Real faces of HIV say more needs to be done

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As she parses the details of being HIV-positive, Eva Fields, 37, lays out some essential facts: Her infection is a notable marker of her personal health but not a source of incapacitating shame.

She has never hidden the regrettable truth of how she contracted HIV—through unprotected sex with a man, now dead from AIDS-related causes—least of all from the three children she has mainly single-parented and the doting husband she married a year ago.

“I had to take the initiative to better understand what it meant to have HIV. Once I did that, the stigma … went away for me,” Fields told The Grio. “There was never any doubt in my mind that I could overcome this.”

The real faces speak

In a video highlighting the nationwide Empowered/Greater Than AIDS campaign, a Kaiser Family Foundation project that launched today, Fields, of Roswell, Ga., shares with four other HIV-positive women her sentiment and assorted details of what has transpired since her 1994 HIV diagnosis.

Like Fields, they are attaching to that campaign—whose much prominent public spokesperson is singer-activist Alicia Keys, also appearing in the video—their names, faces and real-life tales of how they are thriving in an era when HIV/AIDS is far from the automatic death sentence it seemed, years ago, to have been.

theGrio: Alicia Keys campaigns for HIV education

Alongside Keys, the five HIV-infected women, as grassroots campaigners, are assisting Empowered’s multi-pronged bid to hammer home to the broad public that HIV/AIDS treatments are more effective than ever.

They also are messaging on television, radio, print and digital publications that, while HIV/AIDS rates have declined overall, the disease continues to have a rarefied impact on women, especially black ones. Black females, according to the latest available data from the federal Centers for Disease Control and Prevention, account for two out of three newly diagnosed HIV cases among women.

Even so, an estimated 18 percent of infected people in the United States, overall, are wholly unaware of their infection, the Centers for Disease Control has reported. That’s due largely to the presumption that they are invulnerable and not at risk.

Making change

What would help change that for black women and everyone else, said Empowered’s Dr. Lisa Fitzpatrick, a public health researcher who also treats HIV/AIDS patients, is including HIV/AIDS in the kind of routine, blood-sampled screenings used to detect, say, diabetes, or other disease. For now, HIV/AIDS tests, which cost roughly $20, must be specifically requested. For women with health insurance, the tests also are now free through a provision of Obamacare that went into effect last year.

“Make sure that everybody you know knows what’s available to them,” said White House Senior Advisor Valerie Jarrett, during today’s press briefing to launch Empowered.

Heightening awareness of that provision among women is only one aspect of the screening issue.

“We have to make this more palatable so that health-care providers see that this is a manageable, chronic disease and do this screening along with other tests,” epidemiologist Fitzpatrick, director of the Center of Excellence for Infectious Diseases at United Medical Center in Washington, D.C., told The Grio.

Routine screening also would help de-stigmatize HIV/AIDS, which some still see as a kind of punishment for misbehaving, said Fitzpatrick, also a member of the AIDS Commission in Washington, D.C., which provides free anti-retroviral drugs to HIV/AIDS patients who are uninsured or cannot afford them.

Routine screening, as a standard of health care, also seems especially critical, public health researchers and advocates, grassroots activists and physicians contend, at a time when government and philanthropic funding for HIV/AIDS programs has diminished; and when programs that do qualify for funding face stricter requirements to empirically prove that their work is achieving the desired results.

Atlanta Harm Reduction’s needle exchange program, for example, has been viewed as a model of effectiveness—in a state where such exchanges are illegal, but law enforcement agencies, nevertheless, have arrested no one in connection with that endeavor.

Still, the organization’s $50,000 operating budget for the current fiscal year allows for far less programming than did the $150,000 2012 budget. The nonprofit now functions as a team of two with the help of volunteers.

Those who help struggle to stay afloat

While the bulk of the Atlanta project’s clients are men, women—including mothers who prostitute themselves because their nominal job skills keep them out of the legal job market—also are in those ranks.

Funding shortfalls, even if temporary, “are going to mean is that we will have to look at our strategy for reaching certain black women differently … We’re going to have to look at how we [medically] treat those who are HIV-positive, how we link and keep them in care and, then, have them become ambassadors to promote testing and prevention within their own social networks,” said Leisha McKinley-Beach, director of technical assistance and stakeholder engagement at the Los Angeles-based Black AIDS Institute.

While the Institute, another Empowered partner, has conducted no comprehensive survey, the California nonprofit has seen roughly a half-dozen HIV/AIDS projects that it has counseled fold recently, mainly due to decreased funding and the new qualifying standards demanded by government and private funders.

Meanwhile, the Institute has been counseling Atlanta Harm Reduction on how to expand its funding prospects and revamp programming in a manner that builds upon and retains the best of its services, which, in addition to the needle exchange, have incorporated job training and training in safe sex practices, including on how to insist that a male partner wear a condom.

Those are among the necessary “wrap-around’ services addressing the difficulties that do attend the lives of some with HIV/AIDS.

Some progress, not enough

Poverty, homelessness, personal denial and, in some cases, mental illness disproportionately plague the teen-age to 70-something female HIV/AIDS patients that Dr. Monika Daftary sees at Howard University, the first hospital in the country to adopt a Centers for Disease Control and Prevention-suggested rapid HIV screening effort.

“We still have kids who get diagnosed and whose parents kick them out of the house … It’s hard for someone to take anti-retrovirals every day if they’re hearing voices,” pharmacology professor Daftary, a clinician and researcher focusing on HIV-AIDS therapies, told the audience at a health disparities conference last month in Washington, D.C.  “If we can’t keep folks engaged, it’s like a cat chasing its tail. We’re never going to be able to fix this.”

Indeed, only a quarter of the 1.1 million Americans diagnosed with HIV—one in four of them are woman of every racial stripe—is taking drugs designed to keep their biomedical markers from falling to levels that indicate they have what has been conventionally defined as AIDS. Those who do maintain their treatment regimens reduce their chances of infecting others with HIV by 96 percent, with that study based on information that those with HIV self-reported.

“We know that antiretroviral therapy for HIV-positive individuals not only improves health and extends life for that individual,” said Dr. Risha Irvin, a senior advisor in Kaiser’s Health Communication & Media Partnerships Program. “But we also know that the initiation of antiretroviral therapy … substantially protected their HIV-negative sexual partners.”

Worldwide, fewer people are contracting and/or dying from HIV/AIDS, with that trend holding true in the United States. That black Americans still are disproportionately counted among those who are HIV-infected is partly due to the fear many blacks harbor about the pandemic and the failure of many blacks to have a candid discussion about the risks, observers said.

Those lapses reflect misplaced fear, confusion, “rage and anger,” said Stephanie Brown, 26, an HIV-positive performance artist-HIV/AIDS activist from Fayetteville, N.C., who is one of the five spotlighted, grassroots Empowered spokespeople.

“After I [eventually] was comfortable accepting the fact that is what is and that I was living with this virus, I started talking about it,” Brown told listeners at that  Washington health disparities conference. “And when I went to tell my story in prison, these men, they could be murderers, rapists … wouldn’t even come in the room with me when they found out my diagnosis … Thirty years [after the first AIDS diagnosis] and people act like this is still brand new.”

Or, as Eva Fields put it: “We can be afraid of the unknown. But, for me, this work is personal. I’m helping to put a face on it … and broaden the avenues” of discussion, awareness and prevention.

Keys, who began championing the anti-AIDS fight during a 2001 trip to Africa and co-founded Keep a Child Alive, said during today’s launch: “Knowledge is the best way to overcome ignorance and fear. Courage is the best way to overcome stigma and shame.”

New York-based freelancer Katti Gray specializes in reporting health, higher education and criminal justice. Her byline has appeared in The Washington Post, Salon, Reuters, Newsday, Ms., Essence, Ebony, CNN.com, ABCNews.com and other national and regional publications. Follow her on twitter@KattiGray.