursing homes, so has the number of requests for information kept by state health officials that would reveal which long-term care facilities have suffered coronavirus outbreaks during the worst pandemic in generations.

But the Texas Health and Human Services Commission, which regulates nursing homes and assisted living facilities, is attempting to keep its records secret, despite calls for more transparency from open-government advocates, some Texas lawmakers and family members worried about vulnerable residents.

“The public is being left in the dark, and we’re losing control of our ability to oversee the operations of our government,” said Joe Larsen, a lawyer with the Freedom of Information Foundation of Texas, which published an open letter last month urging the health commission to release its records on nursing home infections.

In a May 4 letter to the Texas Attorney General’s Office, Carey Smith, a lawyer representing the health commission, said the agency has received more than two dozen public records requests for nursing home data about coronavirus infections, but that federal and state laws prohibit the release of the information because it might identify infected residents and violate their privacy.

However, Texas legislators who wrote one of the laws cited by Smith said it doesn’t prohibit officials from releasing statistical information about COVID-19 in nursing homes.

“The statute was not intended to create a blanket protection for all health-related information,” said former Sen. Kirk Watson, D-Austin, who authored the bill in the Texas Senate last year.

The sponsor of the bill in the Texas House, Rep. Giovanni Capriglione, R-Southlake, said releasing statistical data from nursing homes could benefit both consumers and government authorities. And, like Watson, he said the bill they passed doesn’t prevent state officials from releasing that information.

“So long as you can’t get personal identifying information I don’t see why the current rules and statutes that we have don’t already allow that information to be released,” Capriglione said.

[…]

After facing criticism from families and advocates of nursing home residents, Texas began releasing statewide statistics that show the total number of coronavirus deaths at nursing homes, which provide round-the-clock care, and assisted living facilities, which are less intensive.

As of [May 1], 478 COVID-19 deaths — nearly half of the 1,042 reported in Texas — were at nursing homes or assisted living centers, records show.

But state health officials haven’t disclosed infection rates for each location, which has stymied families trying to protect their relatives. The lack of information also leaves hospice workers and other contract caregivers in the dark.

That story was from early May. Since then, we have gotten more numbers from the state.

More than 3,000 Texas nursing home residents have tested positive for the new coronavirus, as well as nearly 400 assisted living facility residents, according to data released Friday by the Texas Department of State Health Services.

Among the reported 311 nursing homes with confirmed cases, 3,011 residents have tested positive and 490 have died. Another 494 residents have recovered, according to the data. At 112 assisted living facilities in Texas with at least one confirmed coronavirus case, 382 residents have tested positive for the virus, and 95 have died.

Statewide, 1,272 people have died, but it was unclear late Friday if all of the long-term care facility patients’ deaths were included in that larger figure.

The state had previously released only the number of nursing homes with confirmed cases and fatalities, not the number of people who have tested positive.

The state is still not releasing the names of nursing homes with COVID-19 cases. Many families remain in the dark about whether their loved ones in nursing homes are at risk of exposure.

There are a lot of reasons why we need more and better reporting of this data. For one, just so that the people who have family and friends that live or work at these places can know what’s going on with them. For two, to better identify the places that are not up to standard on health and safety. For three, so we can learn from the places that are doing well as well as the places that are doing poorly, so the overall level of safety and care can be improved. This is not hard to understand, and at least it looks like there’s bipartisan agreement that the existing laws need to be upgraded for the future. Put that on the ever-lengthening to do list for the 2021 Lege.

How to become a coronavirus hotspot

It can happen to you, wherever you are.

Lamar County courthouse

Barely a week ago, rural Lamar County in Texas could make a pretty good argument for reopening on Friday.

Less than a dozen of the 50,000 residents of the area, which is right on the border with Oklahoma, had tested positive for the coronavirus – and none had died.

The mayor of Paris, Texas – a pit stop for drivers passing through to snap a selfie with the city’s miniaturized Eiffel Tower – had drive-thru virus testing in the works, just to give locals peace of mind. Some wore masks but many saw little reason to bother.

Then an outbreak at a nursing home turned up over the weekend, with at least 47 people at Paris Healthcare Center infected.

Now 65 people county-wide are infected and stores are second-guessing reopening as Lamar County becomes a cautionary tale of the fragility of Republican Gov Greg Abbott’s plan to get Texas back in business faster than many states.

[…]

Up until last weekend, Lamar County looked like a contender to begin to reopen under the loosest restrictions.

There had been just eight cases of coronavirus as of April 23, and six of those people had recovered.

“And then: ‘Boom,'” Paris Mayor Steve Clifford said, with the first positive case at the nursing home appeared the very next day.

“It hits us, like, right between the eyes, and all of a sudden we have this really huge, huge outbreak.”

According to The Paris News, there area fears of cross-contamination at another facility where an employee of Paris HealthCare also works.

“We are on the state’s radar now, and inspectors were at a second nursing home today,” Paris Mayor Pro Tem Paula Portugal told the newspaper.

“Austin knows our situation, and I believe they will help us with testing if we have a positive in a second nursing home.”

Now Clifford, a radiologist, worries about a second wave.

He worries about getting more testing kits, which has been a chronic problem that may have masked the true number of cases in his city from the start.

Recently, a courier drove 11 hours through the night to pick up testing kits.

Clifford had purchased 1,500 antibody tests – a big gesture for a city of 25,000 – and did a trial run of drive-thru testing April 23, in preparation for opening up for three days this week.

The nursing home outbreak scuttled those plans. One resident has died, but Clifford said if Texas doesn’t open back up soon, “every business in my city is going to go bankrupt and no one will have a job, and then there will be poverty.”

This is an Associated Press story. I saw it in the print section of the Saturday Houston Chronicle, but the only place I found it via Google News search was The Guardian, so go figure. I actually don’t intend for this to be a scare story. What happened in Lamar County could happen anywhere, but in most places it hasn’t happened, and God willing it won’t. We hate to admit such things because we all like to believe in our own virtue and fortitude, but sometimes it’s just bad luck, and this time Lamar County drew the short straw. The point of the risk mitigations we have taken against coronavirus – the shutdowns, the face masks, the social distancing, the hand washing, etc etc etc – have been about making the odds of such bad luck longer.

The parallels to what I do in real life in cybersecurity are striking. You can’t prevent all bad things from happening, but there are a lot of things you can do to make them less likely to happen, and to make them less damaging and easier to contain when they do happen. There are always tradeoffs – in IT security, they’re between stronger protections and ease of use. It’s one thing to weigh the risks when it’s your own personal safety or fortune on the line, and it’s another when the risks involve other people as well. This is why your corporate proxy server blocks certain URLs, and doesn’t let you send or receive executable files in your email.

I’m not asking you to believe that if you eat in a restaurant tomorrow you’re going to get sick and die. I am asking you to believe that your actions and decisions affect others as well as yourself, and the risks you are willing to take for yourself may impose an unbearable cost on someone else. That’s always been true – there’s a reason we have speed limits and laws about where you can legally shoot firearms, for example – but it’s a whole lot more visible to us now. I don’t know why this is so hard for some people to handle.

Treating COVID-19 patients at nursing homes

This is a huge can of worms.

When Larry Edrozo got a phone call from his mother’s nursing home in Texas City telling him she was being treated for the novel coronavirus with an unproven pharmaceutical drug, he had two questions: why was she getting the drug if she had not been showing symptoms, and who gave consent?

Helen Edrozo, 87, is one of 56 residents at the Resort at Texas City who tested positive for the coronavirus, and one of 39 residents being medicated with hydroxychloroquine, a drug typically used to treat malaria and lupus that has shown some evidence of possibly tamping down symptoms of the virus.

The use of hydroxychloroquine to treat coronavirus patients has drawn controversy globally as the medical community and public debate the ethics of testing a medication before significant research is available — and in the case of elderly patients such as those at The Resort at Texas City, on a population that is statistically more vulnerable to the virus. While President Donald Trump has touted the drug’s benefits, a large controlled study of hydroxychloroquine has not yet been completed, and some doctors warn the drug combination used for the experimental treatment could have severe, potentially deadly side effects.

Larry Edrozo was initially told by an administrator at the nursing home that Helen would not eligible for hydroxychloroquine treatment because she was not showing symptoms. But on Monday, a nurse at the facility phoned him to tell him that his mother’s carbon monoxide levels in her blood had elevated slightly and that she had already begun a hydroxychloroquine dose.

Edrozo was stunned. His mother has dementia, meaning that, as her power of attorney, he is supposed to sign off on any medical treatment she receives at the nursing home.

“I (told the nurse), ‘OK, well, since you’ve already started (treatment), I guess I would write in my notes that the question was raised about consent and what happened to that?’” Edrozo said. “I have not received a call back.”

Dr. Robin Armstrong, the medical director at The Resort, who prescribed the medication shortly after Amneal Pharmaceuticals donated 1 million tablets to the Texas Department of State Health Services pharmacy, said the decision was between him and his patients. He said he did not notify families before the drugs were administered because it was not necessary and time consuming.

“If I had to call all the families for every medicine that I started on a patient, I wouldn’t be treating any patients at all; I would just be talking to families all the time,” Armstrong said

But ethicists say informed consent is one of the most important factors in any treatment, and several people with family members at the Resort at Texas City being treated with hydroxychloroquine say that they were not asked to give consent, despite having power of attorney over their sick relatives.

Still, faced with the desperation of potentially losing his mother to the coronavirus, Edrozo felt he had no other choice than accept this course of treatment.

“When the people are blasting the doctors and the governor’s office about human guinea pigs, I’m sort of there with them,” Edrozo said. “But then I want to ask them, ‘What if it was your mother, or your spouse or your child?’”

As the kids say, there’s a lot to unpack here. At the most basic level, there’s nothing but anecdotal evidence that hydroxychloroquine has any effect on coronavirus. There are no studies worthy of the name showing that it would help. Maybe it will, maybe it won’t, we just don’t know. And that’s without taking into account the inability of these patients on whom the tratment is being tested to give informed consent for their participation. Or the fact that hydroxychloroquine is an actual drug used by people suffering from lupus and malaria, and Donald Trump’s obsession with it as an unproven treatment for COVID-19 means potential shortages for those patients. Did I mention that the doctor leading this effort is a Republican activist who got a supply of the drugs through political connections, and who therefore has a vested interest in making Trump and his hydroxychloroquine predictions look good? All this, and even if it does help some of these patients it won’t tell us anything about the effectiveness of hydroxychloroquine as a treatment because this isn’t a controlled study. Keep in mind, everyone who has recovered from COVID-19 has done so on their own. We’ll have no way of knowing whether the people at The Resort who recover would have done so anyway – that’s why doing controlled studies matter, so you can make valid comparisons. I very much get Larry Edrozo’s dilemma, but he and everyone else involved in this deserved to have full knowledge of the risks and benefits so they could make their own decision.

We still have no idea how many people have been infected

There’s just a real lack of testing being done.

Six times in three weeks, Marci Rosenberg and her ailing husband and teenage children tried to get tested for the new coronavirus — only to be turned away each time, either for not meeting narrow testing criteria or because there simply were not enough tests available.

All the while, the Bellaire family of four grew sicker as their fevers spiked and their coughs worsened. They said they fell one by one into an exhaustion unlike any they had felt before.

By March 18, Rosenberg was desperate and pleaded with her doctor for a test. Dr. Lisa Ehrlich, an internal medicine physician, told Rosenberg to pull into her office driveway. But Ehrlich warned Rosenberg, “I can only test one of you.” She swabbed her throat through an open car window. The result came back the next day: positive.

The rest of her family was presumed to be positive but untested – and thus excluded from any official tally of the disease.

As the number of confirmed cases of the potentially deadly virus continues to explode across the Houston region – tripling from 1,000 to more than 3,000 in just the past week – there is mounting evidence that the true scope of the disease here could be far worse than the numbers indicate.

A Houston Chronicle analysis of testing data collected through Wednesday shows that Texas has the second-worst rate of testing per capita in the nation, with only 332 tests conducted for every 100,000 people. Only Kansas ranks lower, at 327 per 100,000 people.

In cities across Texas — from Houston to Dallas, San Antonio to Nacogdoches — testing continues to be fraught with missteps, delays and shortages, resulting in what many predict will ultimately be a significant undercount. Not fully knowing who has or had the disease both skews public health data and also hampers treatment and prevention strategies, potentially leading to a higher death count, health care experts say.

[…]

As the pandemic’s march quickened, Texas was slow to ramp up testing.

The first confirmed case in Texas, outside those under federal quarantine from a cruise ship, was March 4, striking a Houston area man in his 70s who lived in Fort Bend county and had recently traveled abroad. By month’s end, the Houston area had more than 1,000 confirmed cases. A week later, the number had pushed past 3,000.

Yet it was not until March 30 that the rate of testing per 100,000 people in Texas topped 100. As of Wednesday, the state was testing 327 per 100,000, according to a Chronicle analysis of data from The COVID Tracking Project, which collects information nationwide on testing primarily from state health departments, and supplements with reliable news reports and live press conferences.

Twenty-six states in the U.S. are testing at least double the number of patients per capita as Texas, in some cases six times more. New York, for instance, is testing 1,877 per 100,000 people while neighboring Louisiana is testing 1,622 per 100,000. Even smaller states, such as New Mexico, are testing triple the rate of Texas.

Texas officials defended the state’s response.

“We’ve consistently seen about 10 percent of tests coming back positive, which indicates there is enough testing for public health surveillance,” said Chris Van Deusen, a spokesman for the Department of State Health Services, in an email, “If we saw 40 or 50 percent or more of test coming back positive, we’d be concerned that there could be a large number of cases out there going unreported, but that has not been the case.”

It is unclear if that is a reliable measure. Nearly 41 percent of New York tests were positive, the second-highest rate in the country. In Texas, about 9.4 percent of tests were positive — roughly the same as Washington state, where one of the largest outbreaks of coronavirus has occurred.

Not the first time we’ve talked about this, and it won’t be the last. This also means that the official number of deaths attributed to coronavirus is likely too low. This has been the case globally, especially in the hardest-hit places, where the difference between the normal daily mortality rate and the observed mortality rate during the crisis is a lot bigger than the official count of COVID-19 deaths. The good news is that as yet our hospitals have not been overwhelmed, but we can’t say with confidence that that will continue to be the case.

The number of people hospitalized with COVID-19 in the Houston area is continuing a steady climb, not close to crisis levels but unnerving enough that experts still aren’t sure when the area’s grand experiment in social distancing will start showing up in daily counts.

After a week in which COVID-19 hospitalization numbers more than doubled in Harris County, epidemiologists and infectious disease specialists said it likely will be another week to 10 days before they know if the stay-at-home orders and closures are reducing the rate at which the coronavirus is spreading and keeping health care facilities from being overwhelmed.

“Even though we’ve been social distancing for three weeks, it’s too early to know when we’ll be on the downward slope,” said Catherine Troisi, a professor of epidemiology at UTHealth School of Public Health. “The numbers we’re seeing now reflect people who were exposed to the virus up to four weeks ago.”

Peter Hotez, dean of the National School of Tropical Medicine at Baylor College of Medicine and Texas Children’s Hospital, said the social distancing has paid off in terms of keeping hospital volumes under control so far but added that the pay-off in terms of ending the pandemic is unclear. He said that “we need to continue stay-at-home orders until the end of the month, then reassess whether to extend them longer.”

Hotez and others said that aggressive social distancing is more important now than ever, given modelers are projecting that the number of COVID-19 cases in the Houston area should peak in the next few weeks. They said people venturing out during the peak period will put themselves at high risk of contracting the virus.

[…]

The study, released on March 24, originally said the virus’ spread in the Houston area would peak April 7 and burn out by mid-May if stay-at-home orders are continued until May 12. It was not clear Tuesday when the study projects the virus will burn out now.

Eric Boerwinkle, the lead researcher, could not be reached for comment Tuesday and UTHealth officials had no update on the study. Boerwinkle, who did not make the original modeling publicly available, has briefed top local government officials on the work.

Another modeling study, conducted by the University of Washington’s Institute for Health Metrics and Evaluation, now projects that the Texas peak use of hospital resources for COVID-19 will be April 19, some two weeks earlier than it previously projected. The study, reportedly relied on by the Trump administration, foresees no bed shortage in the state, including in intensive care.

“That’s why you shouldn’t place too much weight on any one model,” said Dr. James McDeavitt, Baylor’s dean of clinical affairs. “They depend on assumptions plugged in and can show everything from Houston being able to handle the surge to a New York City-like situation.”

McDeavitt noted the wild cards that go into modeling — the number of people admitted to a hospital, the percentage that need intensive care, how long it takes to get patients off ventilators, how long they need to recover in a regular bed once they move out of intensive care. Those are the assumptions that drive models, he noted.

McDeavitt said he doesn’t think the number of cases will come down in the Houston area until the end of the month.

That story was from earlier in the week, so all of the numbers are a bit out of date by now. But the bottom line remains that we don’t know where we are on the curve because we don’t really know how many people are or have been sick. Models all rely on data, and we’re also not good with the data.

The information Texans are working with is too damn thin.

Where to start? Not enough tests have been completed, or taken, to really know who has or doesn’t have the disease, where the Texas hotspots are, or whether people who have died of respiratory problems had COVID-19. The relatively small number of test results also means we don’t know which people had the disease and recovered (and how many people have recovered) and whether the projections being made with that skimpy data are accurate enough to guide our public health decisions.

It’s not enough to say that the testing is getting better, that we know more than we knew just a few days ago. What we still don’t know overshadows what we do know.

We’re like pilots flying in clouds without instruments. We know a little bit, but not enough to make really solid decisions or to figure out what’s next. We’re learning as we go. As of Thursday, Texas was reporting 10,230 cases and 199 deaths, 1,439 hospitalized COVID-19 patients and 106,134 tests conducted.

Given the level of testing right now, it’s hard to know how many cases Texas really has. Because the best way to get tested for the new coronavirus is to show symptoms that a medical professional finds troublesome, it’s probably safe to say we’re not testing many people who are carrying the virus but don’t have symptoms.

It’s easier — because it’s more obvious — to map the institutional cases. When someone in a nursing home or a state supported living center or a prison tests positive, testing everyone in that location is simple and smart. It’s simple to figure out that everyone in a given building or campus might have been exposed.

Even that data isn’t always available. The state of Texas initially wasn’t sharing details about the data it has collected from nursing homes where COVID-19 cases have been found. But a few days after The Texas Tribune’s Edgar Walters and Carla Astudillo wrote about it, the state revealed 13% of nursing homes have at least one confirmed case.

We’re doing a lot of flying blind. If we want to make good decisions about things like when and how to restart the economy, we need a much better understanding of where we are, and where that means we’re likely to be going.