Sylvia Youngâ€™s face may be familiar to anyone who has recently taken public transportation in the Bay Area. In 2006, to commemorate World AIDS Day (Dec. 1), she posed with four other HIV-positive women (of varying ages and races) for a public service poster. The image, which was installed in countless trains in the Bay Area Rapid Transit subway system, reads: â€œWe are the faces of women living with HIV or AIDS. We are your sisters, daughters, mothers and grandmothers. We are your community.â€
For Young, the decision to be open about her HIV status was not difficult. Since 1995, the 53-year-old has built her career around coping with the devastation that an HIV-positive diagnosis brings. As a peer advocate for Women Organized to Respond to Life Threatening Diseases (WORLD), Youngâ€™s sympathy to other positive women dates back to the moment she learned that she was HIV positive. She remembers the day, weeks after a procedure to have her tubes tied, that her doctor asked her to return to have her scars checked.
â€œI thought it was odd,â€ she says. â€œI didn’t have any scars.â€
The pretense got her into the clinic, but hardly prepared her for the results of the HIV test she barely remembered taking.
â€œI cried. I thought about my daughter. She was 11 at the time,â€ Young says.
It was a cruel twist for a woman who had been so carefully restructuring her life. Young had left an abusive relationship and an atmosphere of domestic violence to give her child a more stable home and to pursue a degree in teaching from the University of California at Berkeley. She and her boyfriend had practiced protected sex for the first six months of her new relationship.
â€œ[When I found out I had HIV] I thought I was going to die,â€ she says. â€œI went home and had to go tell my partner. I picked him up and weâ€™re crossing the Bay Bridge coming home. Iâ€™m driving and Iâ€™m crying and heâ€™s telling me, â€˜I guess weâ€™ll be together forever.â€™ â€
Her boyfriendâ€™s lack of surprise, as well as his sardonic assessment of their future together, made Young suspicious.
â€œI sensed that he already knew,â€ she says softly. (She later found out that her boyfriend was a needle user.) Still, they didnâ€™t break up for a year and a half because Young thought â€œthat nobody would want me.â€ In the mean time, she began a solid drug regimen to keep herself alive. She begun to teach, then quit when the fatigue set in. And she told her daughter about the diagnosis.
â€œAt the time, [my daughterâ€™s] dad had been diagnosed with cancer a few years before. I had to tell her because it was taken for granted that people who became positive [with HIV] were going to go to the hospital. She goes, â€˜Well I guess everybodyâ€™s dying.â€™ I said, â€˜Iâ€™m not going anywhere.â€™ â€
AIDS then and now
Nearly 26 years after it was first officially recognized HIV and AIDS now cease to horrify us. It has been nearly 16 years since Magic Johnson went public with his HIV status; 13 years since Pedro Zamora (from MTVâ€™s The Real World series) lived his battle on camera; and 14 years since the brilliant TV film And the Band Played On enlisted our favorite stars of screens large and small to depict the slow, devastating history of public response to HIV/AIDS. But what was once a cutting-edge topic in popular culture has been relegated to the occasional magazine retrospective, as though Americans only openly acknowledge the disease on notable anniversaries.
The AIDS discussion has largely shifted to third world countries. In a Google search of English-language news articles concerning HIV and AIDS at time of publication, only ten percent of the first 20 results addressed HIV and AIDS in the United States. Of those, one was a reminder that Feb. 7 is National Black AIDS Day, and one criticized the president’s brief mention of HIV and AIDS in his 2007 State of the Union Address. (He touched on the subject only in relation to the epidemic overseas.)
Proof of how much things have changed can be seen by looking at the May 15, 2006 cover photo of Newsweek. The image offers a new illustration of HIV and AIDS. Jennifer Jako, a nine-year HIV survivor, sports a red dress, the emblematic color of the AIDS battle. Staring down the camera with a world-weary yet defiant expression, her image defies the magazineâ€™s banner: â€œAIDS at 25.â€ Jako is heavily pregnant. The thought of an HIV-positive woman being able to have a normal life, much less have a baby, was inconceivable 25 years ago.
With powerful new treatments such as highly active anti-retroviral therapy (drug regimens that inhibit the HIV life-cycle), an HIV diagnosis is no longer considered a definite death sentence. So are Americans simply on top of prevention now? Is there no need to focus resources on this issue in the U.S.? Statistics within Ventura County underscore the fact that the epidemic is still just that.
AIDS and HIV in Ventura County
Martin A. Perrier, director of social services for the Ventura County Rainbow Alliance (a non-profit resource center for the gay, lesbian, bisexual and transgender population and for those with HIV and AIDS ), reports that a few of his clients have been living with this condition for a quarter of a century. But Perrier also reports that, each year, 400,000 people in the U.S. contract the virus that can lead to AIDS. Although receiving a diagnosis now is far less dire than it would have been 20 years ago (available treatments have become more accessible and simplified in recent years), Perrier bristles when HIV is referred to as \”manageable.\”
â€œOne of the things weâ€™re seeing,â€ says Perrier, â€œis not so much the classic, opportunistic illnesses, not lesions, pneumonia. Weâ€™re seeing elevated cholesterol, compromised liver function, pancreatitis â€“ some of the side effects of medication. Weâ€™re seeing other things that need to be treated.â€
According to Lynn Bartosh of Ventura County Public Health, there have been 444 cases of HIV reported in the county since July 1, 2002, when data was first collected. There have been a total of nine HIV-related deaths in the county.
Nearly two percent those with HIV are children. Off the HIV-positive adults in this county, men make up 76 percent of the cases, women 24 percent.
In the past year, 10 more HIV cases were reported.
In total, there have been 1,031 cases of full-blown AIDS recorded (which include the above numbers of HIV cases) in Ventura County. 568 people (55 percent) have died of AIDS-related complications since 2002.
The HIV-positive population of Ventura County has no stauncher an ally than Perrier. After eight years in the field, he talks about the condition and defends his clients with passion and outrage.
Although devoted to improving the quality of life for those affected by the epidemic, Perrier does not sugar-coat the condition. His work at the Rainbow Alliance brings him into contact with many who have just received a positive HIV diagnosis.
â€œThere have been times where Iâ€™ve had to not only tell someone, â€˜Youâ€™re HIV positive and your life has changed,â€™ but Iâ€™ve also been the linkage to resources,â€™ â€ he says. â€œWhen a client comes to me for intake, the first referral is to Lynne [Okun] for mental health services.â€
Therapist Okun agrees that the approach is akin to grief counseling. â€œMost people,â€ she says, â€œare dealing with what theyâ€™ve lost.â€
Okun and Perrier describe the ongoing battle to fight apathy about the disease and the startling ways that activists have had to redirect their energies. Instead of targeting the HIV-negative population, educational outreach is increasingly aimed at those who are already positive.
â€œWe call it â€˜prevention with positives,â€™ â€ says Okun. She then supplies this harrowing fact: â€œ50 percent of those spreading [HIV] know they have it.â€
In the midst of such depressing numbers, Perrier now sees clients with the closest thing to good news an HIV-positive person can get: an â€œundetectableâ€ designation. (Undetectable simply means that the number of viral copies in a milliliter of blood is below 500.)
â€œThe myth is that there is no virus in their system,â€ Perrier says. â€œ[But] once youâ€™re infected, you can never completely get rid of it. Weâ€™re dealing with what present technology can now measure; viral load, human immuno-deficiency virus; it stays in you.â€
But he brightens when he talks about clients who, like Jako on the Newsweek cover, were able to do what so recently seemed impossible.
â€œThe agency has a client,â€ he says, â€œand she and her husband recently carried a child to term. Two other clients were told by their doctor that if they are able to maintain an undetectable [status], they (with their HIV negative spouse) could have a baby.â€
â€œLife is not over,â€ Perrier says.
Working with HIV
Eventually, on the recommendation of her own peer advocate, Young trained to become a peer advocate and case manager for many other HIV-positive women through WORLD, an organization that was founded in 1991 by Rebecca Denison. Young said that Denison, a San Francisco woman, started WORLD after received a positive diagnosis and found only support groups for positive men (the only support groups then available).
â€œGay white men,â€ Young says.
In her own experience as a Native American, HIV-positive female, Young has found that racial and cultural issues define the experience as much as gender or sexual orientation. At an international AIDS conference in Toronto last August, Young witnessed a fiery address by an African American organization that condemned this countryâ€™s lethargic response to AIDS for â€œthe brown population.â€
According to the most recent data available from the Center for Disease Control (dating back to 2004), 27 percent of those afflicted with AIDS in the United States are female. Of the women currently living with AIDS in the U.S., 80 percent of them are â€œof color,â€ and of that group, 64 percent are African American.
But Young says there is a gender disconnect as well. She observes this not only in the general public, but also within the medical community. A doctor who she visited for the first time immediately assumed she had contracted the disease by being unfaithful to her husband.
â€œThe stigma of a [positive] woman is still that she has to have been messing around to get this disease when itâ€™s not true. The partners are bringing it into the homes,â€ says Young.
Young points out that the majority of positive men contracted HIV through sexual intercourse with other men. But the majority of women contracted it through heterosexual intercourse. The implication, Young says, is that there is an overlap between these two groups.
HIV and love
Despite her ex-boyfriendâ€™s pessimistic prediction of being forever united by an incurable disease, Young is now happily married to an HIV-negative man and they are looking forward to their ninth anniversary. Her husband is a high school administrator whom she describes as â€œkind. Just a kind-hearted man.â€
Three weeks after she met him at a party, Young sought advice on how to disclose her HIV-positive status to the man she was becoming increasingly serious about. â€œMy cousin said, ‘Go to a public place. If you tell him and he gets up and goes to the bathroom and doesnâ€™t come back, heâ€™s a real asshole.’ â€
But the conversation, to Young’s surprise, was an easy one. He said â€œok,â€ with such ease, that Young wondered if he’d known all along.
â€œHe proposed two months later,â€ she recalls.
â€œWe still have to use condoms, and we find other ways to play. We just have to be more creative,â€ Young explains. â€œAnd he understands. And even though we use condoms, he still gets tested.â€
Now living with an undetectable HIV status, she daily draws on her 11 years of living with this disease. Young says, â€œIâ€™m not going to let this overwhelm my mind. I did, at first, but I donâ€™t let HIV ride me. I ride it.â€