The New York Times made an impact with a front page dominated by the “incalculable loss” of 100,000 people who have tragically died of coronavirus in the US.
The grim milestone puts the US far behind every other country in the world in dealing with the pandemic, and the death toll continues to rise day by day.
“They were not simply names on a list. They were us,” the paper read on Monday (May 25). “Numbers alone cannot possibly measure the impact of the coronavirus on America.”
So instead, the entire page was filled top to bottom with death notices of victims from across the country. Names, ages, hobbies, professions, personalities and favourite sports teams were among the personal details included to convey the sheer size of the tragedy.
It was a far cry from how the same paper reported the same number of deaths 29 years ago — the only difference being that this epidemic was HIV, not coronavirus.
The New York Times did not devote a front page to the first 100,000 people who died of AIDS.
On January 25, 1991, the death toll for AIDS in the US reached the same staggering number of 100,000. But because the bulk of those deaths were gay men, their plight didn’t warrant a front page headline.
Nor was it found on the second page, or the the third. The story was shunted back to page 18, hidden below the halfway fold of the paper. No pictures, and no names.
It apparently deserved less prominence than an article about the US Postal Service’s newest stamp.
“US reports AIDS deaths now exceeds 100,000,” the tiny headline read. Below it was a story written by the Associated Press — the New York Times hadn’t bothered to write their own — its cold language characteristic of the way “the gay plague” was viewed at the time.
“The death toll from AIDS in the United States has climbed to more than 100,000, with nearly a third of the deaths occurring last year, federal health officials said today,” the article began.
“The [Federal Centre for Disease Control] said the death toll is climbing and its researchers projected that in the next three years up to 215,000 more Americans will die of AIDS.”
The number of AIDS deaths in the US would eventually exceed 700,000, each one just as much as tragedy as those lost to coronavirus, even if the world refused to acknowledge the scale of the tragedy at the time.
As the New York Times says of the coronavirus victims, “none of them were numbers”. They were friends, lovers, children, siblings, parents, every bit as human as the COVID-19 dead. And they deserved just as much respect.
GlaxoSmithKline said an injection every other month of its cabotegravir drug was shown to avert an HIV infection more effectively than Gilead’s daily Truvada pill, potentially giving its ViiV unit a foothold in HIV prevention.
The drug trial involving men who have sex with men was stopped early by an independent monitoring board after cabotegravir was found to be 69 percent more effective than the current standard of care, Truvada, the British drugmaker said on Monday.
But the market segment GSK is eyeing is about to become more competitive as cheaper generic versions of Truvada are expected to be launched in the United States in September, as the patent expires.
Gilead, for its part, hopes that Truvada users will opt against the cheaper copies and switch to its new daily pill Descovy, approved in October 2019 after it was shown to be less toxic to the kidneys and bones.
Truvada generated $2.8 billion in sales last year, both from treatment and preventing an HIV infection.
Kimberly Smith, ViiV’s head of research, said a long-acting injection was a better route of administer because users have shown to struggle with a strict routine of daily pills, heightening the infection risk.
“Individuals have to show up every eight weeks in the clinic for the injection but in-between there is not a need to take a pill daily, so you really change the equation for adherence with a long acting (drug),” Smith said.
GSK, which is trailing Gilead in the HIV treatment market, will speak to drug regulators about a possible approval of cabotegravir based on the prevention trial, a spokesman said.
Prevention “has turned into a multi-billion opportunity for Gilead but we think consensus estimates include little or nothing for GSK in this market,” UBS analysts said in a research note.
GSK has won approval in Canada for cabotegravir as one of two key ingredients in long-acting HIV treatment combination Cabenuva, whereas in the United States, the company has run into delays seeking the go-ahead for Cabenuva.
An initial readout from the trial, which started in late 2016, was previously not expected before next year.
A similar trial to test the cabotegravir injection to prevent HIV in women, is still ongoing.
Pfizer and Shionogi & Co Ltd hold small stakes in GSK’s HIV-focused ViiV Healthcare division.
GlaxoSmithKline said an injection every other month of its cabotegravir drug was shown to avert an HIV infection more effectively than Gilead’s daily Truvada pill, potentially giving its ViiV unit a foothold in HIV prevention.
The drug trial involving men who have sex with men was stopped early by an independent monitoring board after cabotegravir was found to be 69 percent more effective than the current standard of care, Truvada, the British drugmaker said on Monday.
But the market segment GSK is eyeing is about to become more competitive as cheaper generic versions of Truvada are expected to be launched in the United States in September, as the patent expires.
Gilead, for its part, hopes that Truvada users will opt against the cheaper copies and switch to its new daily pill Descovy, approved in October 2019 after it was shown to be less toxic to the kidneys and bones.
Truvada generated $2.8 billion in sales last year, both from treatment and preventing an HIV infection.
Kimberly Smith, ViiV’s head of research, said a long-acting injection was a better route of administer because users have shown to struggle with a strict routine of daily pills, heightening the infection risk.
“Individuals have to show up every eight weeks in the clinic for the injection but in-between there is not a need to take a pill daily, so you really change the equation for adherence with a long acting (drug),” Smith said.
GSK, which is trailing Gilead in the HIV treatment market, will speak to drug regulators about a possible approval of cabotegravir based on the prevention trial, a spokesman said.
Prevention “has turned into a multi-billion opportunity for Gilead but we think consensus estimates include little or nothing for GSK in this market,” UBS analysts said in a research note.
GSK has won approval in Canada for cabotegravir as one of two key ingredients in long-acting HIV treatment combination Cabenuva, whereas in the United States, the company has run into delays seeking the go-ahead for Cabenuva.
An initial readout from the trial, which started in late 2016, was previously not expected before next year.
A similar trial to test the cabotegravir injection to prevent HIV in women, is still ongoing.
Pfizer and Shionogi & Co Ltd hold small stakes in GSK’s HIV-focused ViiV Healthcare division.
A World Health Organization (WHO) official said society has “come to terms” with HIV, but he missed a glaringly obvious point.
Mike Ryan, executive director of the WHO health emergencies programme, said at a conference Wednesday (May 13) that COVID-19 may “never go away” and referred to the HIV epidemic, which took hold in the 1980s.
“[COVID 19] may become just another endemic virus in our communities and this virus may never go away,” Ryan said.
“HIV has not gone away but we’ve come to terms with the virus and we have found the therapies and we have found the prevention methods, and people don’t feel as scared as they did before, and we’re offering life to people with HIV — long, healthy lives to people with HIV.”
Ryan said he was “not comparing the two diseases” but argued that the trajectory of HIV shows that nobody can predict when the coronavirus will disappear.
While Ryan’s point is important — that a vaccine to the coronavirus may never be found — suggesting that society has “come to terms” with the virus ignores a simple fact.
Not everyone has come to terms with the virus.
The queer community still lives with the scars of the AIDS crisis which took the lives of many, and contributed to rampant homophobia and transphobia in society.
Decades after the AIDS crisis began, there is still a stigma around HIV which means that people living with the virus are subjected to stereotyping, moral judgements, social isolation and healthcare discrimination. There is also the continued misconception that it is an LGBT+ person’s virus, when in fact, anybody can acquire HIV (thought it should be noted that in America, there is a worryingly high rate of new transmissions among queer Black men).
HIV transmission has dropped significantly with lockdown breaking the chain of new cases, a leading sexual health clinic has claimed.
56 Dean Street, a London-based sexual health clinic, is urging people to order free home test kits online in an effort to keep the number of new HIV cases down when the pandemic is over.
The clinic said HIV transmission has “plummeted” during coronavirus lockdown.
“Even COVID clouds have silver linings,” it wrote on its website.
“Fewer hook-ups since lockdown has resulted in a huge reduction of HIV and other STIs. The chain is broken.”
56 Dean Street says an increase in testing could help them ‘beat HIV’.
56 Dean Street said that an increase in testing now could help to “keep transmissions down and beat HIV”.
“We may never get this chance again,” the organisation continued, explaining that the coronavirus pandemic has presented a “once-in-a-generation opportunity in the fight against HIV”.
They said transmission of the virus has “dropped dramatically” in the last few weeks because “there are less people having sex in London”.
“What’s more, when someone first catches the virus, they are super infectious and more likely to pass on HIV than normal,” it continued.
“But because there aren’t many super infectious people around, this has reduced transmission even further.”
Transmission of the virus could remain low after the pandemic if testing is increased.
The clinic says if everyone gets tested during lockdown and knows their status, transmission could be kept at this low rate after the pandemic has come to a close.
Those who test positive during lockdown can start taking medication straight away, which if taken properly would make it impossible for them to pass it on to others through condomless sex.
Matthew, 30, keeps an emergency stockpile of his life-saving HIV medication at his home in Sacramento, California. He started building his stash shortly after he was diagnosed six years ago, on the recommendation of people he met through a forum for those living with HIV. Without his once-a-day pill, his viral load would increase and his general health would decline.
Now, over a month after the World Health Organization declared the coronavirus a global pandemic, Matthew hasn’t broken into his stash. But, like many of the 1.1 million HIV-positive people in the United States, he has questions about how the ongoing crisis could affect his access to medication and his chances of contracting the coronavirus, and whether his chronic immune condition could put him at a higher risk of complications due to COVID-19, the disease caused by coronavirus.
“Being positive, it puts it at the forefront of your mind,” Matthew, who requested that his last name not be used to protect his medical privacy, told NBC News. “You have to be present and aware.”
CDC’s recommendations for HIV and COVID-19
There is currently “no specific information” about the risk of COVID-19 in those living with HIV, according to the Centers for Disease Control and Prevention. However, the CDC noted that HIV-positive people who are not receiving treatment (antiretroviral therapy) or still have a weakened immune system despite treatment are at greater risk of “getting very sick,” should they contract the coronavirus. According to a 2017 CDC report, approximately half of HIV-positive Americans do not have the virus under control and would fall into this higher-risk category.
To prevent sickness, the CDC recommends HIV-positive individuals avoid exposure to the virus by using everyday preventive measureslike social distancing and frequent hand washing; maintain a healthy lifestyle by eating right, getting at least eight hours of sleep and reducing stress; and continue HIV treatment.
In addition to what’s recommended for all Americans amid the coronavirus pandemic, the CDC advises those with HIV to have at least a 30-day supply of HIV medicine and any other supplies needed for managing HIV; make sure vaccinations are up-to-date; establish a remote clinical care plan; and maintain a remote social network to stay mentally healthy.
Impact of age, comorbidities and poverty
Dr. Robbie Goldstein, an infectious disease specialist at Massachusetts General Hospital and director of its Transgender Health Program, said the coronavirus is most likely to affect the HIV-positive population through secondary conditions, such as homelessness, incarceration, old age and underlying health problems.
“What I say to my patients is, if you’re taking your medications and your CD4 count is greater than 200, for right now, we believe that it is not your immune system that is going to increase your risk of acquiring COVID,” Goldstein said. “That said, many of my patients and many patients living with HIV have other issues that they’re facing that put them at really high risk.”
One of those issues, according to Goldstein, is age. The CDC has warned that older adults “seem to be at higher risk for developing more serious complications from coronavirus,” with 8 out of 10 people reported dying from COVID-19 complications in the U.S. being 65 and older.
Individuals living with HIV are disproportionately older than the general U.S. population, according to the CDC: While approximately 35 percent of the U.S. population is over 50, nearly half of HIV-positive people are.
Beyond the physical health risks, older people living with HIV are also more likely to experience negative psychological effects as a result of the pandemic, according to Goldstein, who sees HIV-positive patients at his clinic twice a week.
“These are people who watched as all of their young friends died around them” during the AIDS crisis, he said, “and they are once again watching as young people around this country die.”
“We also have to remember that these folks who are now in their 60s and 70s and in some cases in their 80s … are living a life with very few other people around them,” Goldstein said. “They don’t have the same family structure that many other people in their 70s and 80s have. They don’t have kids and friends and partners and parents who can help support them through this.”
People of any age who have “serious underlying medical conditions might be at higher risk for severe illness from COVID-19,” according to the CDC. In its guidance, the CDC specifically mentions chronic lung disease, asthma, serious heart conditions, diabetes, liver disease and severe obesity, among other conditions.
While HIV-positive people who start their medication soon after contracting the virus have about the same life expectancy as the general U.S. population, people with long-lasting infection are still more likely to experience additional health problems later in life, according to Stephen Helmke, a geriatric cardiology researcher at Columbia University who has been living with HIV for 34 years.
For example, HIV-positive people are at least 1.5 times more at risk for heart disease and stroke than the general population, according to the American Heart Association. Helmke said this is often a result of the chronic inflammation HIV causes, specifically for people who began their treatment with less effective drugs. Additionally, those living with HIV are more likely to suffer from liver damage, often because of their medication, and are more at risk for additional infections, like hepatitis and tuberculosis.
After recovering from a mild case of COVID-19, Helmke, 56, said he now has a deeper awareness of how dangerous the virus can be for those who have serious underlying conditions, including untreated HIV.
“There are deaths that are directly able to be tied to lung function, and then there’s folks whose lungs are still at the level of functionality, but their heart is not able to deal with the loss of optimal oxygenation,” Helmke said.
Dr. Revery Barnes, a physician specializing in HIV for Los Angeles County, said her main focus for her HIV patients, many of whom are homeless or in poverty, has been ensuring they have access to their medication, as well as food and housing.
While HIV drugs have remained in stock in the United States thus far, Barnes said she is navigating other barriers, like the skyrocketingunemployment rate, that might prevent her patients from accessing and taking their medicine.
“Poverty has been a huge pandemic going on for a long time,” Barnes said. “When you actually get down to the barriers to people taking their medications, so much of it has to do with the fact that they’re spending all of their time trying to find money, or trying to find housing.”
HIV also disproportionately affects incarcerated populations, which have infection rates three to five times higher than the general population, according to a 2013 report from the National Minority AIDS Council. According to the report, “as many as half” of all HIV-positive inmates released from correctional facilities each year have no home to return to.
Goldstein, the physician from Massachusetts, added that factors like homelessness and incarceration have an inherent physical risk when it comes to suppressing a contagious disease like COVID-19.
“The thing that is unique about all of those people … is the fact that they live in high density settings,” Goldstein said. “It’s really easy to social distance when you live alone in an apartment in New York City. It’s very hard to social distance when you live in a shelter in Boston.”
Surviving a pandemic
Two federal assistance programs for people living with HIV — the Ryan White HIV/AIDS Program and Housing Opportunities for Persons With AIDS — will see millions in additional funding from the$2 trillion stimulus package that was signed into law on March 27.
Jeremiah Johnson, the HIV project director for Treatment Action Group, an HIV/AIDS advocacy organization, called the funds, which total $155 million, “incredibly welcome,” but he said it is crucial for advocates to keep track of how that money is ultimately used and ensure that it’s enough to help those living with HIV weather this storm.
“I think it’s incumbent on us to really start to sit down and do the math as a community,” he said. “We have a lot of landscaping to do in order to understand if this is even close to what we need to take care of these very vulnerable communities.”
Amid this latest public health crisis, Johnson also stressed the importance of keeping focused on the “ultimate end goal of trying to reign in HIV as an epidemic.”
Echoing the CDC’s guidance, Goldstein said it’s important for those living with HIV to establish a strong virtual support network to combat loneliness as they self-isolate during the mitigation phase of the pandemic. Barnes stressed the importance of keeping up with one’s health status — in terms of HIV and beyond.
“Because you know, somebody who’s diabetic and doesn’t know it is also immune compromised,” Barnes said.
Johnson, a longtime HIV activist who has lived with the virus for over a decade, said he sees a silver lining for people living with HIV and other chronic conditions, who are accustomed to navigating health care obstacles.
“I’m incredibly resilient, and I think that that applies to many people living with HIV,” he said. “We’re actually better prepared than a lot of people to deal with this current reality.”
The study’s authors found that transgender and nonbinary youth often lack access to critical support systems to educate them about safer sex practices. The research team conducted three-day focus groups with 30 young people ages 13 to 24 and found that respondents widely lacked “affirmative and culturally competent” resources to understand their sexual health needs.
These resources ranged from a lack of LGBTQ-inclusive sexual education courses to parents who did not affirm the respondent’s gender identity when discussing topics related to sexual and romantic intimacy.
“Youth really need adults to be there for them, to meet their needs, and to be open and respectful of them,” the lead author, Holly Fontenot, a professor at the Boston College School of Nursing, told NBC News. “If youth had adult caregivers, teachers or health care providers that could provide that affirmation, they feel supported and then they might have better overall health outcomes.”
Written by researchers from the Fenway Institute, the University of Chicago, the Centers for Disease Control and Prevention and Boston College, the study notes that trans and nonbinary youth are less likely than their peers to engage in safe sex practices. According to researchers, this group is more “likely than cisgender youth to report first sexual intercourse before age 13 years, intercourse with four or more partners, drinking alcohol or using drugs before intercourse, and not using a condom at last intercourse.”
Fontenot said the research found that one of the roots of these disparities is a widespread feeling among trans and nonbinary youth that they are “isolated and left out of the conversation” about sexual health in classrooms and at home. One participant in the study admitted that they “really don’t know what counts as sex,” because the definition they had been given from parents and educators “is very heteronormative” and “doesn’t apply to LGBT people.”
“When they do ask for help, youth might feel stigmatized, diminished or have negative experiences with the adults in their lives instead of ones that affirm who they are and tell them that they’re loved and supported,” Fontenot said.
Others said they had no one to turn to — even in their own peer group — for advice that’s inclusive of their gender identities. “I don’t really get any support, but I would like support in knowing that it’s OK to question who you want to have sex with, and it’s OK to explore your body,” one member of the focus group is quoted as saying.
The lack of a support network left many of the trans and nonbinary young people surveyed without the basic skills to discuss intimacy and consent with their sexual and romantic partners. The majority of respondents described open communication with potential partners as “challenging,” and many said they struggled “with self-advocacy, particularly when negotiating sexual preferences with cisgender partners.”
“Participants noted that sex requires more communication when experiencing gender dysphoria, and inability to negotiate safe behaviors might lead to feeling ‘abused or taken advantage of,’” the study noted.
Fontenot said these responses show that it’s “really important” for adults to model healthy relationships for trans and nonbinary youth.
“If you’re already feeling different and afraid, then you’re really not going be able to advocate for yourself in terms of safer sex behaviors,” she said. “It goes to that affirmation and support for youth. If they feel they have inherent self-worth and that they’re a member of society that’s loved and respected just like any other person, then they’ll carry that into whatever romantic relationship they may form in the future.”
Sean Cahill, a co-author of the study and the director of health policy research at the Fenway Institute, an LGBTQ-focused research center, said these lessons apply not only to parents and teachers but also health care providers who work with trans and nonbinary young people.
“For example, school nurses can support youth in school but also work with community partners to develop educational resource lists for youth and their parents and guardians,” he said in a statement.
Fontenot said the study suggests several ways in which all adults can be better advocates for trans and nonbinary youth, whether in a professional or personal capacity. For instance, young people who participated in the focus groups expressed a desire for more “coaching and guidance around healthy communication,” and Fontenot encouraged parents to turn to LGBTQ advocacy organizations or resources geared toward LGBTQ youth if they aren’t sure how to have those conversations.
However, Fontenot acknowledged that the availability of “competent sexual health resources that are really medically informed and accurate” remains scarce online, which can be a major barrier to access in rural areas. Only 27 states and Washington, D.C., mandate both sex education and HIV education, according to the Guttmacher Institute, a sexual health research and policy nonprofit.
Five states — Texas, Oklahoma, Mississippi, Louisiana and Alabama — still have “no promo homo” laws on the books, which prohibit sex education and health teachers from discussing LGBTQ people in a positive light, if at all. (South Carolina, Arizona and Utah only recently had such laws repealed or struck down.)
“That’s an area that needs great improvement because I don’t think our country’s in a place where schools across the nation are going to be delivering inclusive sex education,” Fontenot said of LGBTQ-inclusive online sex ed resources. “We have to think about alternative venues to deliver comprehensive sex education that’s inclusive of multiple identities.”
Dr. Anthony Fauci said Tuesday the visibility LGBTQ people brought to themselves during the height of the HIV/AIDS epidemic helped change the tide for public perception.
Fauci made the remarks during the daily White House Coronavirus Task Force briefing when responding to COVID-19’s disproportionate impact on black Americans, saying the disease has “shed a light” on health disparities in the United States much like HIV/AIDS did with LGBTQ people.
“During that time, there was extraordinary stigma, particularly against the gay community,” Fauci said. “And it was only when the world realized how the gay community responded to this outbreak with incredible courage and dignity and strength and activism — I think that really changed some of the stigma against the gay community, very much so.”
As head of the National Institute of Allergy & Infectious Diseases, Fauci was responsible for developing medications to treat HIV/AIDS at the height of epidemic. His efforts resulted in drugs still used today, although that came after activism of groups like ACT UP pushing the U.S. government to release the medication.
The impact of HIV/AIDS on LGBTQ people, Fauci said, is similar to the impact COVID-19 is having on African-Americans.
“When you’re in the middle of a crisis, like we are now with the coronavirus, it really does have ultimately shine a very bright light on some of the real weaknesses and foibles in our society,” Fauci said.
State data on COVID-19 is beginning to reflect African-Americans suffer from the disease at a greater rate than others.
In Michigan, for example, 35 percent of all COVID-19 cases are black or African-American, as are 40 percent of all deceased cases, according to state data. But the black or African-American population makes up just 14.1 percent of Michigan’s population.
Fauci said COVID-19’s has a disproportionate impact on black people not because they’re getting infected more often, but because the population suffers from health disparities.
“When they do get infected, their underlying medical conditions — the diabetes, the hypertension, the obesity, the asthma — those are the kind of things that wind them up in the ICU and ultimately give them a higher death rate,” Fauci said.
Fauci concluded the COVID-19 epidemic “will end,” but when that happens “there will still be health disparities which we really do need to address in the African-American community.”
President Trump expressed indignation over the disproportionate impact COVID-19 is having on the black population.
“What’s happening is we’re trying to find out why is it that it’s three and four times,” Trump said, “Now, maybe that’s not going to be the final number, but why is it three or four times more so for the black community as opposed to other people. It doesn’t make sense, and I don’t like it.”
Trump said his administration would have statistics on COVID-19’s impact on black people in “probably two to three days.”
Asked by a reporter if that pattern of black people being disproportionately affected by COVID-19 will continue nationwide, Fauci hinted that was the case.
“I can’t be confident to predict patterns, but the underlying reason why that is happening doesn’t change from state to state,” Fauci said. “I expect that when African-Americans get infected, given the disproportionate disparity of the underlying conditions that lead to complications like the ones I mentioned, I expect that we will still see the pattern that when you loo at the proportion of people who get into serious trouble and die, again, it’s going to be disproportionate towards the African-Americans. I do expect.”
Fauci affirmed the federal government is now leading the charge in collecting information said it will be public in days or the coming week.
Although states are collecting information on the racial and ethnic identities of COVID-19 patients, they aren’t ascertaining whether patients are LGBTQ. The lack of information has angered LGBTQ advocates, who are calling for greater data collection because LGBTQ are vulnerable to COVID-19.
Organizers of the 2020 International AIDS Conference on Friday announced the event will be held virtually because of the coronavirus.
The conference was scheduled to take place in San Francisco and Oakland, Calif., from July 6-10. International AIDS Society President Anton Pozniak and the conference’s two U.S. co-chairs, Cynthia Carey-Grant and Monica Gandhi, in a statement said the virtual conference “will enable delegates to access and engage with the latest HIV science, advocacy and knowledge traditionally presented at the conference.”
“It will be a compelling combination of virtual sessions and community networking, including exhibitions, workshops, the Global Village, satellites and pre-conferences that will reach audiences around the world,” reads the statement.
The statement notes people with HIV are likely at heightened risk for coronavirus. Organizers also said the decision to make the conference virtual “was informed by advice from the World Health Organization, UNAIDS, leading global and local health authorities, and people living with HIV around the globe.”
“We are acutely aware that there is not yet sufficient data on whether people living with HIV are more susceptible to COVID-19 or more likely to develop severe disease,” reads the statement. “Therefore, we have a special obligation to reduce any potential risk to the HIV community.”
“Furthermore, many of those who were planning to attend are now working on the front lines in the response to COVID-19 around the world,” it adds. “We have a responsibility to not put any of these individuals — or their home communities — at risk, nor redirect their efforts at a critical time in the response to the pandemic.”
The 20112 International AIDS Conference took place in D.C.
Statistics from Johns Hopkins University of Medicine indicate there are 94,238 confirmed coronavirus cases and 1,438 deaths from the disease in the U.S.
Doctors in New York and California have diagnosed among homosexual men 41 cases of a rare and often rapidly fatal form of cancer,” the article began. “Eight of the victims died less than 24 months after the diagnosis was made.”
Chris Bartlett was 15 when the article was published.
“Between 1981 and 1995, when the first effective treatments came out … there was quite a bit of uncertainty,” Bartlett, now 53, told NBC News. “Would I become HIV-positive? Would I live? Would I survive? And I really didn’t have answers to that.”
Today, amid the global coronavirus pandemic, HIV health experts, survivors and longtime activists, like Bartlett are reflecting on the early — and undeniably dark — days of the AIDS crisis. Several of them spoke with NBC News about the parallels between the onset of the two public health outbreaks and what lessons learned four decades ago can help us now.
Denial can be deadly
HIV and the coronavirus are very different viruses in terms of contagion and lethality. However, in both cases, early decisions made by government officials and members of the public affected how the outbreaks became global pandemics.
One example of this, according to Cleve Jones, a longtime HIV and LGBTQ activist, was the cavalier attitude displayed by individualsduring the earliest days of both crises toward their chances of contracting the virus.
Cleve Jones speaks during the National Equality March at the Captiol Building on Oct. 11, 2009 in Washington.Bruce Glikas / FilmMagic
Jones, a close associate of gay icon Harvey Milk before Milk’s assassination in 1978, stressed “how very difficult it was” at first to tell other young gay men in San Francisco that there was a deadly virus spreading in their community and that “we had to change our behavior.”
“It was not welcome at all,” Jones told NBC News. “I had people spit on me.”
That early refusal to properly reckon with the risk of contracting a new virus is also what stood out to Dr. Howard Grossman, a gay physician currently working in Wilton Manors, Florida, who served his medical residency at a public hospital in New York City when HIV first broke out.
“At first it was, ‘Oh, I don’t do poppers, so I’m not going to get this,’ and, ‘No, I don’t do sex clubs, so I’m not going to get this,’” Grossman recalled.
“This was always an epidemic that was happening to ‘other people,’” Grossman said. “People didn’t have a sense of personal danger for most of the epidemic.”
Examples of cavalier attitudes toward contracting COVID-19 were — and still are — aplenty. Rep. Matt Gaetz, R-Fla., jokingly wore a gas mask to the floor of the U.S. House on March 4, days before a close brush with a coronavirus patient in a Walmart parking lotled him to self-quarantine. On March 13, days before New York City ordered bars to close, they were packed shoulder-to-shoulder with revelers ignoring advice to voluntarily stay indoors. And just this week, as governors banned public gatherings in California and New York, Florida beaches were packed with young people enjoying their spring break.
Be wary of misinformation
In the early days of both outbreaks, the refusal of at-risk individuals to acknowledge their risk was due, at least in part, to government officials downplaying the severity of the situation, according to Grossman.
In October 1982, when hundreds of Americans had already died from AIDS, a journalist asked President Ronald Reagan’s press secretary, Larry Speakes, to comment on the mysterious illness: “It’s known as gay plague,” the reporter said.
“I don’t have it. Do you?” the press secretary snapped back, as the briefing room erupted in laughter.
It wasn’t until the late ‘80s before Reagan himself fully turned his focus to AIDS, which by then had taken the lives of tens of thousands of Americans. “After all, when it comes to preventing AIDS, don’t medicine and morality teach the same lessons?” Reagan asked in 1987, advocating for abstinence.
“Thanks to the president and Fox News, it’s been a similar thing: ‘It’s going to be overblown. It’s just going to be a few old people,’” Grossman said of the early response to the coronavirus.
On March 4, Trump appeared on Sean Hannity’s Fox News program and claimed that the World Health Organization’s COVID-19 death rate — an ever changing figure derived by dividing the number of confirmed deaths by the number of confirmed cases — was “ “false,” citing a “hunch” he had.
And a memo sent two weeks ago by the Trump campaign said the “media’s obsession with weaponizing the coronavirus against President Trump remains at pandemic levels.”
But by last week, the president had changed his tune. NBC News has reported that the administration’s initial response to the outbreak was “a story of missed opportunities, mismanagement and a president who resisted the advice of experts urging a more aggressive response.”
Perry Halkitis, dean of the Rutgers School of Public Health, said similar misinformation circulated early in the AIDS epidemic, with certain populations believing that the virus was a CIA conspiracy or that it could could only infect gay men.
Gil Neary, 62, is a gay real estate broker living in New York City. He contracted HIV in 1987 and said his response to the COVID-19 outbreak has been visceral.
“Holy s—,” he recalled himself thinking upon first hearing about it. “It’s astonishing that we’ve gotten to the point that we’re at, especially considering it started halfway around the world.”
As with the early days of the AIDS crisis, Neary said he thinks “our leaders failed us in a big way,” and this time — as a man in his 60s living with a chronic immune condition in a densely populated city — he’s worried that he’s once again vulnerable.
“It’s very disconcerting, because you think, ‘Here we go again,’” he said.
Follow facts, not fear
Gay urban men, one of the first communities in which HIV/AIDS emerged before becoming a global pandemic, were among the first to receive scientific information that would help them modify their behavior based on facts, not fear. Thanks to community action, gay men were among the first to receive information about condoms reducing the transmission of HIV. The activist drag troupe Sisters of Perpetual Indulgence, for example, distributed safe-sex pamphlets in 1982, over a year before the virus was identified by the U.S. government.
AIDS activist Peter Staley in 2014. After contracting HIV in the mid-’80s, Staley quit his job as a Wall Street bond broker and has been a prominent advocate for testing and treatment ever since.Sean Black / Staley
Eventually, behavior modification caught on and helped slow the relentless spread of HIV among gay men.
“We got religious about that,” Peter Staley, a veteran HIV/AIDS activist, said of condom use during the HIV epidemic. “Assume the other person’s positive, assume you’re positive if you haven’t taken a test, and act accordingly.”
At first, many gay men resisted taking the HIV test because there were no treatments for AIDS and no legal protections for those who tested positive. But eventually, after activist groups like ACT UP and Treatment Action Group began to apply wider and more dramatic pressure on government agencies to enhance HIV privacy protections and scale up research spending, testing became more widespread, and the dynamics of how the virus spread began to come into view.
“Eventually we got to the point where we realized you had to really work at it to get it,” Ann Northrop, a lesbian and early ACT UP activist, said of contracting HIV.
Initially, people feared the virus could be airborne or spread through surfaces, like COVID-19. At first, even medical professionals were afraid to be in the same room as some who had the virus, but through the relentless pursuit of factual information, Northrop said she knew HIV was contracted primarily through sex and she was not at risk of contracting it through her activism.
Now, however, with limited and conflicting information about the coronavirus, Northrop said she feels that same “generalized anxiety” that struck many people, particularly gay men, in the early years of the AIDS epidemic.
“I, for the first time in my life as a journalist and complete news junky, am having to limit my news consumption,” Northrop, co-host of the weekly cable news program and podcast “GAY USA,” told NBC News.
Ann Northrop speaks at the dedication ceremony of the LGBTQ Rainbow Freedom Flag at The Stonewall National Monument on Oct. 11, 2017 in New York City.Erik McGregor / LightRocket via Getty Images file
While “safe sex” was at first the leading behavior modification to stem the spread of HIV (today, many also take PrEP for HIV prevention), “social distancing” is the recommended way to “bend the curve” of the COVID-19 pandemic.
“Man, people are just eyeing each other with such suspicion — and really making sure not to come in contact with each other,” Northrop said of a recent trip to a pharmacy in New York City, one of the areas hardest hit by the outbreak.
Brooklyn artist John Hanning, 57, knows the fear and anxiety that accompanies a new viral outbreak well. He was diagnosed with AIDS in 1995 and given six months to live.
“My doctor told me I needed to decide what I wanted to happen to my remains,” he said. “It hasn’t been easy, but now I’m undetectable, and I’m pretty healthy.”
Hanning, who was recently featured on the AIDS Memorial Instagram account sharing his story of survival, said an important lesson to take away from the early days of the AIDS crisis is to resist fear and stigma, especially fear and stigma directed toward others.
“We shouldn’t live in fear, and that’s something that happened during the AIDS crisis,” he said. “They were afraid of gay people, because of AIDS or HIV, and hopefully with this coronavirus, there won’t be that stigma.”
Amid this current pandemic, which originated in China, there have been multiple cases where Asian Americans have been targeted in the U.S. Last month, a 16-year-old Asian American student in Los Angeles County ended up in the hospital after he was beaten by peers who accused him of having COVID-19. On March 10, at leasttwo Asian American New Yorkers reported racist attacks: A 23-year-old woman said she was punched in the face and called anti-Asian slurs by another woman, and a 59-year-old man said he was kicked to the ground and called slurs.
Widespread anxiety and fear do not result in superior health outcomes, Halkitis stressed. What does, he added, is proper information and an atmosphere conducive to collecting that information.
During the height of the AIDS crisis, he explained, it took years before people had the proper information needed to protect themselves: information about their status, and information about how to use tools like condoms to make their social/sexual interactions safer.
“People were shooting in the dark, kind of like they’re shooting in the dark right now,” he said, referring to the lack of testing and information about the virus.
“There’s this huge emotional weight that surrounds this situation,” Halkitis said of the public’s attitude toward the pandemic. “We have to acknowledge that, and make it be safe for them to be willing to control this disease and make the right decisions.”
In the late ’80s, once it became easier, safer and more empowering to know one’s own HIV status, more people could take action to either prevent the spread or prevent themselves from becoming infected. That, too, could soon happen in the coronavirus outbreak, but not without the proper information about who has or has had the virus, Halkitis said.
Halkitis said if he had a “magic wand,” he’d test everyone today for coronavirus. “Send it with their census packet,” he added.
Chris Bartlett, left, and Dominic Piccirelli hold a stretcher carrying a fellow protester at an ACT UP “die in” protest outside Philadelphia’s City Hall in 1990.David Acosta
Maintain community — even if virtual
Chris Bartlett, now the executive director of the William Way LGBT Community Center in Philadelphia, said the most crucial lesson he learned as an HIV activist with ACT UP was “the importance of being in a community to settle my spirit in times when I felt anxious, disconnected, lonely and isolated.”
Even while practicing social distancing, Bartlett said connection is still possible — albeit a different type.
“One of my goals every day has been to get onto Facebook, Google chat and Skype to reach out and see people through the technology that’s offered to us to make a daily connection,” he said.
Through his decades of activism, it’s this “strong fabric of community interconnectedness” that he cherishes most.
“That gives me enough hope to get through today, without really being clear what’s going to happen tomorrow,” he said.
