April 4, 2006

The Tear Sheet: The good news, and bad news, about AIDS

by Michael LindenbergerTwenty years ago, when Owensboro native Bill Cox resigned as managing editor of Hawaii’s largest newspaper, he wrote a surprising farewell column. He told readers he was one of 24,000 Americans who had contracted AIDS.It was the kind of news that, in 1986, evoked fear, and a great deal of discomfort in a nation that equated AIDS with certain death and, worse in some minds, homosexuality.Many things about AIDS were cause for fear, of course. Already, 13,000 people had died from the disease, according to the front page treatment of Cox’s announcement in The Washington Post.Indeed, just four months after learning he had contracted AIDS, the 37-year-old former city editor of The Courier-Journal told readers he was stepping down because he no longer “had the old energy” to carry on.Less than 24 months later, he was dead.The same year Cox learned he had AIDS, 22-year-old Lonnie Clark tested positive for HIV, the virus that causes it. Clark, of Louisville, recalled in a recent interview that he received the news of his status as if it was a death sentence.“I just wanted to graduate from college,” said Clark, a Louisville Male graduate who is now completing a master‘s degree in mental health counseling from the University of Louisville. “Then I wanted to be 30, then it was 40. Now, it’s whatever it’s going to be. I no longer think I am going to die of AIDS.”Now 42, Clark said he feels as healthy as he has in years. He just received a preliminary report from doctors that says his viral load — a way of measuring AIDS’ impact on the body — is so low that his disease is almost undetectable.Instead of dying from AIDS, Clark now fully expects to die from the treatments for the disease. More than 10 years of daily pills and injections have taken their toll on his liver and other organs, he said. He thinks he’ll be gone by his mid-60s regardless what course the disease takes in the future.Grim as that may be, it’s a hell of a lot brighter than the fate facing folks like Cox in 1986. In Kentucky that year, 37 people were diagnosed with AIDS. All but one have died since. Most people with AIDS then died quickly and quietly, and often miserably.The medical advances — including the treatments that have thus far saved Clark’s life — have been steady, and some expect a comprehensive, single-pill-a-day treatment regimen to make it to market by the end of the year.If the science suggests the nation’s brain has progressed since the 1980s, the dulling of the intolerance shown toward gays, generally, and AIDS victims specifically, shows its heart has grown as well.In his New York Times obituary, Cox would be remembered as an editor who courageously disclosed his disease at a time when many others with AIDS had died under the guise of other sicknesses. They never publicly disclosed the presence of AIDS.Indeed, it is shocking to realize how far we’ve come as a nation, and a city, since then.In 1986, men who had sex with other men in Kentucky were officially criminals. Workers who admitted they were gay could be fired on the spot in Louisville. Legally.Despite our advances, however, living with AIDS is so difficult that it can seem only slightly easier than dying from it, said people in Louisville who treat AIDS patients.“When you have AIDS, your health becomes your full-time job,” said Janet Mann, director of program development at Louisville’s AIDS Interfaith Ministries of Kentuckiana. “You often end up on disability, and it can really lead to an impoverished existence. With there still being quite a stigma, you deal with a lot of isolation and depression that don’t come with other things.”And the relative successes that have made it possible to live with AIDS have also made deterring it more difficult, according to Mann and others who work with AIDS patients here, by lulling them into a false sense of security.“The misconception stems from the new medicines bringing longevity to people’s lives,” Mann said. “People look at AIDS as more of a chronic illness than a fatal disease. They think, ‘All you have to do is take medicine when you get it, so it’s no big deal.”Problem is, people still die from AIDS. Of the 324 people in Kentucky diagnosed with the disease in 1996, for example, 101 are dead.The pills don’t work for everyone, said Brad Hampton, an AIDS education specialist for the city of Louisville, and chairman of the board of the Louisville AIDS Walk.Over the past few years, the lessening sense of urgency about the disease almost killed the signature event that helps raise funds for more than a dozen agencies that provide services to Louisville-area AIDS patients.Attendance at the annual walk has been down, and fund-raising dropped off so severely between 2001 and 2005, from $310,000 to $80,000, that the walk’s organizers almost shut it down earlier this year.“The overall feelings about HIV/AIDS is it not a big emergency any more,” said Hampton. “The media has glorified the drug treatments that are out there. But for some who get them, they don’t work.”Besides, if ever AIDS was a disease non-gay men and women could ignore, that time has passed. Increasingly, it is women who have AIDS, according to Mann and others. And the disease has disproportionately affected African-American Kentuckians, as well.Of the 4,253 cases of AIDS diagnosed in Kentucky since 1982, 30 percent have involved African-Americans, even though blacks make up on only about 7 percent of the state’s population, according to a 2005 report by the Kentucky Department of Public Health. In addition, just 56 percent of the cases have been linked solely to exposure to the virus through sex between men.That’s why it’s great news — and important news — that the AIDS Walk organizers reversed course in March, and decided that rather than close the walk, they’ll rejuvenate it.Mike Brown, a real estate broker, was brought on to give it more pizzazz, with the goal of nearly doubling the take this year.Mark your calendars. The 2006 walk (more info at www.louisvilleaidswalk.org) is scheduled for Sept. 24 at the Belvedere.Outright hostility toward AIDS patients is more rare today than it was in 1986, when Cox told his readers why he was quitting the paper. But by some measures, the complacency that has replaced it can be just as chilling. By participating in the walk, you can pick up where Cox left off, and help make living with the disease more bearable for those who have it.Cox told The Washington Post that he had a simple but powerful reason for going public. “I did it because I wanted to help others with the disease feel less alone,” he said. Michael Lindenberger wrote the Tear Sheet column for LEO from 1996-1999, and during that period he also served as the paper’s chief political writer. He rejoins LEO as a contributing writer after reporting stints at The Dallas Morning News and The Courier-Journal, where he was a state correspondent and bureau chief. Send him story ideas at michael.lindenberger@gmail.com