California is at a critical juncture in the battle to contain COVID-19. After weeks of lockdown and signs of a slowdown in new infections, the state is starting to ease shelter-in-place restrictions. There is broad agreement that widespread testing will be needed to make sure that California does not experience another surge once rules are loosened. This is particularly important in Black, Latino, and Hawaiian and Pacific Islander communities, which are among those hardest hit by the virus.
Yet access to testing nationwide has so far been riddled with problems and slow to expand. Evidence suggests minority groups are not being tested at a rate commensurate to the threat they face. To understand the barriers to equitable testing and potential ways to address them, I interviewed Dr. Georges C. Benjamin, longtime executive director of the American Public Health Association, which works to advance prevention, reduce health disparities, and promote wellness. This conversation has been edited for length and clarity.
Q: The data so far strongly suggest there are significant racial and ethnic disparities in COVID-19 cases and deaths across the US. What are some of the underlying reasons for the disparities?
A: We know that people with chronic conditions like diabetes, asthma, heart disease, and chronic obstructive pulmonary disease get sicker and die earlier with COVID-19, and Black Americans tend to get a lot of those diseases at younger ages. Racism and discrimination have created a legacy of unequal access to health care and differences in the quality of care received and in the social factors that affect one’s health. So when we talked about people 65 years of age who have chronic diseases being more at risk, a lot of people misunderstood that to mean that if you are young, you don’t have to worry. For Black people, the truth is that even if you’re young, these chronic diseases seem to put you at extreme risk.
Q: Why is it important for public health officials to consider demographics when crafting a testing response?
A: If you really want to do good public health, everyone who has symptoms or is at high risk needs to be tested. But inherent biases held by the people leading the response inform such things as where the testing site is located and how easy it may be to get there. These factors can play a huge role in determining who gets tested. Many of the drive-in centers have been in places inaccessible to minorities or people without a car. If you’re not feeling well, taking two buses to go get screened is probably not on the top of your list. The people who make decisions about the location of testing sites should always vet these choices with representatives of the entire community. They should also consider the challenges for people who don’t drive or live in communities lacking easy access to affordable transportation.
Q: In a presentation you gave recently to the National Academy of Medicine, you described a long list of potential barriers to equitable COVID-19 testing. What are the main hurdles?
A: The biggest challenge is overall health inequities because of limited access to testing and care. But when you dig deeper, you also see differences in how people perceive testing. We have people with symptoms who don’t want to go to the doctor because they know if they test positive, they’ll be told not to go to work, and they don’t have paid sick leave so they can’t afford to take off work. There also are people who just don’t trust the government or health care system. They may actually think the test gives you the disease. Then there’s the test site location and the cost of the test. The screening test itself may be free, but the appointment to go to see the doctor may not be free. Depending on the patient’s condition, the necessary related tests may actually be quite expensive. If you don’t have a doctor or if your doctor doesn’t have the test, then you’re not going to get screened. A lot of people who don’t have a regular physician get their care in the hospital emergency department. Emergency departments were not designed to do screening.
Q: When we talk about racial and ethnic disparities, are we talking primarily about Black populations? Or do these disparities extend to other populations too, such as Latinos?
A: It absolutely extends to Latinos and Asians. . . . It’s all about unequal exposure to the virus. We think that more than 25% of the population that gets infected is asymptomatic while still infectious. If you’re in a public-facing job like so many ethnic and racial minorities, you are at a high risk of getting infected. If you do get infected, you may expose other people to that disease. One extremely high-risk group includes anyone working in or living in a congregate setting, like a nursing home. We are seeing unacceptable job-related outbreaks among meat-packing and farm workers. This is also a big problem for those who are incarcerated. The enormous injustice here is evident when we consider that people of color have been incarcerated way out of proportion to their population. Infectious diseases such as COVID-19 can ravage people in settings like this.
Q: Why do many people of color distrust the health care system?
A: Your level of trust relates to how you’re treated when you use the system. Based on your color, people often talk down to you, and they may assume that you are not as knowledgeable or educated as you are. Some of our most revered academic health centers sit in the middle of communities with some of the worst health statistics. These communities see lots of people of color going in to the hospital but not coming out alive. This creates a fear and mistrust of the institution. One reason for this mistrust is that people who have lacked access to health care often go into those hospitals with more advanced disease, so they die early even with the best of care. But the community sees that as suspicious. In the old days, which wasn’t that long ago, we had segregated wards in those institutions, and people weren’t treated equally. So this mistrust is indeed based on historical inequities, and people don’t forget.
Q: If you could design a testing system for COVID-19 that overcomes these barriers, what would it look like?
A: First, I’d make sure everybody had access to health care. As a nation, we have failed to do that. We have to eliminate the cost barriers. The government does pay for the tests. But as we discovered with preventive screening tests under the Affordable Care Act, it does not pay for the medical evaluation that often precedes the test. This is especially true since many people presenting with COVID-19 have symptoms other than the classic respiratory ones. If you want people to be tested, you have to make it clear that this is a public health measure that protects them and others and that cost isn’t a barrier. We also need much better regulatory oversight of the tests being offered today to ensure that they are quality tests. A bad test erodes trust, undermines confidence in testing, and does no one any good.
We should do comprehensive public education campaigns. With HIV/AIDS, we did a lot of messages in specific communities we wanted to reach such as gays and lesbians and people of color. We used radio, we used TV ads, we used posters, we wrote brochures in multiple languages for people who didn’t speak English as a first language. We wanted trusted messengers, so we educated barbers, beauticians, faith leaders, and community leaders. We went to town hall meetings. We need to do the same thing here.
And obviously we need to address the whole range of social determinants — issues with transportation, housing, etc. — that result in disproportionate numbers of our people having diabetes, heart disease, and hypertension. That’s a longer-term issue, but in the short term, we need to target those folks for screenings . . . and recognize that the age distribution for those diseases is much younger for people of color.
Q: When we’re talking about testing, do we mean testing for the virus or antibodies — or both?
A: Both. Certainly the viral tests are important for people who have public-facing jobs, because you want to know if they are infected and contagious. And you’re not going to test just once. We’ll have to do it periodically until we get our hands around this. The antibody test is done for surveillance purposes, because we want to know who’s had the virus. Because at some point, we need to know that 70% of the community or more has had it, as a measure of herd immunity. Of course, the best way to get to herd immunity is with a vaccine.
Q: How will we know whether we’ve been successful?
We’ll know we’ve been successful when we have a health system that can handle the current load of sick people and when health departments and people doing the testing tell us they’re not turning away anyone because they don’t have enough tests.
It’s been generally said that if your test-positive rate is more than 10%, you’re clearly missing some people that are positive. The lower you can get that rate — say to 2% or 3% — the better. When we start seeing the numbers change and have fewer sick people and that we’re testing the same proportion of people by race and ethnicity as their share of the population, we will know we have equal access to testing.
We also need to be sure we are testing the people with the highest risk. In practice, that means adequate testing for ethnic minorities and others who have a greater burden of chronic disease or are in jobs with greater infection exposure risk. In the end, the best barometer of health equality is equitable improvements in health outcomes for all.
Q: How does California fit into all this?
A: Because it’s such a diverse state and because it has been an early adopter of methods to flatten the curve, California can show us how we can begin to change the disparities. It’s very important that decisions be data driven.
Q: Do you think we can and will be able to achieve success?
A: Well, I’m optimistic, but it’s going to take us rolling up our sleeves. Obviously, we’re challenged with this outbreak. It’s not over. It may come back as a new, large wave. It may stutter along all summer and then into the winter. We don’t know. The truth is we now need to build once and for all a sustainable public health system linked to the medical care system so that we can rapidly identify when a new disease enters the community, whether it’s COVID-19, opioids, obesity, or another infectious disease. Then we need to rapidly contain it and figure out how to keep it from happening again — all while ensuring that solutions are carefully designed to include everybody.