Taking the Heat
updated 08/01/1994 AT 01:00 AM EDT
•originally published 08/01/1994 AT 01:00 AM EDT
In fact, three years later, DeMarco, 35, a municipal researcher from Union City, N.J., is flourishing. He takes no AZT or other drugs to control AIDS. He feels healthy; his weight and blood count are almost normal; his cough is long gone, as are the lesions. Although he still tests positive for the presence of HIV the procedure seems to have reversed his full-blown AIDS. Unfortunately, Michael, an illustrator, did not do as well. He died in November of 1991, at 34, even after undergoing the procedure—called hyperthermia—a second time.
Such dramatically differing results (as well as some deaths on the operating table) suggest why hyperthermia is not FDA-approved for the treatment of AIDS. Understandably, DeMarco, who believes he owes his life to the procedure, has become a passionate advocate. Since his treatment he has devoted himself to persuading a wary medical establishment to begin controlled hyperthermia studies. Although he received some support in the medical community, it was not until last September, at a New Jersey town meeting with Sen. Frank Lautenberg, that he achieved his greatest success. DeMarco stood up and asked why the FDA was so against testing hyperthermia as an AIDS treatment, adding that he was then in his 33rd month of remission. "I've seen young people deteriorate as this sickness takes over," says Lautenberg, who had lost a staff member to AIDS. "To see DeMarco healthy made me feel good."
Lautenberg contacted the FDA. Later this month the first whole-body hyperthermia trials will begin on a handful of Kaposi's sarcoma patients. They will be conducted by Hemo-Cleanse of West Lafayette, Ind., which hopes to make the equipment used to perform hyperthermia, and IDT of Pittsburgh, which would sell the equipment. Some doctors, including DeMarco's personal physician, Andrew Zablow, a radiation oncologist at St. Barnabas Hospital in Livingston, N.J., are excited by the prospect. "Chuck's lab results indicate that he seems free of the disease right now," he says. "It is very remarkable 40 months later."
But most American AIDS experts remain unconvinced of the benefits of hyperthermia, which has been around in various forms since the ancient Egyptians. "It may actually increase the levels of virus in the body, regardless of what you do to the Kaposi's sarcoma," says Jeffrey Laurence, of Cornell's medical school and a spokesman for AMFAR (Americans for Aids Research).
"It concerns me that false expectations are aroused," says Dr. Alvin Friedman-Kien, a professor of dermatology and microbiology at New York University Medical Center, who would like to see further data.
DeMarco, though, remains optimistic. Today he lives in a two-family house in Union City with Brian Dorsey, 33, an antiques dealer he calls his life companion, and a dalmatian named Dottie. Chuck, who still finds it hard to believe that his good health is permanent, remains on disability and spends most of his time working for H.E.A.T. (Hyperthermia Education and Treatment) INFO, a 10-member foundation he formed. These days he has energy to burn, and his T-cell count—an indication of the health of his immune system—which was once as low as 220 is now 831. AIDS is not the first health problem to have an impact on DeMarco's life. Born in Belleville, N.J., to Charles DeMarco, a maintenance supervisor, and his wife, Carol, a Holiday Inn waitress, he grew up in a loving Catholic family whose central concern was Chuck's brother Tommy, now 32, who was born brain-damaged. When his mother found out six years ago that Chuck was HIV-positive, she was devastated. "My world was caving in," she explains. "I had one son in an institution, and I felt I was losing my other son."
Fearing that hyperthermia was too risky, the DeMarcos refused to lend their son the $6,000 he needed for the procedure and the trip to Italy. Chuck eventually borrowed the money from a friend. "I am proud of him," Carol says today. "God has spared him for a reason."
Chuck feels that sense of purpose himself. "I made a vow," he says, "praying to God: 'Please don't even think of taking me until after hyperthermia is an accepted procedure in the United States.' " Now he devotes himself to publicizing hyperthermia—and spending time with Brian. Yet Chuck never forgets Michael Vernaglia and has commissioned a 12-by-12-foot patch of the traveling AIDS quilt as a memorial. "Just as we were both pioneers in hyperthermia," it reads, "I will continue in the search for a cure."
GIOVANNA BREU in Union City