A relatively unassuming French-Canadian flight attendant, Dugas was known in gay circles as a charming, international traveler whose sexual promiscuity was no secret. Today, Dugas is best known as "patient zero" for one of the deadliest and most feared epidemics the world has ever ncountered.
It was 25 years ago Monday that the Centers for Disease Control and Prevention released a report detailing how five homosexual men living in New York and California were diagnosed with pneumocystis carinii pneumonia, a rare lung infection, and showed signs of having Kaposi's sarcoma, a rare form of benign cancer that tends to occur in older people.
They and other early infected were labeled as having a "gay cancer," or GRID(gay-related immune deficiency), which created the first stigma associated with human immunodeficiency virus and Acquired Immune Deficiency Syndrome. HIV/AIDS quickly became a virus and disease that can affect anyone regardless of race, sex, age, religion or sexual orientation.
Although the story has been told numerous times, the message continues to get lost: HIV is an equal-opportunity infectious disease that knowsno boundaries. The perception that certain groups or people are immune to it is entirely false.
The face of AIDS is growing in alarming numbers in people of color, especially women of African and Hispanic decent.
The women and men featured in this story want to speak out on the issue, and several are active in educating strangers to the risks. However, most asked that their names be changed or first names used only in fear of what those close to them may say and in some cases, may learn.
As we creep toward the one million mark of lives claimed by AIDS in the United States and exceed 20 million worldwide, the disease shows no signs of slowing down.
Because the message keeps getting lost.
And the stigma won't go away.
changing face of AIDS
There is much debate as to where and when AIDS began. There are signs that link its birth to the African continent, but it wasn't until the rapid growth in the white, gay male community in the early 1980s that America took notice. Today, the United States ranks third in infected cases.
Of the 40.3 million people living with HIV/AIDS globally, Asia is second with 8.3 million cases. However, what experts consider the most alarming number is the 25 million currently living with HIV/AIDS in Sub-Saharan Africa.
Nationally, African Americans and Hispanics constitute 68 percent of the AIDS cases reported to the CDC since the epidemic began in 1981.
According to the California AIDS Survelliance Report, as of March 2006 there were more than 140,000 cumulative AIDS cases, resulting in almost 82,000 deaths. In terms of ethnic groups, whites still lead with 79,000 reported cases, African Americans follow with about 25,000 and at a distant third, Asian/Pacific Islanders report about 3,000 cases.
Although male-to-male sexual contact is a major factor in the spread of HIV, it is injected drug use in minority communities. Other factors contributing to the spread of HIV/AIDS in these communities include men who have sex with men, often passing the disease on to their mates, and at an increasing rate, heterosexual transmission.
Long-term survivors are becoming the norm. They watch their health, they do their jobs, they live their lives.
They are like you and me.
zabeth, 45, Hispanic, straight female
"I was really stunned. I wasn't emotionally prepared for the outcome," says Elizabeth, remembering back to the day she sat in the doctor's office and was told she was HIV positive.
"I remember feeling a heated sensation from the bottom of my feet all the way to the top of my head. This warmth came into me and pulled at my stomach. It hit me, it shocked me... it shocked the hell out of me."
The 45-year-old Oakland native had been widowed a few years earlier and admits to "sowing her oats" in the years that followed her husband's death. It was the early 1990s and she didn't consider herself at risk because AIDS was "the gay man disease."
"I didn't have an understanding or much desire to learn about the disease," says the Latina, who had two young children at the time. It wasn't until one of the men she dated died and she was treated unsuccessfully for mononucleosis that she began to think it might be more. A simple test in 1996 gave her the answer she needed.
Elizabeth said she had her own stereotypes about the disease due to lack of education, but sharing her news with her family and having gone through the grieving process following her husband's death helped her realize she wanted to live with the disease, not die from it.
"I see it as a very misunderstood disease. When you're on the outside you don't have to look in," says Elizabeth, who has maintained her HIV status for 10 years. "When you're on the outside, you can choose to label people and see people in certain ways until it affects you in some way.
"It doesn't have to be your family member or friend who has it, but it has to affect you in some way that it touches your heart. Then you can be more considerate."
Bien, 57, Filipino, gay male
Seventeen years ago, Bien immigrated to Southern California from the Philippines.
He comes from a large, close family, but lived most of his adult life in the closet. Today only one sister knows he is HIV positive.
"For them, being honest is a crime," Bien says of his Catholic family.
The 57-year-old was tested every year, but it wasn't until he had a stroke that he learned he was HIV positive.
"How do I tell it to my family and my friends?" he remembers thinking. "I was so devastated; my self-esteem was so low, low, low on the ground."
Along with dealing with the news, he had to handle losing his job and maintaining medical care. He was on the brink of doing something "bad to myself" when he learned of a wellness center in San Francisco.
He began as a client, but quickly wanted to do more to educate the community, especially Asians. He enjoys reaching out to others, but still must keep quiet in some areas of his life due to the AIDS stigma.
"Being gay and being single, I have lonely nights, I have stress too and I want to share my love with someone."
Bien says he wishes people would at least listen to the message and not write it off as if it could never happen to them, as if they are superhuman.
"HIV is here to stay," says Bien. "We don't know when the vaccine will come out so get educated. I know you don't have it, but don't shut the door on people who are infected. People need your support and understanding."
His wish: "To live longer, be part of the community and for people to treat me like a human being, not a leper."
It was Friday, June 5, 1981.
Dr. Anthony S. Fauci remembers sitting in his office at the National Institute of Allergy and Infectious Diseases reading the Morbidity and Mortality report published weekly by the CDC in Atlanta.
"I was a little bit alarmed," says Fauci about the report highlighting five young, gay men who were treated for biopsy-confirmed pneumocystis carinii pneumonia at three different hospitals in Los Angeles. Two of the men died. It was the July 4 report from the CDC, however, that caused him to take action.
"It really caught my attention," says Fauci who is now the director of the Baltimore-based NIAID. This report stated that the government agency had no concrete answers as to what was causing the outbreak of PCP and Kaposi's sarcoma. "I had that fear that we were dealing with a new disease."
In fall 1981, Fauci put together a team to study the new phenomenon, the virus that the world would soon come to know as HIV, the virus that causes AIDS.
"I knew it was going to go beyond the epidemiological confines of the gay community - I don't think anyone imagined it would be one of the most devastating epidemics in world history."
Fauci put all his attention into first determining what the disease was and how and why it was spreading. His work turned into a 25-year crusade to help find a cure. And he isn't alone.
In the Bay Area, people like Dr. Lisha Wilson and John Manzon-Santos are doing what they can to bring attention to the disease.
From her offices in Oakland and San Francisco, Wilson works to make sure local residents, especially African-American women, one of the fastest growing groups contracting the disease, are getting the education and help they need to live with AIDS.
"There is a misperception by people who don't work in the field of HIV that it's not a big health issue anymore," says Wilson, medical director of the AIDS Health Foundation's Oakland Magic Johnson Clinic. "It is particularly a problem with people of color."
As of 2003, the CDC reports about 1.2 million people in the United States were living with HIV/AIDS. In 2004, African Americans accounted for half of the estimated diagnosed HIV/AIDS cases. Hispanics follow at 18 percent and American Indian/Alaskan Natives are at one percent.
Although the Asain/Pacific Islander community (API) also reflects only one percent of the diagnosed cases, they represent about four percent of the U.S. population; their numbers are quickly growing in cities like San Francisco, said Manzon-Santos.
"The thing about the Asian and Pacific Islander community is it hasn't changed, we've always been there," Manzon-Santos says. "But because of how the public health system and the media framed it at first and who got the visibility and not illegitimately, it focused on the white gay community.
"Maybe we are coming out of the shadows a bit, but we've always been there."
As executive director of the Asian and Pacific Islander Wellness Center in San Francisco's Tenderloin district, Manzon-Santos makes sure his organization provides primary care, psychiatric, case management, peer advocacy, acupuncture and more in 20 different languages to those who seek help from the center. He also wants to eliminate the "silence and shame" that is a part of the API community, as well as all communities of color.
"It's one thing to provide services, but there is tremendous stigma around HIV. We can't provide services if we're not fighting stigma," he says. "And what that means is being visible, talking about it, getting our religious leaders, our church leaders, our community leaders, our movie stars, everyone has to be talking about it.
"We need people to not only come out about their HIV, but the people around the people who are positive to come out that they have someone in their life who is positive."
"People are still doing it (engaging in unprotected sex) because people think it doesn't pose a risk to them" she says.
Wilson also says people aren't seeing enough infected "real faces" spreading the message.
"I think when celebrities come out it's so courageous, but I don't know if people really identify with them," says Wilson, stressing it will take neighbors, colleagues, family and friends, "more positive people to come forward and admit they're positive" to create change.
Working toward change
Sylvia Britt-Raven wakes up each morning knowing she has AIDS and isn't afraid to let others know about it.
The San Francisco native was diagnosed in 2003 while hospitalized for pneumonia. A recovering crack addict, Britt-Raven knew she probably was infected while using, but thought when told she was positive that it would be handled more professionally.
She says the devastation she felt when a doctor's assistant told her the news without explaining what steps she needed to take to get emotional and medical help is something she will never forget. Fortunately, her drug recovery process supplied her with a strong support base and family, friends and church members rallied around her.
Her experiences, good and bad, are why she speaks out today.
"The reason I'm still here (is) I like to inspire women," says Britt-Raven about her life and work at WORLD - Women Organized to Respond to Life-Threatening Diseases. "To know they don't have to be in the closet, they don't have to be afraid to let anyone know they're not by themeselves, they aren't going to die necessarily - it's not a gay, white disease."
Although she travels the continent to educate others and learn more about the disease herself, Britt-Raven still faces the reality of her disease.
Every three months she visits Dr. Sally Slome and the women who run the Kaiser Permanente Oakland Medical Center HIV Women's Clinic. The clinic, the only Kaiser facility in Northern California offering these services, provides HIV speciality care, primary medical care, OB/GYN nutrional counseling and has reduced the rate of babies born HIV-positive. It also provides a welcoming atmosphere, after-work hours, dinner and group sessions.
"Education is not enough," says Slome. "It's empowering them to want to protect themselves."
When asked if she thinks her patients will live to see a cure for AIDS, Slome says she's not so sure about a cure, but believes the disease will become a chronic treatable illness that is still more than five years away. So in the meantime, she wants to make sure their lives are as normal as possible.
"Many of our women patients have never told anyone," says Slome. "It's hard living this dual life where you raise your kids, go to family picnics, take your meds and go to your doctor appointments."
Britt-Raven says her life is filled with women and men like this, and although she understands why they won't speak out, she wishes they would understand that the real faces behind AIDS need to be seen before the stigma will go away. She also hopes that churches, like those in her African-American community, will lend a hand to the fight.
"There are thousands and thousands people in these congregations that can be getting educated and we can nip this thing in the bud, but as long as they keep not wanting to talk about it, it's not gonna happen," says Britt-Raven. "But I'm gonna keep talking about it."
Michelle Fitzhugh-Craig can be reached at (925) 416-4817 or at firstname.lastname@example.org.