Haunting lessons from 40 years of fighting AIDS

Opinion by Kent Sepkowitz

Recent headlines about the Covid-19 pandemic have careened between the hopeful — in countries with effective vaccination programs — and the tragic, as the unimaginable death toll in India and elsewhere continues to rise.

Forty years ago this June, we saw the start of another global health crisis when the acquired immunodeficiency syndrome (AIDS) was first reported in the Morbidity and Mortality Weekly Report (MMWR) and brought with it a similar sense of doom. Much like the onset of the Covid-19 pandemic, the initial wave of AIDS infections upended the world.

While Covid-19 was particularly devastating for the elderly, AIDS initially killed mostly young, gay men with a harsh, relentless illness that crippled the immune system and led to cancers and severe secondary infections. In the early years, it seemed to be universally fatal. Now a global disease affecting men and women in equal proportions, AIDS has killed more than 32.7 million people.

Although the death toll is chilling, real progress has been made in diagnosis and treatment. Rates of new infection and death continue to gradually drop. Initially, though, control was evasive: it took nearly four years after the MMWR report for the Food and Drug Administration to license a commercial blood test to diagnose the causative virus while treatment with potent and effective antiviral medications was not available till the mid-1990s, fifteen years after recognition of the disease. Unfortunately, a vaccine to prevent or treat the infection remains elusive, despite decades of trying.

In contrast, a diagnostic test and effective vaccine were available within a year of the emergence of Covid-19. Although the epidemiology and pace of the two global infections are vastly different, attempts to control each disease have been hampered by very similar obstacles. The experience managing the AIDS crisis may help inform what to expect and what to avoid as we move into the second year of the Covid-19 pandemic.

The first official report that described AIDS was published in 1981, just as President Ronald Reagan settled into office. While the Centers for Disease Control and Prevention (CDC) worked tirelessly to elucidate the dimensions of the disease, the White House response was extremely slow, suggesting a profound lack of interest in the fate of the thousands of young, homosexual men. In 1984, Larry Speakes, Reagan’s press secretary, responded to a question about Reagan’s view of AIDS by stating, “I haven’t heard (Reagan) express concern.”

Reagan waited four years into the epidemic — and months after his reelection — to make any public reference to the disease. A senior member of the US Department of Health and Human Services prevented Surgeon General Dr. C Everett Koop from answering any AIDS-related questions at news conferences and he was barred from attending the Executive AIDS Task Force. In 1986, the White House also sought to cut federal funding on AIDS instead of investing in research and developing more programs to confront the problem.

This malign neglect mirrored that of President Donald Trump, who downplayed the severity of Covid-19 and told the American people that “one day … like a miracle it will disappear.” While the White House formed a coronavirus task force, Trump hampered their efforts with tweets and other comments filled with false and misleading information.

When hope vanished that the AIDS epidemic might end quietly, the Reagan team shifted its avoidance strategy. It began to blame foreigners. This approach culminated in a 1987 ban on persons with known HIV infection from entering the United States. It was not lifted until 2009, 22 years later.

The same attempt to distract from the real issue has been tried with Covid-19. In the early days, many sought to blame China — as if establishing a scapegoat would solve anything. (Even though the Biden administration is still reviewing the possibility of a lab leak, there still isn’t conclusive evidence to support that theory.) Later, it became a battle between the states. Last spring, for example, Florida blamed New York for fueling Covid-19 cases. Months later, New York began to point the finger at Florida as a source of the contagion.

The final line of evasion, after Ignoring the problem and pointing fingers fail, is to proclaim that the problem — AIDS, Covid-19 — is wildly overblown or, in the extreme, never existed at all.

This extreme denialism did not overtly take root in the Reagan government though it was — and still is — a core belief of many individuals and even some government leaders. Globally, AIDS denialism has had a tragic impact, causing thousands of deaths because political leaders, particularly former South African President Thabo Mbeki, refused to acknowledge the problem and provided no medical or public health resources.

Similarly, there have been world leaders among extreme minimizers and flat-out deniers whose anti-science attitudes have weakened the public health response to Covid-19 and contributed to their country’s death toll. President Trump’s uncoordinated and at times uncomprehending response seemed to be rooted in his belief that testing, rather than the disease itself, was fueling the epidemic, a form of Covid-19 denialism that undoubtedly contributed to lost American lives.

This type of “hoax-based” thinking has thwarted a broad provision of simple and cheap ways to curb the spread of each virus: for AIDS it was condoms and sex education, for Covid-19 it has been masks, social distancing and now, effective vaccines.

The attitude has also set the stage for our current predicament. It may be impossible to stamp out Covid-19, despite the existence of effective vaccines; similarly, HIV continues to spread despite the fact that effective therapy was introduced nearly 25 years ago. This is not a surprise — pills and shots are never sufficient to stop an infectious disease; people need to know how to prevent transmission and any drugs or vaccines need to be widely accessible. Most importantly, people must be willing to take them.

As we have seen, public health is not just a medical science but rather a societal collision of many things, including epidemiology, superstition, feuds, Grandma’s advice, bad habits, avarice and heart-gripping fear. Clinical work is the easy part. The scientific tangle of viral variants seems a small problem when measured against the difficulties created by a hardened nonbeliever or the cheap assurance of a government official in a hurry.

Given these many limitations and perturbations, what can we learn from 40 years of trying to control HIV infection? Plenty. The first lesson is to accept that the big breakthroughs and thrilling headlines are largely over.

Despite remarkable progress, the real work to control the Covid-19 pandemic starts now — careful, laborious and even boring work — to develop and implement effective programs to address local needs. With AIDS, the CDC has tried to jazz up the effort by calling it the “Ending the HIV Epidemic” campaign. But underneath the gloss is the work that public health professionals — at the local, state, and international levels — do so well.

Community by community, door to door, or hand to hand, they meet the local challenge with programs to track down cases and contacts, bring treatments to someone’s home or to prisoners, the homeless, and other vulnerable people around the world who live without easy access to modern health care. It’s a million points of hard-earned light.

The work is done despite the distractions of the skeptics and the insincere promises of slippery politicians. Slowly, sometimes disappointingly and inefficiently, thousands of workers persist. AIDS has shown us this inch-by-inch strategy is the only way forward with Covid-19. Hopefully, the dimming spotlight of attention and ever louder screams of denial will not deter us. Because if we falter now, we will find ourselves trapped in an eternal 2020, stepping forward — then back — as people continue to die.