By the time you find out you’ve been in contact with someone infected with the coronavirus, it’s too late to protect yourself.
As the virus spreads through New Mexico, even those in the most remote areas recognize their vulnerability. How can you shield yourself from exposure? How likely is it that you’ve crossed paths with someone who might infect you? As the number of confirmed cases increases, the hope that state officials can track all of them diminishes with each day.
Even before Gov. Michelle Lujan Grisham’s stay-at-home order went into effect, some residents expressed frustration at the lack of information about who has been infected. When, on March 10, a reporter for Searchlight New Mexico returned home from a large journalism conference in New Orleans, for example, he was notified that someone in attendance had just tested positive for coronavirus. Since more than 1,000 people were at the conference, he had no idea who that person was. Less than a week later, Nusenda Credit Union notified account holders by email that its Taos Branch had temporarily closed for deep cleaning. A customer had just tested positive for the virus. No other information was given.
This strict adherence to privacy raises questions. Why aren’t people informed about the identity of those who have tested positive? Isn’t that information necessary in order to protect one’s own health?
To address these concerns, Searchlight sought out a medical ethicist. Mark Rothstein is founding director of the Institute for Bioethics, Health Policy and Law at the University of Louisville in Kentucky, and is the author of 19 books and hundreds of articles on privacy and public health.
This interview has been edited and condensed for clarity.
Q: This virus has frightened a lot of people, and many of them see a conflict between public welfare and the personal privacy protections offered by HIPAA — the 1996 law that prevents hospitals, doctors and insurance companies from sharing health data. Is there a conflict?
A: No. In addition to the usual flexibility that’s built into the privacy rule, there’s a waiver for national or public health emergencies. That waiver, issued by the Office for Civil Rights, a department of Health and Human Services that administers the HIPAA privacy rule, eases many restrictions.
Q: The usual rules of HIPAA don’t apply right now? Can you give me an example?
A: If someone saw a new physician today, the requirement to give and follow [the HIPAA privacy notice] would be waived, as are the patient’s rights to request privacy restrictions. … This cuts down on the bureaucracy that can slow down treatment or present an extra burden to health care providers.
Q: While the waiver makes it easier to give and coordinate care, it doesn’t provide information to the general public. Our local newspapers are full of comments by people who say that they should be allowed to know the names and addresses of those who’ve tested positive. What do you think of that idea?
A: Well, to start, there’s very little good that can come of it, and a whole lot of terrible things.
On the front end, if the identities of those who tested positive were disclosed, it would discourage people from being tested and being identified as someone who is infected, which is an awful thing.
Q: My sick neighbor isn’t a threat to me?
A: I’m assuming that people are going to self-quarantine, and so the neighbors are not going to be exposed anyhow. When you tell all the neighbors that somebody in their block is infected, who knows what bad things are going to happen.
Crazy people do crazy things; someone might throw a Molotov cocktail through their living room window to try to force them to leave the town or the country. So, no, [publishing names] is a really bad idea.
HIPAA doesn’t apply to businesses, but other laws — like the Americans with Disabilities Act, the Equal Employment Opportunity Act and the Rehabilitation Act — require employers to protect the privacy of their employees and limit what information they can share with others in the workplace.
Q: It’s easy to overlook the impact of discrimination that can come with health status, as was seen in the 1980s with the H.I.V. epidemic. Are hospitals allowed to share the names and addresses of individuals who’ve tested positive to first responders?
A: Yes, [what’s allowed under HIPAA] is quite broad under normal circumstances, and the emergency suspension of certain rules is designed to prevent obstacles to health care providers who’ve got emergencies all around. Not all the rules are waived, but they’re trying to balance the issues of privacy and public welfare in rather extreme circumstances.
Q: So if privacy concerns haven’t contributed to the spread of the virus in the U.S., what do you wish had happened to help contain it?
A: The number one problem we ran into was that we had no capacity to do tests before the pandemic was a pandemic. Starting in early February, we should have been in a position to roll out lots of tests. And we had nothing. The only thing we had was the CDC [Centers for Disease Control and Prevention] laboratory in Atlanta, and they could do a hundred tests a day.
Q: Other countries had tests. Why didn’t we?
A: The CDC decided that they didn’t want to use the WHO [World Health Organization] test that was available, the one that was developed in Germany. They thought that they could come up with a more accurate test and so they said, ‘No thank you’ to the WHO, ‘we’ll get our own.’ When they got their own rolled out and distributed to the state laboratories across the country, it wasn’t working.
Q: What was wrong with the tests?
A: They got a high rate of inconclusive results, and they basically had to throw the test out. And we were left with nothing. We had to start from scratch, bringing in the private sector and the traditional medical labs to gear up.
We’ve finally got some quick turnaround tests, but that’s a major problem. If you don’t know how many people are infected, where [the virus] is, how it’s spreading or — on an individual level — whether this, that or the other person has the virus, how can you possibly hope to control this?
Q: What do you think of how Americans have responded?
A: The question in the public health community was, if we had a serious epidemic in the U.S., would our citizens fall in line and do what public health authorities and government officials told them they needed to do? The U.S. is known for our libertarian ethos. We are a country of Lone Rangers, where we support and honor nonconformity, independence and rugged individualism.
Q: So how would you say the Lone Rangers are doing?
A: During this coronavirus pandemic, by and large, people have said, OK, we’re going to do it. We’re going to not go into work. We’re going to stay home. We’re going to do all these other social distancing measures. We’re not going to be out on the streets. We’re not going to be in groups.
There have been some notable exceptions, a little hoarding and some spring-break college kids and the others that you’ve heard about. But, amazingly, by and large, we’ve done it. There are people who didn’t think this was going to happen, and I wasn’t so sure myself. Despite the fact that I give some of our government agencies and elected officials low marks overall, I’m giving my fellow citizens an A+.
Sheila Miller is a journalist and writer based in New Mexico.
Read more coronavirus coverage here.