Living With AIDS, Some Now Embracing a Surprisingly Long Future

Vince Crisostomo is about to buy a new car. That may not sound like a very bold thing to do, but for a person living with AIDS it is a big commitment -- a sign that he's confident he will be around long enough to make the payments.

"I have lived most of my adult life thinking I was dying, and because of that, I have done some things that I might not have done. … I probably said some things I would not have said. And then all of a sudden, I realize that maybe I am not dying, and I realize I have to shift and change. … I didn't have any future plans, and now I am trying to do that," Crisostomo said.

He was 28 when he contracted HIV, the virus that causes AIDS, and has been living with AIDS since 1998.

"At one point a doctor told me I probably had about six months to live," he said. "I think out of everything that has happened, that has been the hardest thing."

But a lot has changed in the 25 years since a mystery disease, now known as AIDS, was first reported by the Centers for Disease Control and Prevention.

Advances in medicine have made it quite possible to live for years, possibly even decades, with a disease that was once considered fatal.

"AIDS didn't become a disease you could actually live with until the late 1990s," said Dr. Michael Gottlieb, who treated the first reported AIDS patients in Los Angeles in 1981 and has treated hundreds of AIDS patients since. "It's only within the last seven years to 10 years that cocktails of medications can drive the virus into a very deep remission and allow people to get better immunologically and feel reasonably normal."

Of the estimated 40,000 Americans who will test positive for HIV this year, 80 percent can expect to live at least five more years, according to a recent report in the Journal of Infectious Diseases. Sixty percent could survive another decade. Thirty-two percent could live 20 additional years, and 10 percent could live 30 years after their diagnosis.

In fact, the risk of death due to AIDS has fallen more than 70 percent since the mid 1990s.

'AIDS Baby' Grows Up

Cristina Pena was one of the first "AIDS babies," those who were born HIV-positive in the early 1980s. The 21-year-old student has never really known a life without medication and the threat of AIDS.

She now takes five pills a day, down from the 11 or 12 a day she had to take when she was 7 years old.

Though Pena is technically considered an AIDS patient, she has never been very ill.

"I grew up fine. I had no idea I was even sick, and it wasn't even hinted," she said. "I had a few pills to take, and it was attributed to ear infections, and since I was so little, listening to your parents, it wasn't even a question."

When Pena was about 8, she started to wonder why she was taking so many pills.

"One night I sat down and ... I said, 'Mom, there's something wrong with me. Why do I have to take these meds?' And all the whys and questions started to erupt," Pena said.

She kept the truth hidden from all but her closest friends and family. She said her teenage years were the most difficult. In high school she started dating a classmate, who is still her boyfriend today. His parents had a hard time accepting her HIV status.

"There was no problem. I was never a deadly force or a killer or a problem for anyone [as a kid]. Until this relationship sprouted. Then … I was a threat," she said. "I think one of the hardest things to deal with, outside of death with the disease, is death and then companionship."

She's found there is still a stigma associated with HIV and AIDS, and she said she's often unfairly subjected to that stigma -- even though she was born with the disease.

"As I've matured, I'm no longer a child. I no longer pass under the line as being an innocent victim. … When I do disclose to someone [that I'm HIV-positive] they automatically assume that I ended up getting it from a partner. And it's not the truth at all," Pena said.

The Dreaded Test Results

Jennifer Jako did contract HIV from a partner when she was just 18 years old. She remembers vividly the day she was informed of her test results.

"I started thinking about all the things that would never happen. I would never have a partner or a husband to love me, that would share their life with me. I knew I would lose friends. And I knew absolutely I would never have a child," Jako said.

And yet 15 years later, Jako is renovating a new home with her husband and is expecting a baby girl. She is about eight months pregnant.

She and her husband waited for years, hoping that medical advances would make it easier to have a baby without exposing the child to HIV.

"It's OK for me now with the transmission rate so low to invite a child into our lives," she said. "It's a gift."

That's a big change from 1991, when the CDC estimated that the number of babies born with HIV had peaked, with 1,650 babies born HIV-positive. In 2002, between 144 and 236 babies were born infected.

Jako said her doctors told her she has about a 1 percent chance of passing the virus on to her baby. It's a risk she and her husband are willing to take.

"I used to live for every day and just making the most of that day," Jako said. "But today, I am starting to think about having a future. And it's just in the past three or four years that I'm realizing that I'm going to start getting gray hair, and I'm going to get older and get some wrinkles … and I might even get to be 50."

Make no mistake -- Jako, Pena and Crisostomo all say living with HIV and AIDS is not easy, and they warn against complacency. They worry about getting sicker. There are terrible side effects that come with the drugs they are taking, and they have all watched friends die.

For Crisostomo, the summer of 1995 was his lowest point. He lost three friends every week that summer. Seven of his buddies died on one day alone -- July 27, 1995. He has the date memorized.

"I think there is the misperception that having HIV is something trivial," Gottlieb said. "Not so much that it can be cured, but that you can take medication and it will be fine. That doesn't take into account all the social ramifications of being HIV-positive, the stigma that is still associated with having HIV, and the rejection that a person can face socially or at a workplace if they disclose this diagnosis."

Twenty-five years since the discovery of the disease in this country, and many Americans are still ignorant of the facts.

"I know there's still great ignorance," said Jako. "There are still people who think you can get it from sharing a glass of water with me. Or if they got bitten by a mosquito that just bit me, that they could get it, or through casual contact -- a handshake, a kiss on the cheek, a hug. It's harder to get than that. I just hope that we can move past that ignorance as a population and make this easier to fight. The more we talk about this the more we can fight this disease."

And Crisostomo is personally raising awareness through the organization Men of Asia & the Pacific Testing HIV (MATH), which targets Asian immigrant communities through a five-year study of 2,000 men in six metropolitan areas. (http://www.api-math.org/)