The Body: HIV Leadership Awards

The Winners: Profiles in Courage, Compassion and Fortitude

Winners of TheBody.com's HIV Leadership Awards work in a multitude of settings, including prisons, universities, hospitals, clinics, military hospitals and large agencies. Many of our winners have been deeply involved since the epidemic's earliest years. And most of our winners spend each day grappling with some of the most intractable problems affecting the epidemic, including the staggering impact of stigma and the increasingly common use of crystal methamphetamine.

Twenty Years of Steadfast Commitment

When tallying the winners, one of the things that most surprised us was just how many people have remained devoted to battling HIV since the epidemic began. You'd think that after year five -- or 10, or 20 -- that these people would have lost some of their energy and commitment.

Joni Lavick, for instance, is a psychotherapist who, during the dark early years of HIV in Los Angeles, paid visits to homebound people with AIDS. Visiting the homes of so many dying men was a sobering experience for her, she says, yet 20 years later, Joni is still going strong: She's now the Director of Mental Health Services at the L.A. Gay & Lesbian Center, where she counsels individual HIV-positive clients and leads HIV support groups.

Charles Farthing, M.D.

Then there are clinicians like Charles Farthing, M.D., and Keith Henry, M.D., who established HIV clinics back in the days when they could offer little in the way of real treatment, beyond a few pills to help stave off Pneumocystis jiroveci pneumonia and other opportunistic infections. Kristen Ries, M.D. -- the only HIV specialist in all of Utah through much of the 1980s and 1990s-- admits now that she was probably suffering from post-traumatic stress disorder as the AIDS death toll piled up during those early years.

The Persistence of Stigma

Many of our award winners work minor miracles every day in rural America, where general practitioners are often ignorant about HIV treatment guidelines, and where the stigma of infection tragically still remains as crippling a disease as the virus itself.

Cyndee Burton, M.D.

Cyndee Burton is a nurse who founded an HIV clinic in rural Kentucky -- and to this day, she says protestors still occasionally gather outside the clinic's front door, holding up signs that say, "Shame on You." She located the clinic in an out-of-the-way area to allow patients to enter discretely.

Scott Russell, D.O., oversees the care of 1,350 HIV-positive people in Biloxi, Mississippi and throughout Mississippi's gulf coast. "I live and work in a region of the country that is notoriously brutal to anyone different," he says.

Kathleen Gerus-Darbison

Kathleen Gerus-Darbison, who has been living with HIV for more than 20 years, is an AIDS advocate and speaker in rural Michigan. She recounts, "I've had people up in my face with Bibles, telling me this is my 'punishment.'"

And physician assistant Joel Wesley Thompson, who works in North Carolina, says, "Here in Charlotte, there is still an HIV stigma that makes it hard for some to seek out and get treatment. I have maybe a hundred or so patients who drive over an hour to come see me instead of being seen in their home town by their local primary care providers because of their fear of disclosing their HIV status."

This fear is also common in urban areas and within the true epicenter of the U.S. epidemic today: the African-American and Latino communities, where the virus is spreading many times faster than it is among whites. Bethsheba Johnson, a nurse practitioner at Luck Care Center in Chicago's far South Side, acknowledges, "There is still real stigma among African Americans." She is part of a unique team of entirely African-American healthcare workers that is witnessing first hand the devastating impact of HIV on nonwhite communities in the United States.

Bethsheba Johnson

"Some family members are supportive if the patient has disclosed his or her HIV status, and others will reject their infected family member or be too frightened of contracting the virus through casual contact: making their loved one eat off paper plates or disinfecting the toilet when they use it," Johnson says.

Many of our HIV Leadership Award winners mused about the many thousands of people with HIV who they know they could help if only those people would get tested. Many of the healthcare providers in rural areas and in the South noted that, particularly for African Americans and Hispanics, people with HIV too often wait until they are sick to visit a doctor.

HIV in the Military

One surprising group of people with HIV that receives excellent treatment despite the risk of stigma is military personnel. HIV is a lot more common than you might think among those who are serving, or have served, in the U.S. military.

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Ten Years, and Many Lifetimes, Ago

Ten years ago, a revolution in HIV treatment began in the United States. Part of it came in the form of a pill; the other part had no form at all.

When TheBody.com was founded in 1995, the United States had experienced 10 years of rising infection rates, 300,000 deaths, widespread public ignorance and precious little hope.

But by the end of the year, a new type of help was on its way: In December 1995, the first protease inhibitor, saquinavir (Invirase), was approved. Seemingly overnight, everything changed.

The introduction of a second class of drugs -- which ushered in the era of triple-drug therapy -- gave new hope to people whose AZT (Retrovir), 3TC (Epivir) or ddI (Videx) treatment no longer worked. With the addition of another protease inhibitor, indinavir (Crixivan), a few months later, these potent new triple-drug regimens were hitting the virus harder than ever before.

Were we about to witness the transformation of HIV from an almost inevitably fatal disease to a chronic one? At the time, no one even dared imagine it. All anyone wanted was a respite from the dying.

At the same time, a different kind of revolution was brewing on the communication front. It was called the World Wide Web. Many people didn't quite know what to make of it at first, particularly when computer ownership was still very much a luxury. But it soon became apparent that the Web represented a completely new way for people to access information -- and, as importantly, for people with HIV to find support, no matter who they were or where they lived.

It was the perfect medium for the HIV community, and it arrived at a key moment in the epidemic's history. Researchers were on the cusp of developing a new crop of HIV medications, and their understanding of the virus was beginning to grow by leaps and bounds. There was a massive amount of information to pass along, and a dire need to connect with people who, because of fear and stigma, couldn't bring themselves to visit an AIDS organization for help -- or didn't even have an organization in their area to turn to.

From the start, we hoped that TheBody.com Web site would provide a way for everyone who was infected with HIV to take charge of their own health, access the latest information and discover that they were not alone in living with the virus. TheBody.com soon became a hub for the best prevention and treatment educational materials from AIDS organizations around the country, as well as expert advice from leading minds in HIV medicine and support.

And now, here we all are. Although much of the world tragically, and intolerably, remains in straits that in many ways are as desperate as those we once experienced, in the United States, HIV is no longer equated with tombstones and graveyards. We remain frustratingly far from a cure, but we can't help but be thankful for what the last 10 years have brought us: new treatments, more knowledge, longer lives and a virtual venue, open 24 hours a day, 365 days a year, where anyone can go for answers and help.

"The magic of new HIV medications and the Internet can only do so much; the real wizardry lies in the hard work, optimism and fortitude of these frontline heroes."

Of course, that's not all the last 10 years have brought us. They've also brought us some incredible people -- thousands of them, in fact -- who have dedicated their own lives to ensuring that the lives of people with HIV are as lengthy, healthy and happy as anybody else's. The magic of new HIV medications and the Internet can only do so much; the real wizardry lies in the hard work, optimism and fortitude of these frontline heroes.

A Need for Action, and Those Who Have Met the Call

TheBody.com's search for HIV Leadership Award nominees found an impressive number of exceptional Americans working tirelessly, and largely unnoticed, to turn back the tide of HIV infections within this country's borders and improve the lives of a steadily increasing number of people with HIV.

The 73 people to whom we have the honor of presenting an HIV Leadership Award are extraordinary. They are men and women; they are straight, gay and transgendered; they hail from a variety of religious, ethnic and geographical backgrounds. And they will continue to be there for America's HIV-positive community until a cure is found and the virus has become little more than a distant memory.

Ten years after TheBody.com's founding, and more than 20 years since HIV made its unwelcome intrusion on our lives, we know that there are far, far more than 73 people who are worthy of these awards. We can only hope that by calling attention to these heroes, we can also shine a spotlight on the dedicated teams of people they toil alongside, and on the thousands upon thousands of incredible people who have committed their lives to one of the most urgent causes of our generation, so that the next 10 years can be a time of greater hope, understanding and progress toward a cure.

We also hope that our HIV Leadership Awards program will attest to the fact that HIV is still a growing problem here at home, requiring the attention of our government, our news media and our society as a whole.

Browse through our interviews with these outstanding people and you'll begin to truly appreciate the remarkable people working on the epidemic's front lines.

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