Team Reporting by the Dallas Voice Editorial Staff
It was 1981, and young gay men were beginning to die of diseases that they shouldn’t be getting, and that shouldn’t have been able to kill them, even if they did become infected.
By March that year, at least eight young gay men in New York had been diagnosed with Kaposi’s Sarcoma, a form of cancer that had always been relatively benign and that usually occurred in older people.
At the same time, young gay men on both coasts — in California and New York — were being diagnosed with a rare lung infection called Pneumocystis carinii pneumonia, or PCP. It was happening so frequently that in April, the Centers for Disease Control noticed the increase in PCP infections.
Gay men in the prime of their lives were getting sick. And they were dying. Quickly. No one knew why. And no one knew how the killer — whatever it was — was being transmitted.
BATTLING IGNORANCE | Dallas Mayor, Mike Rawlings, left, Dallas County HHS Director Zach Thompson, center, and County Judge Clay Jenkins spoke at an Oct. 2nd press conference about the Ebola patient Thomas Duncan. (David Taffet/Dallas Voice)
The mysterious and deadly syndrome was spreading quickly. So was the panic surrounding it.
Because all of those earliest victims were gay men, the affliction was labeled GRID — Gay-Related Immune Deficiency syndrome. Some called it the gay cancer. By July 1982, cases were beginning to show up in Haitians, in hemophiliacs, in drug users, and the name was changed to Acquired Immune Deficiency Syndrome, or AIDS.
But by then, the die had been cast: AIDS, in the public mind, was a disease that affected outcasts and miscreants — homosexuals and drug users, who contracted the disease through their own bad habits. They were to blame for their own illness, some insisted, others even suggesting they deserved it, that AIDS was God’s punishment for their sins.
The fear and the misinformation, fed by hyped up coverage by the media on “the gay plague” and a”killer blood” supply, began to spread even faster than AIDS. Police and paramedics wore rubber gloves when they interacted with someone in a “high risk group” for AIDS. There was talk of quarantines, and even doctors and nurses refused to treat AIDS patients for fear they would contract the disease themselves.
Even after scientists in France in 1983 and in the U.S. in 1984 discovered the virus that causes AIDS — the Human Immunodeficiency Virus, or HIV, which originated in Africa — the epidemic of fear continued.
That fear, fueled by bigotry, misinformation and willful ignorance, in turn fueled the spread of AIDS. Because, as some people went to extraordinary lengths to avoid people and situations they thought would put them at risk of contracting AIDS, their ignorance led them to stumble blissfully and blindly into situations where they really were at risk.
According to statistics published by the CDC, there were about 2.5 million new cases of HIV in 2011, and about 34.2 million people were living with HIV around the world.
More than 30 million people with AIDS are estimated to have died worldwide since the epidemic began. Many of those were victims of ignorance, fear and discrimination as much as a virus.
Today, another virus has sparked another epidemic of fear, misinformation and ignorance. And unless it is curtailed soon, the hysteria surrounding Ebola in the U.S. — with the only known case to be diagnosed in this country occurring here in Dallas — could lead to more needless, preventable deaths.
Deja vu
Local leaders who lived through the early days of HIV/AIDS epidemic have made it clear: the differences between HIV/AIDS and Ebola outweigh the similarities.
But the hysteria surrounding both, fueled by misinformation, is the same.
Don Maison, president and CEO of AIDS Services of Dallas, recalled how “Homeowners would find out they purchased a home after a resident died from AIDS. They would ask us to disinfect it.”
He said picketers were a daily feature outside of ASD’s original location. And for awhile, the mailman wouldn’t even deliver mail there.
It was difficult to let people know AIDS was not airborne when the public refused to listen to the facts. It took a few with courage to combat the stigma by dispelling misinformation — much as it will today with the Ebola outbreak.
Maison cites the efforts of Kay Wilkinson, an early volunteer with ASD, who confronted the United States Postal Service after learning residents were not getting their mail. After she raised hell with USPS, the mailman would deliver mail — but not without wearing rubber gloves and only after visiting every other stop on his route.
Labeling the disease GRID when LGBT people were already marginalized did nothing to help calm the hysteria or slow discrimination. But the Rev. Carol West, who was an AIDS chaplain then and is now pastor of Fort Worth’s Celebration Community Church, said misconceptions were not entirely rooted in homophobia.
Plainly put, she said, “People were afraid of becoming ill.”
Just as happened in the earlier days of AIDS, communities are being singled out and ostracized as fear of Ebola spreads. But the similarities end when it comes to the medical knowledge of the disease.
“We didn’t know anything about HIV/AIDS then,” Maison said. “And the government wasn’t helping. People know what’s going on now [with Ebola]. We have protocols in place and we know what causes it.”
Maison said that in dealing with Thomas Eric Duncan, the only person so far to have been diagnosed with Ebola in the U.S., Dallas’ medical and political leaders have been responsible, for the most part. But the media and the general public have been less reasonable.
Facts, Maison said, have yet to deter hysteria surrounding Ebola. He blames the public’s misconceptions on a complete ignorance of science, citing people who don’t get their kids vaccinated or those that don’t believe in evolution.
Given that there are protocols in place to fight Ebola, that local, national and international governmental bodies are responding, what’s left for the activist?
“[The activist] has to help eradicate the hysteria by fighting the misinformation,” said West.
It’s also harder now to isolate a certain group of people as the at-risk population than it was in the early days of the HIV/AIDS epidemic when gay and bisexual men were seen as the ones at risk. But even though one specific community can’t be marginalized based on rate of Ebola diagnoses, racist and nationalist rhetoric is still evident.
Dr. John Carlo, top, The Rev. Carol West, center, Don Maison, bottom.
That worries Curtis Smith, a counselor at the AIDS Outreach Center in Fort Worth and pastor of Trinity Metropolitan Community Church of Arlington and Grand Prairie.
Some U.S. leaders are calling for the country to close its borders, deport undocumented immigrants and limit flight travel between the United States and various West African countries.
Smith remembers the “damning language feeding the stigma” of AIDS. While it isn’t as clearly and viscerally evident now, he said he still sees hysteria triumphing over compassion.
“People are so hysterical they forget their compassion. For a Christian, the fear-mongering and lack of compassion run counter to Christ’s teachings,” Smith said. “They forget Christ touched a man with leprosy.”
Dr. Kent Brantly, the Fort Worth doctor who successfully overcame an Ebola diagnosis, was a Christian missionary. But within the Christian community, the response during the HIV/AIDS epidemic was not always so compassionate.
Maison said churches were among the first groups to volunteer at ASD, but he particularly cited West’s work with HIV/AIDS patients.
“She was the only one who would come in and hold patients’ hands,” he said.
Though ministering to those dying from AIDS was not Smith’s ministry, he remembers his own harrowing experience. A gay friend dying in a hospital sought Smith, an ordained minister, to reconcile his struggles with being gay and Christian.
He was one of the few who would visit his friend without gloves or protective suits. He would hug and pat his friend on the back. He would affirm him.
Smith said he doesn’t know whether any members of his church have performed medical missionary work like Brantly.
Dallas Voice reached out to Samaritan’s Purse, the Christian missionary organization that sent Dr. Brantly to Liberia. But a spokeswoman for Purse’s medical missionary program said the pivotal contact was already travelling back to Liberia and other countries devastated by Ebola.
Through the years, activists and ministers played a crucial role in caring for those dying of AIDS when government and community leaders turned their back on them. But Maison, West and Smith agreed that any role for the activists now — whether as medical missionaries or someone dispelling rumors about how the Ebola spreads — is different now, because the facts are available already. It just depends on whether the public accepts those facts.
Hysteria and the role of the media
AIDS Outreach Center Executive Director Shannon Hilgart was an intake coordinator in the 1990s, and she remembers seeing families using separate plates and cups for relatives with HIV, even after it was known that the virus couldn’t be transmitted through casual contact.
Hilgart also remembers not being able to convince people that HIV couldn’t be transmitted by mosquitoes. But the worst, she said, were the families who wouldn’t have anything to do with someone with HIV.
All of those things grew out of ignorance and misinformation. And that same sort of misinformation is now being spread about Ebola by media more interested in a scandalous story than a factual one.
In the days since news first broke that a man in Dallas had been diagnosed with Ebola, the hysteria in news coverage has been evident. Good Morning America began a broadcast with the declaration, “The city of Dallas is in a panic.” Reporters at a press conference by Dallas city and county officials obsessed what Dallas County Health and Human Services Director Zach Thompson wore when he went into the apartment where Duncan — who died Wednesday — was staying when he fell ill, and why
County Judge Clay Jenkins didn’t wear a protective hazmat suit when he drove Duncan’s family members to a new location to wait out a 22-day period of isolation to make sure they haven’t been infected.
Reporters at that press conference asked question intended to feed the hysteria rather than ascertain — and share — actual facts. In their news stories and broadcasts, they left out facts and focused on speculation and hyperbole.
Dallas Mayor Mike Rawlings noted angrily that members of the media have offered to pay other residents of the apartment complex where Duncan’s family lived, asking that reporters be allowed to move into those neighboring apartments in an effort to get as close to the family as possible before the family was moved to an undisclosed location for their own safety. The city of Dallas, in fact, issued a press statement asking the news media to back off because their overly aggressive tactics were beginning to alarm and frighten residents of the area.
AIDS Arms Executive Director John Carlo said he sees a link between the public and media response to HIV in the 1980s and 1990s and media response to Ebola today, and he said treatment of Ebola owes quite a bit to AIDS research.
“HIV expanded our knowledge on viruses,” he said. “That research taught us how the immune system works. We learned how viruses attach to cells.”
He also noted that the test used to do an HIV viral load count is the same technology used to test for Ebola.
Carlo said people who live in the neighborhood where Duncan stayed are being told by their employers to stay home from work, even if they had no contact with Duncan and don’t live in that apartment complex. And he noted that after Jenkins drove Duncan’s family to a new location without wearing protective gear, people have been cancelling speaking engagements they had previously arranged with the county judge.
“We can’t overcome the fears with the science,” Carlo said.
Carlo said it was important to understand how Ebola is spread, and how it isn’t spread, explaining that a person must “be symptomatic to be at risk to transmit.”
Those symptoms include fever, headache, fatigue and sore throat. As the disease progresses, the victim’s organs begin to be affected and bleeding disorders set in.
Officials have stressed that the virus is not spread through the air; there has to be direct contact between bodily fluid from an infected person and the eyes, nose, mouth or an open sore of another.
Someone directly handling an Ebola patient needs protection. Someone coming in contact with someone who came in contact with an Ebola patient does not.
The Ebola virus lives only a short time outside the body, maybe 24 hours at most, Carlo said, adding that ultraviolet rays do a good job of killing Ebola.
Like HIV, Ebola can be transmitted through semen or breast milk. So Ebola patients are told to refrain from sex or breast feeding for at least 40 days after recovering from the virus, a time frame during which Ebola can still be transmitted through semen or breast milk.
The incubation period for the Ebola virus is two to 21 days — much faster than the incubation period for HIV, which can take months or longer to manifest. But Carlo said most people who contract Ebola will get sick within eight to 10 days.
While Duncan’s family will remain under control orders for the full three weeks, Carlo said he’ll be breathing easier if none of the family members are showing any symptoms by the end of this weekend.
Carlo said he is most disturbed by how Thomas Duncan’s family is being treated.
“There’s not a lot of public sympathy for this family,” he said. “It’s like how people treated people with AIDS.”
Thompson said the family is being well cared for. Food is being delivered. The children are participating in school through a video connection. One of the kids wanted a new video game and Thompson said the county officials looking after them made sure he got it.
Officials from the Centers for Disease Control have been in Dallas tracing contacts. Initially, about 100 people were identified as having had contact with the immediate family. Thompson said with further investigation, that number was reduced to 48 people who had any contact that was of concern.
By the end of the week, he said, he expected that number to be about a dozen.
“Our concern is outbreak and it’s contained,” Thompson said. “Nobody’s walking around spreading Ebola.”
The trick now, though, is getting the media to spread that message, and getting the public to accept it. And that’s no easy task.
Dallas Voice Staff Writers David Taffet and James Russell and Managing Editor Tammye Nash contributed to this report.