In the first month of the pandemic, I spent countless hours answering phone calls on a free COVID-19 hotline in New York City.1 Most callers would describe symptoms or scenarios leading to their call and would ask to be tested for COVID-19. They would share how they were scared, had heard mixed messages about COVID-19 from friends and social media accounts, and were unable to reach their primary care doctors. They had endless questions about what social distancing meant, how the virus could be transmitted, and the best ways to stay safe. Though the limited availability of tests in New York City at the time made it impossible to offer tests to most callers, many of the over 90,000 callers hung up getting what they actually needed—personally tailored information on how to stay safe during a pandemic.
Using an individual’s motivation for testing as a means to educate and counsel on behavior change is not a new strategy—I had used it previously as an HIV test counselor prior to medical school. Test counseling was started in the early days of the AIDS epidemic, where no cure was available and fear, stigma, and homophobia interfered with accurate public health messaging. Even after the advent of HAART, test counseling remained the standard of care until the recent rise of pre-exposure prophylaxis. Counseling was valued for its role in helping individuals understand disease transmission, assess individual risk, and anticipate the impact of a positive test result. In using non-medical professionals who were trained only to perform test counseling, patients can have a more relatable provider and physicians can have more time to address medical management for their patients.
The early days of HIV/AIDS are quite similar to the early days of the COVID-19 pandemic. With the availability of a viral test without a cure on the horizon, a diagnosis can feel devastating for some who receive it. Politicization of the viruses has made access to accurate information too often inaccessible. Stigma plays a role, as some wrongly say that a patient “deserved” the disease for failing to follow recommendations for abstinence (from sex or IV drug use for HIV, and from social interactions for COVID-19). For both viruses, public health guidance is transitioning to a harm-reduction approach. With HIV/AIDS, we had the rise of safer sex; with COVID-19, we have the rise of safer socializing.2
With a record number of tests performed daily, we must transition away from testing as a means to purely monitor viral spread, and towards testing as a means to share evidence-based information on how to remain safe during a pandemic. We must make COVID-19 test counseling the standard of care.
To make test counseling work, we must empower people to make informed decisions about individual risk based on their individualized risk profile and behavior. With almost 30 years of HIV test counseling, we know strategies that tend to work. The World Health Organization calls these the 5 Cs: consent, confidentiality, counseling, correct test results, connection/linkage to care. Each of these steps has a role in COVID-19 test counseling.
Consent and confidentiality require currently missing legal protections. We have learned from HIV that people avoid getting tested if they are fearful of what a test result means or how it may be used against them.3 With fewer people tested, the chance of inadvertent transmission increases, and public health is threatened. Thus, testing must always be optional, with laws barring employers from obligating tests for work or firing someone based on a test result, barring insurance companies from using COVID-19 tests to determine life insurance policies, etc. Positive test results are reported to local health departments for tracking and tracing, but as with HIV, it must be illegal for the health department to share information with any other branch of government, including law enforcement or immigration agencies. An individual’s COVID-19 status must remain their own personal health information. All COVID-19 tests must come with transparent and explicit disclosures as to with whom the results will be shared.
Counseling for COVID-19 must occur in a non-judgmental manner where individuals are given space to discuss their understanding of COVID-19, its transmission, and what they do to keep safe. This “individual risk assessment” allows for behavior change and empowerment. We must understand that home quarantine is a privilege and help those who need to leave the home and interact with others may do so in the safest way possible. We must adapt our messaging to meet our patients’ needs, using motivational interviewing to help them strategize ways to make their daily routines safer. For some, this may mean strategizing how to reduce exposure at a work place or where to take “mask breaks” during the day. For others, it may entail brainstorming how to increase air circulation or rearrange beds in a mixed generation household. Individuals know their lives best—in serving as a resource, we can help our patients make tangible plans and enact behavior change.
Before patients undergo testing, the type of test performed, its limitations, and its implications must be discussed. This is particularly true for patients who request antibody testing, where there remains limited understanding of if an antibody test result has any clinical meaning. If patients misunderstand or misuse test results, we may do them a disservice by accidentally increasing risk-taking behaviors. For instance, a person with a negative COVID-19 PCR test may assume he/she is not infectious and visit family, despite actually having been within the window period for the test. A person with a positive COVID-19 antibody test may use this as a license to gather, without recognizing that he/she may still serve as a vector for disease transmission. With HIV, a negative test result despite risky behavior has been shown to increase inadvertently future risky behavior.4 Counseling about how an individual plans to use their test result is necessary to avoid unintended consequences of our medical interventions.
Immediate connection to a healthcare provider for those who test positive is an important step, as studies for HIV show a steep drop off in care-seeking behavior with each increased barrier in establishing care.5 Anticipatory guidance and support for those who test positive—including access to a pulse oximeter—can help patients know when to seek medical attention, and how to disclose their status to others if they feel it is necessary. We can provide our patients with tailored resources, such as NYC Health + Hospitals’ take care packages distributed to COVID-19 infected patients to assist in making quarantine feasible, or free hotel rooms for those who are unable to isolate from others.
Clearly COVID-19 test counseling must come with contagion precautions and may require the use of phone or video to allow information sharing and connection without increased risk of transmission. This can allow for remote counseling for patients in more rural areas with limited access to health care, who may eventually be able to self-swab but receive test counseling while awaiting mail-in results.
Similar to HIV test counselors, COVID-19 test counselors can be recruited from nonmedical backgrounds and trained by medical professionals. We can recruit test counselors from communities most hard hit by COVID-19 to ensure they are able to provide culturally and socially applicable advice to those at highest risk. Hiring counselors from disenfranchised groups can also help address some of the socioeconomic disparities exacerbated through the pandemic. General internists can be available to manage the team of counselors, results, connect with those who test positive, and address any urgent medical needs. Eventually, these test counselors can be involved in the rollout of the vaccine for COVID-19.
COVID-19 testing is as essential now as ever to improve epidemiological data, allow for contact tracing, and best combat the pandemic. Universal COVID-19 test counseling can enhance access to care and acute information alongside a test result. In conducting personalized risk assessments, we can transform testing into a public health intervention focused on behavior change and safer socializing to decrease the spread of COVID-19. For our patients, knowing their status is important; understanding its implications essential.