AIDS taught us a lesson: Information can save more lives than medicine

AIDS taught us a lesson: Information can save more lives than medicine
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Nearly 40 years have passed since the global health community first took aim against a mysterious new disease with no treatment and no cure. The disease was called AIDS, and the lessons we learned in our fight to bring it under control came at a very high price. That’s why I’m alarmed and dismayed to see those lessons being cast aside right now in the U.S. 

I’m an infectious disease physician and epidemiologist who has been fighting epidemics for nearly 40 years. At the height of the AIDS epidemic, I was assigned by the World Health Organization to work with Uganda, where at the time approximately 30 percent of the population was infected with a disease that was 100 percent lethal. Everyone there knew dozens of people who had died or were dying and the disease just kept spreading.  

Like COVID-19, AIDS at that time was a new ailment that was poorly understood. Like COVID-19, there was no cure and no effective treatment. We studied it, we stumbled, we fought, and we made mistakes in our effort to save lives. Eventually, we finally learned — the hard way — what worked. By the time my team left, new transmissions had fallen by 70 percent

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We succeeded by using the only weapon left in our arsenal, which is the same one we are fumbling with in the U.S. right now — strong, effective and honest communication. 

When AIDS arrived, most Ugandans understandably did not grasp the concept of invisible transmission or prevention of a new disease, no matter how we tried to frame it. Changing sexual behavior, which is arguably one of the most difficult behaviors to modify, was nearly impossible. In parallel to what we now see across the U.S. media, misinformation and finger-pointing led to widespread confusion and discord. 

The solution? Constant, non-stop messaging, delivered at the community level by trusted community members about how the disease was transmitted and how it was not, combined with support in making the changes needed. With time, Ugandans absorbed the correct knowledge and shared it with one another. Millions of lives were saved. 

We are now faced with COVID-19, another new disease that still has no effective treatment, cure, or vaccine. But this time, we do know what to do. And we are failing miserably. 

The hard truth is that, like Uganda in the 1980s, our society still does not fully understand or trust the information on COVID-19 transmission and proper preventive behavior. We are confused by conflicting reports and non-intuitive information: Has the wave passed? Has it come back? Is it really in the air? How can I get it from someone who looks perfectly healthy? Can they live in clothes? Did I get it already? What is safe? Is it treatable with medication? Is it even real?

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The conflicting and confusing messages have led us to where we are now — at risk of a severe uptick in mortality as the country begins to reopen. We simply don’t, as a population, understand the virus and its transmission well enough to be making policy decisions under social pressure caused by inaccurate or misleading information. Doing so could lead to far more severe economic and health consequences now and in the future. 

Right now the only thing keeping COVID-19 from infecting the entire country is the personal behavior of individuals. That behavior is affected by all the noise, fear, blame and anger that characterizes the public debate on COVID-19. 

We will only stop this disease once and for all when we get everyone to understand why wearing a mask is not a political statement, why keeping your distance has nothing to do with freedom, and why reporting symptoms is of critical importance to the country we all love. If we focus on these basics, everything else will follow. 

But the challenges we’re currently facing on this front remind us that when it comes to information sharing, we don’t live in one America. There are tens of thousands of Americans, each with their own locally trusted information sources. Different communities get information in different ways, and we are fooling ourselves if we think everyone is absorbing the messages put out by what we call mainstream media.

We need to do a better job of delivering the truth to our citizens — all of them. We need to be reaching out on an individual level in some cases, to deliver information that just won’t get through otherwise. 

My organization works with under-resourced communities, and we are doing everything in our power to deliver information to them through trusted messengers. That can be by text message, by Facebook, even by shouting across a sidewalk. 

We all have a responsibility to transmit trusted information, such as CDC and WHO guidelines, to those in our social and family circles. We cannot afford to keep quiet. We cannot afford to let people die for lack of information.

AIDS taught us that complacency kills. AIDS taught us that transmission can worsen when messaging fails to adapt to society and people begin to minimize the risks. I fear that is happening to us right now.  

Opening up as soon as possible should not be our goal line. The goal has to be the stopping of transmission and to do that, we all need to be playing on the same team. That means all of us, and especially the government and public health officials, need to be honest and truthful about what we are dealing with. For all of us, the time has come to stop arguing and start communicating. 

Gary Slutkin, M.D., is an epidemiologist, an innovator in violence reduction, and the founder and executive director of Cure Violence. He previously served as medical director for the San Francisco Health Department Tuberculosis Program and worked for the World Health Organization reversing epidemics, including Uganda’s AIDS program, the only country to have reversed its AIDS epidemic.