“One life”: CHICAGO—HIV-AIDS public awareness

To many people, in our society, the understanding of HIV AIDS, as a disease, is limited to association with gay men and needle using drug addicts. It remains a disease where the victim is always at fault.

This uninformed but sadly ubiquitous view is dangerous to all. Any of us can become infected. We don’t have to be a gay male or an intravenous drug user. HIV does not choose to infect by assessing the sexual orientation of an individual. The virus finds a home wherever it is admitted. It can be comfortable in any human being.

So, what’s to be done? A start is to recognize who is at risk.

Sociologically we tend to identity people as members of groups. The question we need to be asking is, what group of people is the next largest ‘at risk’ group? The latest and most accurate research tells us the most ‘at risk’ group for contracting HIV is women. No special varieties of women – that is – nothing to do with sexual orientation, religion, etc.

“Today, women account for more than one quarter of all new HIV/AIDS diagnoses. Women of color are especially affected by HIV infection and AIDS. In 2004 (the most recent year for which data are available), HIV infection was the leading cause of death for black women aged 25–34 years” (Source: http://www.cdc.gov/hiv/topics/women/resources/factsheets/women.htm). Furthermore, US studies also tell us that women–patients who have HIV are under managed. It’s not difficult to imagine the forces that place women particularly at risk.

What does this mean in practical terms? It means that women who are positive don’t necessarily know it. Women who do know their status may not necessarily be accessing and, in turn, receiving adequate health care for a gamut of complex reasons that we need to be exploring, as a society. This also means there is a lack institutional provision which if in place could better serve the growing numbers of women being diagnosed.

In the US, it is the lack of infrastructure (sensitive to pervasiveness of the stigmatization of people with HIV) that is the deep-seated problem of our times. Front page news such as: “Schwarzenegger cuts AIDS services – eliminates funding for viral-load testing” (Seattle Gay News, July 31st, 2009) is gravely concerning to say the least. Despite the outcry that, to eliminate early intervention, treatment, education, prevention programs has been described as “beyond immoral”, California is happy to cut (i.e. substantially lower) the budget for HIV-AIDS prevention.

Correlate this to the increasing numbers of people contracting the virus and add to this equation the social ills faced by those affected in hard-to-reach social and economic circumstances and we’ve got a major conundrum. This bleak read of things shouldn’t be a surprise to anyone with the cuts to HIV-AIDS funding – a grotesque reality.

That said, let’s but for a moment to stand in the shoes of someone with HIV. It’s fair to say, society is not kind to people with HIV. Doubtless and understandably, fear must set into the victim’s heart. Ostracism, rejection, and discrimination manifests culturally as the avoidance of HIV infected individuals, does it not? This would be isolating, yes? Add to this, rumors of compulsory HIV testing without prior consent (or protection of patient confidentiality) and anyone can understand (if they try) why some folks may be being deterred from seeking help. Affected people are simply scared of being outed because they are scared of the social consequences.

Spurred on by societal prejudice, violence against HIV infected individuals happens and in fact does – frequently. Social hatred toward people who are perceived to be infected with HIV is a legitimate concern for someone newly diagnosed. Therefore stigma related anxiety may be a significant reason preventing some individuals from seeking HIV testing – contributing to them failing to return for the results and proactively requesting treatment. The HIV embedded social experience has a way of negatively transforming what could be a manageable illness into a death sentence.

Nevertheless in the face of funding shortages, outreach and education is still being rigorously addressed by groups such as, Women Alive, based out of in Los Angeles (http://women-alive.org). Also remarkable is the activist-work being done in the Midwest, specifically, in the Chicago area. At the helm in the advocacy efforts for sustained funding for HIV-AIDS prevention is Chicago House (http://chicagohouse.org). A private non-profit social agency funded by both state and federal government, as well as private donors (Members of the board of trustees include community activists, and people from American Airlines, Strategic Hotels and Resorts, Northern Trust, Dunlay’s Restaurant Group, and the City of Chicago, just to name a few).

Chicago House serves the general population, as well; however exceptionally noteworthy is the work it’s doing in conjunction with the mission of the Aids Foundation (http://aidschicago.org). The agency manages the known HIV-infected population in the Chicago area, distributing appropriate services. Their mandate is to assist disenfranchised people to access health care, find social housing, appropriate employment programs and/or jobs – people who may be disenfranchised because they're too poor to afford meds; because of race and the ways institutionalized racism affects people's daily lives; and/or because they've been spurned by their community and family. Hence they need and deserve assistance. This is the premise on which Chicago House is based.

How is Chicago House tackling HIV/AIDS for different communities of color?

Simultaneously – doing prevention programs, helping to prevent new vulnerable people from contracting the virus; Chicago House helps those with positive status in relevant communities make their way in the world; and, all the while, it tries desperately to fight stigma. Just like Evany Turk does everyday, as a woman, living with HIV, and herself an activist.

In her own words:

“My life has changed drastically in the last three years but it has changed for the better…I feel that God has made it my responsibility to speak about my life and my living with HIV and that’s how I got into speaking and advocacy”.

Evany Turk’s personal story of how she came to contract HIV is heartbreaking. But the way she’s dealing with her positive status is not. In fact she’s an inspiration. “I became homeless because my family found out about my HIV status and thought they could catch it by just being around me, so I was forced to leave with no where go. Thankfully my hospital (University of Chicago) social worker found out I was sleeping in the hospital emergency room and started referring me to different agencies for housing. Chicago House was one of those agencies”.

What makes Chicago House different from other help-places? “Most agencies just provide the immediate need and that’s all, but with Chicago House it was like somebody followed me around and knew my every thought because as soon as I would become worried about something they would either provide a way or help me find a way” explains Evany ever grateful.

Now Evany could be described as a victim of what ignorance of HIV can lead to:

She was struck by tragedy a couple of years ago when unbeknownst to her she was carrying on a relationship with man who, two years into the relationship, had contracted HIV from someone else and then passed it on to her. Her boyfriend (whom we’ll call Bill to protect his anonymity) professed monogamy during the course of their relationship. But, one day, he began exhibiting severe flu-like symptoms to the point where he thought he must have pneumonia or something. He decides to go to the hospital only to find out when he was there that he was HIV positive.

Did he tell his girlfriend Evany? No. Shockingly he did not.

Previous to this, Bill had convinced Evany not to wear condoms because he said he wanted to have a child. Subsequent to him finding out he had HIV; he simply maintained the status quo in the sexual relationship. At the time he was either not educated about transmission risks or something more sinister was going on. Evany was quite candid with me during our interview. So I asked her bluntly, how does this happen? Broadly, she explained to me that, the dynamic of it, is, maybe a person is in such a state of shock-horror, is so distraught; almost not thinking, “so angry that someone gave it to them that they want to give it to someone else”. Ouch. I had heard of this psychology before so Evany’s explanation did not come as a surprise to me.

Evany did indeed contract the disease. She found out when she went into the local clinic experiencing that day pronounced symptoms of fatigue and dizziness. Low and behold she gets tested for HIV and the test comes back positive. Point is though, Evany thought she was in a monogamous relationship and it could happen to any of us. Her boyfriend didn't tell her about his status. Because, that would have meant admitting that he'd had sex outside the relationship and, as Evany explains, “that may have meant losing the relationship”. So he opted to “say nothing”. He may not have known how easy it was to transfer the disease.

Why he didn’t use condom, one might be inclined to ask, reasonably. A book could be written on this subject. But what can you do. If someone says [they] are monogamous to you, you tend to believe [them]. It became “easier for him not to tell me”. That way he didn’t face any of Evany’s queries and, in a sense; he could remain in denial of his condition if but inside his own mind.

Rejecting condoms happens all the time in relationships when one party believes the other is faithful and the woman is open to becoming pregnant. Evany went along with no-condom use in their relationship because he did say, she says, “he wanted to have a child with her”.

I asked her is she suffers from feeling sick all the time or nearly all the time and she said, “No, it can come and go”. But she says “It’s hard having HIV”.

“It happens to the most unlikely of people”. Evany can testify.

Today, in her job at the Chicago House, Evany makes sure people with HIV get the supports that are available to them in the city. “I have been positive for 8 years and in my current employment position, for three. I am currently working as the Positive Adherence & Stable Housing Now Program Coordinator and I love my job”.

“It’s all about helping people live a better quality of life”. Evany becoming a Chicago House staff member made sense clearly, ideally placed for the role to head-up the Medication Adherence Program (as she, herself, had “entered program” – various programs in fact – and became a proud example of how someone could live a good life, being positive, both literally and figuratively).

“My morning starts with answering emails or contacting potential clients that have left voicemails for me to contact them regarding entering program”. Professionally, her main job function is to make sure her client base adhere to their medications. She takes that job to heart, takes it very seriously. “I do all the administrative work for my program as well as hold a small caseload of clients. The majority of most days are split between the two”.

“Our program is an assertive outreach program so I do a lot of traveling around the Chicago land area.” She helps willing people with a regime which may include but is not limited to putting them in touch with resources and services, such as training workshops and courses, to learn about their rights and the implications of their HIV status in society at large. She teaches people how not to disclose their status within the bounds of the law (how to avoid stigma and discrimination; in other words), and; of course, she teaches her clients scrupulously how not to pass the virus on.

Evany’s personality is such that she overcame her tragedy and turned her liabilities into assets. Living with HIV in one way gave, and continues to give her, a mission. True, Chicago House gave her a job; that’s the key. But she made that job work.

Evany is often heard thanking all those who support Chicago House. There are people behind her, that’s clear: “The CEO of our agency, Reverend Stan Sloan, asked me to speak to some potential funders one day in 2006 and from then on I’ve done multiple presentations for the agency, been interviewed by local papers, did a television appearance with the mayor of Chicago, as well as spoke to various law makers regarding HIV/AIDS services. As a part of my job I have also been to different states speaking about why peers should be a part of a healthcare team for people with HIV/AIDS as well as with people who have other chronic illnesses”.

Evany has wisdom with share with healthcare legislators, responsible for HIV-AIDS funding: “I truly believe that the transmission of HIV/AIDS can be lowered if we had more national awareness campaigns with people that look like the people who are being affected. If we had a national campaign around awareness that was anything like the coverage we had on Michael JacksonMichael Jackson’s death imagine how many more people would get the message about how serious the HIV/AIDS pandemic currently is. If we could get more successful peers out in the public eye (the ones that are willing of course) encouraging people to get tested and inspiring the individuals who are living with the virus to live a better quality of life that would create a better situation for our country”.

“My point here is small efforts could make all the difference. I am looking forward to seeing what the Obama administration will do about national campaigns, I have heard his administration has started one but I haven’t yet seen it. The President does not have any ongoing commitments to any programs at our agency [specifically]. (I’m not sure if he has any commitments anywhere else). If they have some people sit down and think of new and creative ways to stop this pandemic that is the spread of HIV/AIDS I think they would reach the target populations and make a huge difference. There are a lot of great programs out here dealing with keeping people safe from contracting HIV/AIDS and helping people live with HIV/AIDS. Unfortunately a lot of these programs are being cut because of funding”.

Ain’t that the cold truth?

On the HIV advocacy and resource front Chicago House is said to be the only one of its kind in the US. No other agency that can be quoted has a position like the one that Evany fills. Why don't other agencies throughout the US take stock, follow suit in Chicago House's footsteps and develop the same sort of Peer positions? That’s the million dollar question. President Obama, if you’ve got a moment, Evany has something to share with you:

“If I could have twenty minutes to talk to the president about why he should make it a priority to commit the needed funds to this issue I would tell him to think about the old Chinese proverb: Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime. This is what has happened in my life and many others in this struggle that I speak to – an AIDS service organization or Community based organization taught them how to survive with this illness, in my case it was Chicago House; and now I don’t depend on the system, I give back to the system as well as my community. This also applies to keeping people negative if you teach them how to have safe sex and all that comes with it, they will learn; but if you just give them the tools (condoms, etc.)…who’s to say they know what to do with it”.

Evany’s favorite websites are: The body.com, Aidmeds.com and Thewellproject.org.