Multiple challenges await long-term survivors

They cope through helping others

Before Tony Dorsey, an outreach worker with FACT in Las Vegas was infected with HIV through a needlestick injury, the possibility that his job as a phlebotomist could place him at risk never once occurred to him.

That was in the mid-1980s.

Likewise, Carlos A. Perez, 43, an information services coordinator, of Test Positive Aware Network in Chicago traces his HIV infection back to the 1970s when years of birth control pills and antibiotics had helped launch a sexual revolution. No one could have imagined it soon would be hijacked by a deadly, opportunistic virus.

Now the two men, having lived with HIV infection for two decades or longer, represent a growing population of people who have experienced the disease as a long-term, chronic condition that has caused them some medical agony, but has not stopped their ability to work and help people who are newly infected.

Dorsey works with HIV clients by day, but his evenings are spent hooked up to a dialysis machine, which he starts at 10 p.m. and turns off at 8 a.m.

"When I travel, I have to take a portable bag and have to do dialysis two-to-three times during the day rather than overnight," Dorsey says. "I just appreciate the fact that I have a good medical team and can communicate well with my doctors and health care team, so they can coordinate dialysis as well as my HIV treatment."

Dialysis has been a reality in Dorsey’s life since 1998, shortly after he received HIV treatment that proved to be toxic to his kidneys.

"I have a spiritual background, so I’m able to deal with it," Dorsey says. "You either choose to live or die; and I choose to live so that I can talk with other people and help them improve their quality of life."

Using experiences to help others

Because of his own health problems, Dorsey has volunteered for both kidney and AIDS organizations.

Until January 2003, when Dorsey moved to Las Vegas, he had been struggling to keep his weight up and had been anemic. Now he has regained 40 pounds, has taken medication to treat his anemia and is on an antiretroviral regimen that is paid through the AIDS Drug Assistance Program (ADAP).

His dialysis medications are paid through a state drug assistance program for which he pays a monthly fee of $119, and his health care is paid through Medi-care disability. Dorsey is not eligible for Medicaid.

"With going back to work, I have to make sure that I don’t have to pay extra because my income changes," Dorsey says. "What I’ve found is that with a lot of people with HIV, when they get on disability and receive SSI [Social Security Income] or Medicaid, they sometimes make more money on disability than they do if they go back to work, so they don’t want to go to work and lose their benefits."

Perez was on disability for 10 years, but managed to regain his health and return to work. "When you have a 10-year gap in your resume, it is very hard to explain it," he points out.

Fortunately for Perez, he was hired by Test Positive, where he provides information to HIV-infected people both in the Chicago area and also around the country through the organization’s web site (www.tpan.com).

"The thing that flips me out is that I get to communicate with people in Utah and Nebraska who don’t know where to turn for help," he says.

Perez tested positive in 1984, and was among the first to receive antiretroviral drug treatment. "I did AZT for a while back when they gave people a little more than what was necessary, and I was lucky enough that although I had harsh reactions, I was able to get past that," he adds.

"Then I have been on two regimens, and at the current time, I’m on structured treatment interruption and have not been taking medications since October 2002," Perez explains. "I’m doing very well and am seeing the doctor every month."

Perez has never had an opportunistic infection, so all of his health problems have been the result of medication side effects. These have included thrombocytopenia, anemia, inflammation, and central nervous system side effects.

"The worst side effects were from Sustiva, which I took two years ago," he says. "What happened to me is that I’d wake up in the middle of the night and either be shrieking in horror or laughing incredibly, but I never knew what dream it was that was making me so scared or tickled pink."

Plus, the side effects made him feel like a zombie, and when the side effects hadn’t gone away within a month, he stopped Sustiva and switched to Viramune, which worked well for a long time, Perez notes.

Despite these experiences, he focuses on the positive fact that he is still alive, some 20-plus years after he was infected.

"Every day, I find that there are more and more of us who are in our 40s and who became infected about the same time and were lucky enough to survive," Perez says.