Challenges of living with HIV

By, Becky Trout, Palo Alto Weekly, April 3, 2007

Virus no longer an automatic death sentence locally, but it still wreaks havoc -- and is still spreading

HIV is rampaging through Africa, Asia and eastern Europe, killing millions. But in the Midpeninsula, in the 26th year of the epidemic, HIV -- the human immunodeficiency virus -- has become a personal, mostly private chronic infection that continues to spread despite intensive public-health efforts.

Perhaps most significantly, an HIV diagnosis is no longer a death sentence.

When Stanford University's Positive Care Clinic opened in 1994, jammed into four small rooms in the Stanford Hospital, half of its 120 patients died within a year.

"Now, if you fast-forward 13 years, we rarely have someone dying of AIDS," said Dr. Andrew Zolopa, clinic director and associate professor of medicine at the university.

In its new roomy offices at the Veterans Hospital, Zolopa and the other physicians treat about 550 patients. Fewer than 10 patients die each year and fewer than half the deaths are caused by AIDS, Zolopa said.

Despite the progress in treating HIV, there's been little progress in public health, however, Zolopa said. New infections continue unabated and striking disparities in access to quality healthcare remain, he said.

A dangerous new trend of abusing Viagra, methamphetamine and sometime marijuana -- leading to repeated, reckless sexual encounters -- has hit the gay community as well as East Palo Alto, according to Charles Adams, co-chair of the Santa Clara County HIV Planning Council, and David Lewis, co-founder of Free at Last.

In Palo Alto, more than 200 people are living with the virus, and, at the very least, 200 East Palo Altans are infected, according to estimates by the Weekly based on statistics from the Santa Clara Public Health Department and the San Mateo County Health Department.

Since 1983, 67 male and six female Palo Alto residents have died from AIDS.

Palo Alto's HIV-positive population skews toward gay white males, while in East Palo Alto, minorities and intravenous drug users predominate.

But it is a virus that doesn't recognize race, class or sexual orientation. Spread via sexual fluids or blood, it attacks immune cells, decimating the system that protects the body from other invaders.

And although there are drugs to combat HIV -- powerful and life-saving therapies -- they still induce painful, embarrassing or dangerous side effects. In addition, the drugs only slow the progression of the disease. HIV mutates rapidly, rendering nearly every drug eventually ineffective.

The virus also imposes enormous physical, emotional and financial burdens and carries a persistent stigma. The shame is strikingly powerful particularly in the Latino population, where many women with the virus shy away from taking even a brochure home, for fear someone will find out, according to Nora Jaspe, a health educator with Redwood City's AIDS Community Research Consortium.

Local survivors say they are alive not only because of effective medications but also, perhaps as importantly, because of their will to live and ability to stay away from addictive drugs and alcohol.

Here are a few of their stories:


Charles Adams, 48, Palo Alto

If you search the Internet for information on AIDS in Santa Clara County, you'll come across Charles Adams' name and the address of the north Palo Alto home he shares with his partner, a longtime Palo Alto businessman.

Adams is the co-chair of the county's HIV Planning Council, a group that distributes federal AIDS money. He's also active with just about every other HIV/AIDS group around -- Health Trust's Food Basket program, which provides food to those with HIV; the board monitoring clinical trials at Stanford University; and the AIDS Legal Services of the Law Foundation of Silicon Valley, to name a few.

"Having my partner has enabled me to help," Adams said. "To me, (HIV) is just part of everyday life, and it's easy to talk about. I'm really lucky I'm in such a supportive environment."

Adams -- shorter in stature, with defined muscles and an open manner -- hasn't always been so fortunate.

Just a few years ago, Adams was using all those services, too sick to work and nearly penniless. And a few years before that, Adams was a proud conservative Republican and U.S. Army officer.

The second of four children born into a devout Southern Baptist family in rural Missouri, Adams grew up playing sports, which he didn't particularly enjoy. He dreamed of attending West Point Academy.

From a young age he knew he was gay and even tried to tell his parents. In response, they guided him toward religion and more sports, he said. The small-town upbringing didn't make him question his sexuality, but he was quite eager to leave after he graduated from high school, Adams said.

"I never gave being gay a second thought. . . . It was just part of life. It wasn't like I flaunted (it). I never drank or did drugs or smoked."


Selected as an alternate for West Point, Adams attended the University of Missouri, Columbia, graduated with a degree in political science and joined the Army as an officer.

He loved it -- the routine and discipline, the diversity and travel. HIV certainly wasn't on his mind.

"We'd all read about something going on (on) the coast. How did that affect me?" Adams said.

It did though. Adams got sick in 1983. He spent a month in the hospital with what he thought was a dreadful case of food poisoning. Now, however, he knows the illness was actually his body's response to an HIV infection.

Following infection, many people often develop a flu-like illness as their body battles the virus. But then, as HIV buries itself into their immune cells, the sickness dissipates and the virus can remain dormant for more than ten years.

Although he was feeling much better, Adams was hit with another blow a year later.

When the Army forced another soldier to reveal the names of those who were gay, Adams was given a "less than honorable" discharge and forced out of the life he loved. He returned to Missouri.

"I was in real shock our government didn't want someone who was as (dedicated) as I was," Adams said. His political views took a sharp turn to the left.

In 1987, HIV tests came out. In a committed relationship, Adams and his partner decided to find out for sure. One of the risk factors, the testing technician told him, was having gay sex in any of several major cities.

"I'd had sex in almost all of them. . . . By then I knew -- I knew HIV was possible."

Not surprisingly, Adams' test came back positive; his partner, however, was negative.

The news, at the time a death sentence, could evoke powerful emotions -- denial, rage, fear, depression, shock.

Adams, however, took the news in stride.

"I wasn't scared. You have to be responsible for your own choices," he said.

Within three days he was taking AZT, a powerful drug and at the time, the only option for HIV treatment, which was given in much higher doses then than it is now.

"I was really, really tired. I threw up a lot. It was really nasty," Adams said.

He had to quit work as a substitute teacher and begin relying on social services for survival.

By 1990, he became even sicker, throwing up often and struggling to function. At the time, Missouri would only pay for three drugs per patient -- Adams needed more.

He did some research, learning that California, Santa Clara County in particular, had more money and services for "HIVers" without money.

So after a few detours, Adams and his then partner moved to San Jose.

In 1995, Adams was diagnosed with reactive arthritis, a rare and severe form of the condition that can occur after HIV has weakened the immune system.

Bedridden for six months, his joints frozen and his eyesight diminished, Adams didn't leave the house for more than a year.

Adams calls the time "a really weird period."

"I've never been the type to get depressed about anything. I never felt sorry for myself. I just thought, 'I just don't want to live, if this is the way it's going to be.'"

Then, gradually, life got better.

Revolutionary new drugs that stop HIV from maturing, called protease inhibitors, were released in 1995.

"Without them, I probably would have died. ... (They) made all the difference in the world," Adams said.

He learned to walk again and figured out how to write using fat pens.

And he met his current partner.

"The reason I liked him so much was he asked, right away, 'What is your status?" Adams said. "There is this big 'Don't ask, don't tell' policy in the gay community."

Adams' partner is negative.

Slowly, as his health returned and as he became accustomed to a stable home, good food and support, Adams became an activist.

"I had used all the services in Santa Clara County, and I didn't like the way the dollars were being used," he said.

"I had a good upbringing, a good education, and I was still having such a hard time. . . . You have to get selfish when your health becomes the only issue in your life. Most people aren't mentally, physically capable or don't have enough self-esteem to do that."

Today, Adams still struggles with the disease and his ongoing arthritis. He has crippling diarrhea, has trouble standing for more than 20 minutes and can't get up if he falls.

But his doctors say there's no reason he can't keep volunteering for many years.

"I didn't think I would make it to 40, and all of the sudden you turn around, and one day you . . . have a life."


Carlton "Collie" Pierce, 55, and David Lewis, 51, East Palo Alto

Collie Pierce is HIV positive; David Lewis is not. Pierce has glasses, a pocked face and a single golden earring. Lewis is imposing, with a trademark mustache and graying hair. Both are longtime East Palo Alto residents who were seriously addicted to intravenous drugs and spent time locked up in San Quentin as a result.

And now, they're both working to help others in the grasp of drugs escape. Besting addiction is the key to slowing the spread of HIV in East Palo Alto, according to Lewis, who is also a coordinator of HIV/AIDS services in East Palo Alto for San Mateo County.

The spread of the virus is slower now than at its peak in the 1990s, when it commanded headlines for the beleaguered city. Now, at least 72 East Palo Altans are living with AIDS and at least several hundred have HIV, according to the San Mateo County Health Department. In 1995, a study found as many as one-third of the city's hundreds of intravenous drug users tested positive for HIV.

Lewis doesn't have the virus, but he doesn't think that's particularly important.

"In our community, it doesn't really matter," he said.

Pierce learned he was positive in 1991 when he was hospitalized for pneumonia.

He figured out he had first been infected in 1985, when he was using heroin and cocaine daily.

"Just like so many other people, I didn't know it," Pierce said. "It's so scary that they go on living normal lives ... (sleeping with) multiple partners. ... I was one of those people."

"My attitude was it would not and it could not happen to me. When I found out, I went on a death mission."

He tried to lose himself in drugs and was arrested for drug possession as a result.

His return trip to San Quentin, with HIV, was different, Pierce said. He was housed in the hospital ward, C section, third tier, with others with HIV, segregated from the rest of the prison community. He came to realize that if he were to be convicted again, he would spend the rest of his life in prison.

Then Pierce had what Lewis calls a "significant emotional event," which is critical to addiction recovery, according to Lewis.

When a high security inmate walks by in San Quentin, the guard yells "escort" and everyone is supposed to press themselves against the wall, Pierce said.

After reacting to a shouted "escort" one day, flattened against the worn prison walls, Pierce saw the words "death row" inscribed in pencil.

"For me, C section, third tier with HIV positive (people) was like death row. . . . I related to that (inscription)," Pierce said.

"That was my last trip to prison. I made a commitment to do anything I could not to return."

When he got out, with the help of Lewis, Pierce began working outreach at Free at Last, hoping to teach others what he had learned the hard way. He's been clean and sober for 11 years.

"I try to be the best advocate I can. That's why I am so very open. People need to know," Pierce said. "It still goes on. You might not hear about it. But it still goes on; that's why they call it 'the quiet killer.' People are still spreading it; people are still dying."

Pierce himself has been fortunate. He hasn't taken an HIV drug since 1999 and feels fine. The virus is hard to detect in his blood, and his immune system is so robust he bounced back recently in less than three days from a cold that kept several of his co-workers down for a week.

Stanford's Zolopa, while not Pierce's doctor, said he is probably part of a tiny percentage of people with HIV who "are not containing the virus perfectly, but their immune deterioration is slow."

He will probably eventually need medicine, Zolopa said.

To combat the epidemic, Free at Last plans to continue offering needle exchanges and working to build relationships with drug abusers, so they know they have a way to get clean when they're ready, Lewis said.

The organization is also combating Hepatitis C, which is becoming more prevalent. Hep C is a virus, transmitted with dirty needles, that attacks the liver.

Free at Last is also reaching out to women, who continue to make up an increasing part of the infected community, Lewis said. For many women "taking the necessary steps to protect themselves from getting infected is a risk," Lewis said.


Stephanie Marshall, 38, Hilmar, Calif.

Hilmar is a small town in the Central Valley, a few miles south of Turlock. Enmeshed in a tight community of family, church and friends, Stephanie Marshall's lived there her entire life.

Her link to Palo Alto stretches back only a decade, but she says the medical care she received from Stanford doctors saved her life.

Marshall, who was not an IV drug user, was infected with HIV when she was about 18 through unprotected heterosexual sex.

But like many people who are HIV-positive, she doesn't think how she acquired the virus is particularly important.

"We get this illness because of choices we made. ... We have to stand up and take responsibility," Marshall said. "We choose not to use protection. It's nobody's fault but our own. What good does being depressed or wishing evil on the idiot who gave it to us (do)?"

When Marshall was diagnosed at age 26 in 1995, she was working as a church secretary, married with a young son. Both her husband and son tested HIV negative. Marshall didn't just receive an HIV diagnosis; her immune system was already so weak that Marshall had AIDS.

"I knew nothing about AIDS. We don't have a large homosexual community. I didn't know anybody who had it. It just wasn't in my radar," Marshall said.

She quickly learned.

"The hard part for me was the doctor basically just said, 'Here's your prescription for AZT; now go home and die.'"

Self-described as "sassy," dying wasn't in Marshall's plans.

She refused to take AZT, however. Why take a drug that would make her so sick?

And as she got sicker, she decided to let everyone in the community know. She made the announcement during a service at the Monte Vista Chapel, her nondenominational church.

"The doctors got up and explained how you get it and how you don't get it. The elders laid hands on me," Marshall said.

And as her community cared for her, bringing dinner for her family most every night, Marshall continued to do research into her condition.

Then she fell in with a group that didn't believe HIV caused AIDS.

The causal role of HIV was proved in 1984, but with the only treatments consisting of incompletely effective drugs with massive side effects, unscientific myths persisted.

Marshall went to Santa Cruz for a bit to live with an aunt. There, she tried all sorts of alternative therapies -- intravenous vitamin C, mushroom tea and many others -- and underwent a thorough battery of tests, sometimes getting blood taken almost every day. Nothing capable of causing her symptoms, other than HIV, could be found.

Marshall began to accept the virus was responsible for her illness.

Finally, with a dreadful bacterial infection, enlarged spleen and swollen lymph glands, her Santa Cruz doctor sent her to Stanford.

She met Zolopa in 1997. At the time, she weighed only 90 pounds and was wasting away, Zolopa said.

He asked why she wasn't taking AZT, Marshall recalled. Marshall explained she didn't want to take such a harmful drug. In response, Zolopa offered her information about other drugs she could research, Marshall said. She hadn't known there were other drugs available.

"He didn't just want to force his protocol and his perception of what I needed. (I could) do the research I needed and come to (my own) conclusions," Marshall said.

Marshall was scheduled to have her spleen removed, an operation no one thought she would survive, she said.

Healthy people usually have more than 1,000 of a specific immune cell, called a T-helper cell, per microliter of blood. Marshall, at her lowest, had only three. An individual has AIDS if his or her T-cell count slips below 200.

Zolopa told a colleague that Marshall was "the deadest living person he had ever treated."

Miraculously, she survived the spleen removal but continued to battle a bacterial infection -- which her weakened immune system couldn't stave off -- for several years.

Now, Marshall drives to Palo Alto only four times a year. Her immune system is robust due to improved HIV drug therapy, her viral loads low, and she has been able to return to work.

"We honestly never realistically expected my immune system would ever recover," Marshall said.

Marshall's son is grown now, and she was divorced last year. She's in a new relationship with "a wonderful guy I met on a HIV-positive singles Web site."

"We understand where we're both coming from. ... We have each others' back."


Robert Boone, 57, Palo Alto

Robert Boone, who asked that his real name not be used, lives and works in Palo Alto.

Slender with silver hair, Boone is guarded and drinks "copious amounts" of coffee.

Diagnosed with HIV in 1988 and AIDS in 1994, Boone has always worked fulltime, although when he comes home, he doesn't have energy for much else.

Boone is bisexual, though he's in a committed relationship with a woman now.

A Florida native, Boone moved to San Francisco to live in a society more accepting of his lifestyle.

For about 13 years, Boone said he was very promiscuous.

"Did I play safe? Obviously not safe enough," Boone said.

"In 1980, I decided it was time to grow up and be respectable," Boone said. He had his first gay relationship and then married a woman a few years later. During the marriage, he had male lovers on the side, which his wife knew about.

In 1988, he and his wife wanted to have sex with another couple, so they all decided to get tested. The others were negative; Boone tested positive.

"I definitely knew it was in the realm of possibility. Was I expecting it? Probably not," Boone said.

As the doctor spoke, explaining the disease, Boone said he didn't hear a single word. The doctor had to discuss the diagnosis with his wife.

"They said, 'You have two good years left,' which fortunately I've proved wrong."

Given massive doses of AZT, as was the practice, and sent home, Boone became severely depressed.

"I did the dumb thing of not trying to get treated for it," Boone said.

His marriage started to unravel.

"It put a real damper on our sex life, to say the least," Boone said. "I'm just as much at fault. But finally she said, 'I just can't deal with you being sick.'"

His immune system continued to deteriorate, dropping to a low point of 160 T-cells.

Nonetheless, Boone still worked 40 hours a week. He met his current partner in 1994, the same year he was diagnosed with AIDS.

"Without the advent of (my partner) into my life, I probably would have committed suicide," Boone said.

This time, he sought out medical treatment for depression.

"Things started to level out and then go upwards."

Boone jokes that he got his "green card to Palo Alto" in 1995.

Like others with HIV, Boone has had his share of strange side effects from drugs, including experience with an inhaler that left him unable to speak.

Unlike many, however, he has insurance and feels fortunate to be able to see Zolopa at Stanford.

"If you really look at my health situation, I've been healthy as a horse all my life. Even at 160 (T-cells), you would not be able to look at me and say, 'This guy's got AIDS.'"

Brown said he has a love/hate relationship with the drugs.

"Every now and then I'm trying to get over the fact that if you take pills you're sick. I'm not sick, but I take pills."

AIDS is like diabetes now, Boone said, something you can live with.

"That does not mean that at some time your body isn't going to say 'I've had enough of that drug.' That's the scary part ... and, and, and 'Is this the beginning of the end?'"

Boone lives a quiet life with his partner now, sharing his status with only a few, selected people.

"I've given up the men in my life," Boone joked.

Boone is slow to preach or judge others' behavior.

"I told my mom, 'It doesn't matter how I've got it, the fact is, I've got it.' ... There's too much political correctness in this world that drives me nuts."

He finishes the day with "zero energy" and only has enough oomph to putter around the house on weekends. But he, unlike many, many of his friends, is still alive.


Source: http://www.paloaltoonline.com/news/show_story.php?id=4800