Anthony Fauci on HIV/AIDS and the stigma of COVID

On June 5, 1981, the Centers for Disease Control and Prevention (CDC) released a report on a rare form of pneumonia and lung infection. A month later, a story New York Times Under the headline “41 MALE SEXUALLY RARE CANCER”, he detailed a disease that strikes gay men in New York and California.

Three years later, this “rare cancer” was officially diagnosed with Acquired Immunodeficiency Syndrome, a disease caused by a retrovirus that interferes with the body’s ability to fight infections and disease. Panic was felt around the world as scientists raced to understand how the new infection, better known as HIV/AIDS, is spreading and who is most at risk.

That same year, Anthony Fauci, a physician and head of the Immune Regulation Laboratory, was appointed director of the National Institute of Allergy and Infectious Diseases (NIAID).

“In 1984, the virus was discovered, which initiated a series of extraordinary studies to determine the pathogenic mechanisms of HIV. But more importantly, it allowed us to do critical research to begin developing effective drugs for HIV,” says Fauci. PopSci in a recent interview.

H. Clifford Lane (left), one of the first researchers to examine the immunopathogenic mechanisms of HIV disease, and Anthony Fauci (right), who made an influential contribution to understanding how HIV destroys the body’s defenses and leads to progression to AIDS.
NIH History Office and Stetten Museum

In the late 1980s, it was estimated that around 700,000 people of all genders and sexual orientations were living with HIV. While information about the virus and the disease has progressed steadily over the past 40 years, the fight against the epidemic continues globally.

According to World AIDS Day, an international awareness event celebrated on December 1 each year, an estimated 38 million people worldwide are currently living with the virus. More than 35 million people have died from HIV/AIDS-related diseases since it was detected.

But Fauci, who has been working on HIV/AIDS since the first cases emerged, has found hope in treatments and advances that have helped patients live longer over the past four decades. In 2003, the President played a key role in the development of the AIDS Contingency Plan (PEPFAR), a program that he is proud to be a part of and a key point in government funding for the global pandemic.

“This program has now been shown to be responsible for saving literally 20 million lives worldwide,” says Fauci.

[Related: Rare transplant cells have cured another HIV patient]

Yet despite scientific progress, unequal access to HIV/AIDS treatment has been difficult to resolve, and there is another stigma, less scientific and more social: the stigma that accompanies new diseases. As cases unfolded, people with HIV/AIDS were often alienated, ignored, and even hated by society. Discussions about sexual orientation, promiscuity, and individual behavior often focused the blame on the gay community and later on drug users, as these groups made up the bulk of cases in the 1980s and 1990s. This negative connotation still deters some people from seeking treatment.

“Stigma is the enemy of public health,” says Fauci. “There is no place [for] Do not be stigmatized when dealing with a disease, because that disease [that] The problem is not the people affected.” He and the National Institutes of Health were direct targets of the AIDS Coalition’s Unleash the Power protests in 1990. The organization formally urged Fauci to involve its members in the development of HIV drugs.

Anthony Fauci with COVID mask and red AIDS ribbon chatting at the World AIDS Day 2021 meeting at the White House
Anthony Fauci speaks to a guest during an event to commemorate World AIDS Day with President Joe Biden at the White House on December 1, 2021, in Washington, DC. Anna Moneymaker/Getty Images

The stigma of illness often attributed to minority groups continues today. For those who remember the early days of the HIV/AIDS crisis, this year’s global monkeypox epidemic seemed to reflect prejudice against the gay community in the late 20th century. In particular, during the COVID-19 pandemic, Asian communities have been accused of bringing the coronavirus to the United States. Black, Native American, and Latino Americans were also disproportionately affected by the disease.

As the infection spread everywhere, Fauci had to address stigma as she simultaneously shared her medical information and returned to her role as the nation’s foremost health communicator.

“Given the circumstances of a historic epidemic, I felt that as a scientist and as a public health official, I needed to rise to the level of trying to create a policy that would make the best of science available to the American public as the application of the messages necessary to get the right public health interventions,” he says.

Now, nearly three years after the first coronavirus cases, the stigma is being felt by those who have long suffered from COVID. An estimated 16 million Americans (the number could rise) are currently experiencing the debilitating condition.

[Related: The 5 phases of COVID’s endgame]

“I think there’s been a strong implication from the beginning of the COVID pandemic,” says Marija Pantelic, a lecturer on stigma and illness at Brighton and Sussex Medical School in the UK. PopSci. “We were hearing so many witnesses that [of long COVID]but there weren’t really any studies I could find that looked at the extent of this problem empirically.

Pantelic spearheaded a study published November 23 in the journal PLOS One revealed that most people who have lived with COVID for a long time experience some form of stigma directly related to their condition. He and colleagues surveyed more than 1,100 patients about applied stigma, internalized stigma, and expected stigma experiences. They found that 95 percent of adults surveyed in the UK experienced at least some form of stigma, and 76 percent experienced it “often” or “always”. These numbers shocked Pantelic.

“I think a notable difference in stigma has long been the really psychologizing of COVID, which means people are being told it’s all in their head,” he says. “Even many healthcare providers deny it.”

According to Pantelic, raising awareness about diseases such as HIV/AIDS and long-term COVID is often an important first step. Numerous groups, such as Long COVID Support and the Long COVID Alliance, have emerged since the start of the pandemic and have used platforms like social media to mobilize efforts.

“Acknowledging the role of communities is really important. Pantelic, I think taking action is an important similarity between HIV and COVID. “It would be great for us to learn from the HIV movement.”

“Stigma is the enemy of public health.”

Anthony Fauci, director of NIAID

But it doesn’t stop with raising awareness: Keeping people safe takes hard and long-term work. Currently, public health organizations are working to correct the mistakes of the past, and the World Health Organization announced on Monday that it will rename monkeypox to mpox to combat stigma and stereotypes.

Action for HIV/AIDS has led to treatments such as daily antiretroviral therapy and the HIV prevention drug PrEP, which helps keep the virus at bay. Current treatments are long-term “forever” pills that can make the disease less deadly but still allow it to persist as a chronic disease in patients.

[Related: The first people have received an experimental mRNA HIV vaccine]

“I think we’ll get more user-friendly treatment methodologies and long-acting antiviral drugs that can be given maybe every six months,” says Fauci. “This is an incredible improvement from a single pill.” There is also hope that, in the future, an HIV vaccine could change the course of the disease and hopefully remove the stigma.

After 54 years at the National Institute of Health, 38 years at NIAID, and seven presidential administrations, Fauci has faced direct stigma and scientific challenges, from HIV/AIDS to Ebola to Zika to COVID. He plans to continue writing, teaching, and working while leaving government service at the end of December.

“I can help the efforts of the public and global health,” he says, “perhaps inspiring and encouraging young people to pursue careers in science, medicine, public health, and hopefully a public service.”

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