Community Testing and Contact Tracing in a Time of Distrust

Disclaimer: The views presented here are of the authors and do not necessarily reflect the views of United Hospital Fund, its staff, or its board of directors.

By now, the data clearly show that the health and economic impacts of COVID-19 have hit Black and Brown New Yorkers much harder than others. Specifically, the pandemic has killed Black and Hispanic people at twice the rate of white people. And while 37% of New York City households report that at least one person has lost a job, that rate is 41% for the Latinx/Hispanic community (and 24% for white households). The existence of disparities and inequality is not new, and we are hopeful that the widespread outrage and new level of opposition to the systemic racism and injustice in our city will lead to more equitable public policies as well as robust investment in opportunity for people of color. In the health sector, there is emerging consensus that we need to reduce social and economic barriers to health as well as build and appropriately fund integrated social and health care models, particularly for our most vulnerable populations.  

In the meantime, as New York City heads into week 14 of the COVID-19 crisis—with an eye toward emerging from the social distancing “pause” next week—we must make sure that everyone has access to testing, with adequate resources for care dedicated to communities hit hardest by the virus and its economic and social sequalae. At last, we are beginning to see community testing being ramped up in earnest—a welcome development despite the collective outrage over how slow we have been to roll out testing in New York City and the U.S. more broadly. Each day we hear announcements from Governor Cuomo and Mayor DeBlasio respectively about State and City programs for testing in New York City, and increasingly the private sector is advertising the availability of testing for all as well. Thanks to the Cares Act, testing is free to everyone, including the uninsured. 

These are directionally positive steps. And yet, a CUNY survey reported that of the 12% of New Yorkers who were not able to get tested, 17% cited “inability to pay” for a test as a barrier. There are also reports of high error rates in the diagnostic tests, in part due to operator error associated with the swab process. Safety net providers, including many community health centers, lack adequate staffing and/or PPE and supplies to administer the tests. There are limitations to what the antibody tests tell us, even when they are accurate—and the CDC has reported that they often are not. (Nor are CDC data, apparently.)

Against this backdrop, guidance on testing continues to confound the public. As employers, employees, parents, seniors, and adult children of seniors, we are all awash in questions: Who are the trusted sources of information? Who should get what kind of test, what brand, what lab, where, and when? What is the difference between a diagnostic test and an antibody test? What does it mean if I get a positive antibody test? Am I immune if I have antibodies and for how long? Is it safe to go back to work? Will I have to pay out of pocket now, later, or will my insurance cover my test (if my family and I have insurance)? Can I refuse to take a test if my employer requires it? Where do I isolate if I am given a positive diagnostic test but live in a crowded apartment? Who will find out about my results? Can my elderly or less mobile/ home-bound/ high-risk relative or dependent get a reliable test at home? Should children be tested?

Better Communication and Access to Testing

COVID-19 has shown us the ways in which we are all socially and economically connected. None of us in New York City can return safely to work, school, or in-person convening outside of our bubbles unless we make it easy for everyone to access the right information, tests, results, and care. To help people make informed decisions for themselves, their families, their employees—decisions based on the latest guidance and options—there must be clear, coordinated, and culturally relevant communication disseminated from trusted sources. Insurers and providers must be held accountable for following the state and federal guidance, which are designed to reduce barriers to testing. We cannot have surprise billing, scams, or un-vetted products and services unleashed on the already weary public. And we need to offer people multiple ways to obtain results; not everyone has a smartphone, data plan, Wi-Fi, or capabilities to download results through a portal (as is required by some of the testing solutions). 

AIRnyc’s Community Health Workers meet people where they live to improve health, connect families to social care, and build health equity at the community level. Our organization is engaging vulnerable people during this crisis through our remote outreach on behalf of a variety of partners: health plans, the One City Health PPS, Mount Sinai, and other health care providers. Focusing on people with a history of uncontrolled asthma and other risk factors for emergency department visits and hospital admissions, our Community Health Workers screen for COVID-19 symptoms and help people make decisions about when to seek tests and treatment, how to access and adhere to medication while social distancing, and how to connect with clinicians through telehealth. Each encounter includes screening for social needs, the creation of a customized action plan, and support for navigating the fragmented social care landscape—with food insecurity being the top priority for weeks now. Engaging people who have every reason to distrust the health care system has always been challenging. 

Low Trust, Low Testing and Tracing

As we move into the next phase of testing and contact tracing, now under these unfathomable curfews and the surround sound of helicopters and sirens, it is important that government officials—including well-intended public health authorities, health care delivery organizations, and policymakers—recognize that deep and ever-increasing distrust runs through communities of color. The collective trauma from COVID-19 is real, raw, and relentless. One of our patients shared last week that she lost her mother and her grandmother to COVID-19; they were discharged home to a one-bedroom apartment shared by 10 people, and they both died at home. She herself tested positive for COVID-19, and it took two visits to two different hospitals to get tested. Her sister also got sick. Many people who have been staying home feel like they might get the virus if they go to a testing site. We’ve had seniors talking about the Tuskegee experiment and sharing that they have a deep distrust of government, perhaps now more than ever. 

As public health people and former colleagues of Dr. Tom Frieden at the New York City Department of Health and Mental Hygiene, we understand that contact tracing is critical. From the perspective of vulnerable populations, however, contact tracing means revealing the names of family, friends, and neighbors to the government. Sharing information with government workers and technology companies makes many of the most privileged white people nervous. And if we consider the experience of people of color—who have suffered racism, job losses, deportations, benefits elimination, not to mention mass incarceration and other forms of systemic discrimination—one can easily understand any reluctance to participate. Few people are aware that public health powers include involuntary quarantine, but the existence of that authority is unnerving. Since our first draft of this blog, this lack of trust has been exponentially amplified by the murder of George Floyd and the violent police response to peaceful protests here and elsewhere. Contact tracing programs must engage and reassure Black and Brown people by directly and consistently hiring from the most at-risk communities, by authentically incorporating input from community advisory groups, and by involving community-based organizations in outreach and bridge-building efforts. 

Further, when testing and tracing leads to quarantine—even for asymptomatic contacts—the economic tradeoffs are unbearable for people already feeling financial distress. Will sick leave apply to contacts advised by health authorities to stay home? Will people get official clearance to go back to work if they have had to use sick leave? One of our patients was a doorman, whose employer wouldn’t let him come back without a doctor’s note, which many providers are not issuing. Individual employers are all over the map, weighing their own interests against those of their employees unless and until public policy is set and clear guidance is issued. Vague promises of economic support won’t pay people’s rent or feed their families, and deferring evictions won’t solve the real problem when that lost income is irrecoverable.
We are facing unprecedented problems all around; a pandemic, a recession, and social unrest would each be challenging situations on their own. But we need to succeed at testing and tracing in New York City if we are going to get healthy, get back to work, and rebuild. For testing and tracing programs to be effective, they must be grounded in principles of health equity and social justice. And those principles must recognize the latest rounds of trauma our Black and Brown neighbors have experienced in these harrowing months, and, more profoundly, during the years of structural racism that got us here. 

Shoshanah Brown, MS, MBA, is founder and CEO of AIRnyc. Rose Gasner, JD, is Executive Vice President of AIRnyc. 

United Hospital Fund has a long history of bringing together diverse perspectives to address critical challenges in health care in New York. In the current crisis, it’s more important than ever to hear from all parts of the health care system. Today’s commentary from Shoshanah Brown and Rose Gasner of AIRnyc makes the case that community testing and contact tracing must be made available to all, particularly those hit hardest by COVID-19. – UHF President Tony Shih

June 5, 2020