AIDS survivors battle guilt, finances, disease
Advances in medicine create new struggles
Greenville News

When AIDS began to ransack and pillage his immune system and the disease had killed nearly a dozen friends, Morris Jackson stopped fighting.

He parted with the books he loved to read, flamingo collectibles friends gave him and his beloved Scarlett. He took the floppy-eared cocker spaniel to an animal shelter so she wouldn't find his body.

Then, he overdosed on Dilantin and Xanax. A friend found him, and Jackson woke to doctors pumping his stomach.

Today, a decade after being diagnosed with HIV on an April Fool's Day, Jackson is one of a rising number of AIDS patients no longer planning a funeral. Advances in AIDS medication have slashed the AIDS death rate, raising hope among health officials battling the epidemic that surfaced in 1981.

In the Upstate, the number of AIDS deaths has dropped from 93 in 1993 to 57 in 1997, according to the latest numbers from the state Department of Health and Environmental Control. Numbers for 1998 aren't available.

While some who have survived the early slaughter of the disease may have rare genes that slow the spread of the virus, many have cupboards that look like mini-pharmacies. Some take dozens of pills a day on a rigid, demanding timetable.

The growing number of long-term survivors confront a new barrage of medical problems, face rising drug costs and often have a sense of guilt from memories of AIDS choking the life out of friends.

A typical drug regimen for an HIV/AIDS patient costs about $10,000 to $15,000 a year -- for a lifetime. Most navigate through private and public assistance programs to get help paying for the medicine.

"This is one of the few diseases that is a lifetime illness that is constantly being treated with newly released, very expensive, nongeneric drugs,A said Andy Hall, executive director of AID Upstate, a nonprofit organization that provided financial assistance to 331 people last year.

The longer patients live, the more money they spend.

"Economically, we're sometimes victims of our own success," said Dr. Michael Kilby, medical director of an AIDS research and treatment facility at the University of Alabama at Birmingham. "When you have people doing better and living longer, their costs accumulate."

The number of AIDS-related deaths nationally peaked in 1995 at 50,700, then fell to 39,200 in 1996 and has continued its plunge since, according to the Centers for Disease Control and Prevention. The CDC estimates that 40,000 to 80,000 people are infected with HIV each year. In South Carolina, the number of new HIV cases rose slightly from 1997 to 1998.

"A lot of patients stopped working, cashed in their life insurance and were preparing for the inevitable," said Dr. John Schrank, medical director of the Greenville Hospital System's AIDS clinic.

Many people diagnosed in the early 1990s quit their jobs, only to be rejuvenated by the powerful new class of medicine. The drugs, called protease inhibitors, came out in the mid-90s and block an enzyme critical to the virus's ability to reproduce.

While the drugs brought many back from the brink of death, they provided a false sense of hope for others. Two studies released Wednesday found that years after drugs have virtually eliminated the AIDS virus from the bloodstream and forced it into hiding, it can continue to infect new cells.

Other long-term AIDS survivors must battle medical problems such as opportunistic infections, anemia and wasting.

Anemia, an abnormally low level of red blood cells that often complicates HIV/AIDS treatments, affects up to 95 percent of HIV patients. Wasting is the loss of 5 to 10 percent of lean body muscle.

"The bottom line is that we used to take care of patients knowing that they would succumb to their HIV within an average of 10 years," said Dr. Tom Chiller, an HIV/AIDS specialist at Stanford University Medical Center.

Doctors said they also face questions about the long-term side effects and successfulness of the array of HIV drugs.

From his apartment with a black and white cockapoo named Rocky curled at his feet, Jackson said he doesn't get his hopes up about a cure, but is getting on with his life. Friends rescued Scarlett from the animal shelter, and she cuddled next to them.

A laptop sitting on his coffee table sums up mixed emotions. He says he never allowed himself to think as far in advance as the possibility of the cure, but the red letters on the computer screen read: "Until there's a cure..."

Jackson will turn 40 on July 2 and thinks he may have been infected as early as 1983. He never thought he'd lived this long and said the rising number of AIDS survivors can be misleading.

"Yes, it is a manageable disease," he said. "But all the breakthroughs don't work for everybody. I've known 11 people in the last five months to die. People still die."

Jackson, an only child who moved from Spartanburg to Greenville in 1993 and was raised in Union County, has an ongoing list of top 10 questions to ask God when he dies. Among them: "What is the purpose of dust?" and "Who shot JFK?"

But the one he ponders most: "Am I right about the purpose of AIDS?" Jackson believes AIDS was designed so everyone would know someone infected and then people would come to love each other.