Who Has A Right to Know A Person is COVID Positive: Lessons from HIV


Craig Klugman

Publish date

Tag(s): Legacy post
Topic(s): Cultural Decision making Health Regulation & Law HIV/AIDS Privacy Public Health

by Craig Klugman, Ph.D.

In a lawsuit this week, a judge in Cook County (IL) ruled against a suburban that wanted to force the county “to share the addresses of coronavirus patients”. The judge justified the ruling by explaining concerns about keeping privacy and preventing discrimination. The EMS system feels this information is necessary so that “first responders can take adequate precautions”. Hearing about this debate stirred memories of similar debates 35 years ago over whether the names and addresses of HIV positive patients should be publicized. At one point, I recall proposals to put up the names of people with the virus on billboards (though I could not find any historic documents to support this memory).

Back in the 1980s, debates around people found positive with HIV included should the patient be quarantined? Arrested if their behavior threatened others? Jailed if they infected others? Immigrants were turned away if they tested positive. Some states had a standard of anonymous reporting because there was a high level of discrimination in housing, employment and even receiving medical treatment for people with the infection. Other states reported names to public health officials. Back in 1989, New York City which had anonymous testing, certain officials wanted the names of HIV patients released to public health authorities for purposes of tracing and reporting. At that time, some expressed the opinion that there was a public interest in knowing who was infected to protect sexual partners, insurers from taking on the high costs of treatment, and health care providers from exposure. After all, it was only in 1987 that the AMA said doctors are obligated to treat HIV patients and that the patients have a right to privacy and confidentiality.

Art by Craig Klugman

One big difference between then and now is the level of discrimination that members of the gay, IV drug use, Haitian, and sex worker communities faced even before the infection appeared. After HIV was on the scene, the discrimination worsened. A 1985 Gallup poll found, “One-third of American adults say they are less favorably disposed toward homosexuals as a result of the AIDS epidemic”. In 2020, there is a greater acceptance of people who are gay including gay marriage (though also lots of loss of civil rights protections in recent years). IV drug use is seen more as a medical disease than a criminal act and HIV is viewed more as a chronic disease. We also know that HIV spread requires intimate contact with bodily fluids.

Catching COVID-19 is far easier since it remains on surfaces for days and is spread through respiratory excretions and the discrimination is not against people who are infected (more on this later). Even with these differences, the HIV panic may offer some lessons and guidance on how to approach questions of confidentiality and privacy in our current outbreak. In the HIV literature, there had been controversy around (1) partner notification, (2) public health reporting, (3) community notification, and (4) protecting health care providers.

(1) In HIV, sexual partner notification was considered an important tool in limiting the spread of the virus. There was a long tradition of contact tracing for sexually transmitted infections, so this was not a unique approach. In some states, laws forbid physicians from sharing a positive test result; in other states a doctor could tell but they were not necessarily protected from claims of violating confidentiality; and in yet other states doctors were protected if they told. COVID-19 is not a sexually infected disease and there is generally no moral judgement for having been infected. Should a COVID patient’s partners be informed? Should the people they live with, work with, and interact with be notified? If I shop in a market and a clerk is found to have COVID, should I receive a notification to quarantine for two weeks (to protect others if I am shedding virus but asymptomatic)? The modern twist are the many proposals to use apps for tracing contacts. Instead of the traditional phone call, “Hello, Mx K. This is the Cook County Public Health Department. We are calling to recommend you get tested for Z since you may have come into contact with someone who has been diagnosed….” Instead, you will get a push notification message on your cell phone suggesting you quarantine and call your doctor because your phone’s Bluetooth came into range of someone who has been diagnosed with COVID-19. There’s not a question about partner notification because it will happen automatically and electronically. One difference between the two viruses that tilts toward the need for partner notification in COVID is that this coronavirus is easy to get and to spread.

(2) For public health name notification, the hope is that this will allow officials to perform contact tracing to isolate those who are infected, and quarantine those who may have been exposed. Such controls should limit community spread. There seems to be less discrimination under COVID than in the HIV era in regards to whether a person will have a job when they return to work, whether they will be thrown out of their housing, and whether they will find insurance coverage gone. New laws passed after the initial HIV epidemic also provide some protections in some places. In HIV, one concern was that reporting infections with people’s names (as opposed to anonymous) would lead to fewer people seeking testing since the social stakes were so high. In COVID, we have seen discrimination against the elderly, prisoners, and detainees who have largely been left in a closed living environment where the virus infects many. Protest marches to re-open the U.S. have also demonstrated strong anti-senior bias in signs saying it’s okay to sacrifice older people. Even elected officials are discriminating: Texas Lt. Governor Dan Patrick has said that grandparents should sacrifice themselves for the economy of their grandchildren. Discrimination against Asian-Americans since Trump called COVID the “Chinese Virus” are also on the rise. Allocation protocols based on quality of life discriminate against people with disabilities. Will people avoid COVID testing because of fears they could join a discriminated group? Probably not since the discrimination and hate crimes currently happening seem to be based on how people look, not on whether they have a positive diagnosis. Is naming necessary? Probably not since there are other way to achieve tracing (like the apps).

(3) Is there a need for members of the general public to know who has been infected (such as names on a billboard or an electronic map of houses of the infected)? Is there an advantage to knowing that everyone should avoid Bob because he has COVID? With our current limited testing, by the time Bob is tested, he may be very sick and he has been shedding virus for weeks. By the time the community would be notified, it would be too late to prevent spread. The best move is to practice shelter in place—to avoid contact with everyone at the moment (assume everyone, including yourself, is infected) and to wear masks when leaving home. Practice social distancing (recommendation is 6 feet though some studies have shown 10-13 feet would be safer) and wash hands thoroughly and frequently. General public notification makes no sense because scientifically it would not prevent infections and can only lead to discrimination. Instead, we must all practice universal physical distancing.

(4) The last category relates back to the recent court case—should health care providers and first responders be notified of the addresses and persons infected with COVID? On one side, it could help these individuals get access to health services, to assist in collecting more accurate epidemiological data, and to recruit people for clinical trials. Will knowledge protect health care providers? The HIV epidemic demonstrated that all health care providers should practice universal precautions at all time. Of course, that concept depended on having an adequate supply of personal protective equipment. In a hospital, when rapid testing is reliable and available, people can be tested before entering the facility—separating COVID and non-COVID patients in different buildings. As long as there is sufficient PPE, there is not a need to notify (especially by name)—just assume everyone has the virus. First responders should also assume that everyone has the virus, which may mean, in cases of a lack of PPE, that there are some procedures that are no longer done—like resuscitation or intubation that dislodges lung secretions.

The judge was right in saying that first responders do not need to know names and addresses of COVID-infected patients. Just assume that everyone has it. A history of debates over infection notification can offer insight into helping us traverse our current pandemic to protect health care providers and the public while also maintaining privacy and limiting exposure to discrimination.

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