Pin It

Living with AIDS 

More people with HIV/AIDS are surviving into middle age. For some, the biggest adjustment is accepting that they're going to live.

John, who is HIV positive, thought he had a blueprint for his golden years. "Someone asked me the other day if I had a retirement plan. I said, ŒWell, my retirement plan was that I'd be dead by the time I was 38 years old,'" he joked during a recent phone interview.

He'll have to make other arrangements. John, a 47-year-old construction worker who asked that Gambit Weekly not use his real name, has now reached middle age. He realizes that he's not likely to die any day soon, at least not from AIDS. In fact there has been a progressive age shift occurring in recent years among the population of those who are either HIV positive, or whose infection has progressed to an AIDS diagnosis.

In 2003, 36 percent of people living with HIV/AIDS in New Orleans were 45 and older, compared to 23 percent in 1998, according to the Louisiana Office of Public Health. Since 1998, the 45-and-older population has accounted for 84 percent of the increase in cases in the city. This graying of the HIV/AIDS population follows a national trend; some experts predict that by the end of the decade the majority of cases will involve people over the age of 50. (The total number of reported cases of HIV/AIDS in the New Orleans area currently is 7,219, a 10 percent increase from 6,533 reported in 2001.)

Much of the age shift can be attributed to the introduction of protease inhibitors in 1996, which as part of a drug cocktail known as HAART (Highly Active Antiretroviral Therapy), blocks HIV protease, an enzyme that the virus needs to reproduce itself. The new drug therapy proved to be nothing short of miraculous and snatched many AIDS patients back from the brink of death. Enrique Moresco was among those patients.

"My T-cell count (lymphocyte cells that are part of the body's immune system and are attacked by the AIDS virus) went to 17 in 1993, and I was hospitalized in intensive care with an AIDS diagnosis," he says. A normal count is between 500 and 1,200. "By 1996, I had drawn up my will, was ready to die, and had spent the last six months in bed. I was the poster boy for AIDS. The FDA had recently approved the drugs and my doctor prescribed them. Within in a month, I had started gaining weight and by two months I was back at work."

In some respects, Moresco could still be considered a poster boy -- but now as a middle-age man living with AIDS. He is a 48-year-old gay man, has lived with an AIDS diagnosis for more than 10 years and has been healthy, overall, since starting the drug regimen. Perhaps the greatest adjustment that Moresco had to make was realizing that he was going to survive.

"Of course there was the shock when I first found out I had AIDS -- two years was the maximum you were supposed to live and I made that," he says. "The hardest part was coming back to, ŒOK, I have to continue to live now.' It was a big psychological adjustment."

Moresco isn't complaining. Since learning of his diagnosis, he's been active in the local AIDS community. He received educational training from the NO/AIDS Task Force, started volunteering for the group, and in 1998 joined its staff. Currently, he is the director of operations.

As someone who both lives with AIDS and works as an AIDS care administrator, Moresco knows the financial obstacles that face most people with HIV/AIDS. While his insurance premiums are high, he considers himself lucky to have insurance at all. He notes that if he had to pay for his daily medications out of pocket, the cost could be upwards of $25,000 per year. Many patients are without health insurance and must get help from assistance programs such as the NO/AIDS Task Force, which are funded through the federal government's Ryan White CARE Act. Since demand is so high, his own organization is nearly at full capacity and can't accept any new referrals for medication. Other organizations that serve indigent HIV/AIDS patients in the city are also severely crowded.

John, the 47-year-old construction worker, isn't as lucky as Moresco when it comes to insurance. He joined a drug study in 1996 and has been on medication ever since. For a couple of years, he managed to afford his health insurance, but he had to give it up in 1998 for financial reasons. Since then, he's relied on assistance programs to pay for his medication.

Over the phone, John comes across as one of those people you can meet almost anywhere around New Orleans -- he has an easygoing manner that allows him to make friends quickly. But over the years, John has become frustrated as the system changed, and he now dreads his monthly visits to Charity Hospital's HIV Outpatient Clinic.

"Every month I have to plan on spending two full days down there -- one to see the doctor and the other to get my medication," he says. "And sometimes they only give you two-thirds of your monthly supply. They'll say, ŒWell, that's all we can give you. We'll owe you the rest.' So you have to then go down another day to get the rest. And many of the workers have no interest in making it go smoothly, and God help you if you raise a little hell. I don't want to sound too critical; if I didn't have the largess of the government, I'd be dead. But there is a monthly dread of going through this bureaucracy."

Dr. Lynn Besch, the HIV division director at Louisiana State University and the director of the HIV Outpatient Clinic at Charity Hospital, says the clinic serves 3,200 patients from the New Orleans area. The clinic's demographics reveal that HIV/AIDS "has been a poor person's disease," she says, noting that 55 percent of her patients receive free care. The demographics almost mirror the city's in terms of race: 68 percent of the patients are African American, 3 percent Hispanic, and 29 percent Caucasian. As a veteran of the AIDS battle, Besch has had some patients under her care for 15 years and agrees that the disease could be considered a chronic one.

"Yes, if someone can take and tolerate the medicine it can turn into a chronic disease," Besch says. "It's not quite as settled in terms of prognosis as, say, hypertension and diabetes, where you really have an expectation that it will come under control. You have to remember that the virus is a living organism and therefore a little more unpredictable."

That unpredictability means that the antiretroviral drugs used to treat the HIV have to be extremely powerful -- enough to poison the virus without poisoning the body. That would be a perfect scenario, but the reality is that the drugs have a number of side effects. Combined with the aging population and the virus itself, all of this has changed the way physicians now treat their patients.

"We spend a lot more time in clinic now dealing with routine regular internal medicine problems," Besch says. "Part of it is that people do live longer and part of it is that some of these problems are made worse or uncovered by HIV and/or the treatment. These problems include diabetes, hypertension, heart disease, and obesity -- routine, regular stuff. I have several patients where their HIV isn't as great a difficulty as their heart disease."

Marie, who asked that her identity not be revealed, has experienced many of these side effects. She is 56 years old and a member of the increasing number of women -- 33 percent in New Orleans -- living with HIV/AIDS. She was first diagnosed with HIV in 1985 after being exposed to it by her husband, who was a recovering intravenous drug user. Although her husband died of AIDS in 1992, Marie, a retired New Orleans Public School teacher, didn't show any symptoms of the virus until 1995. But by 1996, her T-cell count was down to 10, and her prognosis wasn't good. She won a lottery to begin drug therapy and today her T-cell count is back up to 800. However, since she began treatment, she has had to overcome a number of AIDS and/or HAART side effects, including facial lipoatrophy (the loss of facial fat, which gives the sufferer a gaunt look), two bouts of pneumonia, pancreatitis, stomach ulcers, and a large accumulation of fat behind the neck, for which Marie received liposuction.

Although Marie has experienced some of the depression that runs rampant in the AIDS community, she says she has learned to live with her disease. "I'm as healthy as a damn horse," she says proudly. Since retiring, she has become an AIDS volunteer, taken computer classes at Delgado Community College, practices yoga and socializes on a daily basis. Still, a stigma continues to surround HIV/AIDS, and she prefers to remain anonymous. Living with AIDS, she says, also means living with peoples' sometimes-painful reactions.

"My mother and father are proud of me, but ashamed of my condition," she says. "They feel that prostitutes, drug users and lowlifes of society have AIDS, not decent professional women like myself. My son, who is disabled with a spinal cord and brain injury, is embarrassed by my condition and thinks that I'm worse off than him."


Subscribe to this thread:

Add a comment

Pin It
Submit an event Jump to date

Latest in New Orleans Health and Wellness

More by David Winkler-Schmit

© 2018 Gambit
Powered by Foundation