Long-Term Non-Progressors & Personal HIV Stories
Life in the HIV-positive 'elite'
Immune system capable of controling virus in a few cases
By JAMES RICCI
Los Angeles Times July 14, 2006
SAN FRANCISCO - Matt Traywick's personal life has been a treatise on how to contract acquired immune deficiency syndrome.
A gay man, he'd been ''very sexually active'' in San Francisco in the late 1970s, and tended toward unprotected encounters. Then he entered a long-term monogamous relationship, and after he lost both it and his job as a computer specialist, he sank into a life of hard revelry and so much intravenous methamphetamine use that he wound up homeless on the streets of the city's Tenderloin district.
''I always knew I would be HIV-positive,'' Traywick recalled. ''I hit all the major risk factors. It seemed there was no way I would have been negative. When I tested positive, my doctor cried and I didn't. Walking home, I wondered if there was something psychologically broken in me because, for some reason, I wasn't worried.''
His nonchalance has turned out to be justified.
Traywick was diagnosed 21 years ago and has been healthy ever since, despite never having taken anti-HIV medications.
Antibody tests demonstrate conclusively that he harbors the virus. But his immune system has controlled it so effectively that repeated blood assays have never shown a detectable level of the invader, even though Traywick occasionally uses speed and engages in unprotected sex.
A graying, rumpled man of 46, Traywick said he has ''spent a lot of time trying to figure out why I was a survivor. There's got to be a reason some people are chosen not to die.''
No idea why|
In the argot of AIDS research, Traywick is an ''elite controller.''
Elites are extremely rare, numbering about 2,000, and accounting for an estimated 1/3 of 1 percent of known HIV-positive people. They and ''viremic controllers'' -- healthy infected people whose immune systems keep the virus at low, although detectable, levels in the blood without drugs -- are of keen interest to AIDS researchers.
''I would say we still don't have the faintest idea why these people are doing as well as they are,'' said Harvard professor Dr. Bruce Walker, director of the Partners AIDS Research Center at Massachusetts General Hospital. ''Achieving the state that these guys have reached in their bodies -- if we could do that through some intervention, we would solve the AIDS epidemic.''
Being a long-term controller is not an unalloyed blessing, as Kai Brothers' journey illustrates.
Brothers, 43, a computer technician in San Francisco, got his first indication something was amiss in 1987. A frequent blood donor, he received a certified letter from his blood bank stating that someone had donated HIV-tainted blood and asking him to be tested.
Brothers couldn't respond. As a gay man, he knew he was in a high-risk group. Eventually he had himself tested but couldn't face the results. In 1989 he had himself retested, confirming his suspicions.
''I deep-down knew,'' he said. ''There was a heavy feeling but not a surprise or shock. There was fear: 'Am I getting sick? How long will it take before this time bomb went off?'''
Not knowing his future, he quit his job and cashed in his 401(k) account to travel in Europe. On his return, he learned his infection-fighting T-cells -- HIV's target -- had dipped slightly below normal, and his doctor wrote him a prescription for AZT, the first effective HIV drug but one with side effects.
''I decided I was not going to get it filled,'' Brothers recalled. ''Something instinctively told me not to. I decided to wait it out.''
Although his T-cells occasionally dipped, he also declined to use the effective multi-drug HIV cocktail when it became available in 1996. Brothers took to practicing safe sex and listening to his body when it requested food or rest or exercise.
While the AIDS epidemic roared through San Francisco's gay community, killing his partner and several close friends, Brothers escaped.
''But it was a bittersweet feeling,'' he said. ''It's hard to call yourself a survivor when you've been through so much devastation, so profoundly affected by loss and grief. Isolated was definitely something I felt at the end of the '90s. I used to go to support groups and hear what everybody else was dealing with, having AIDS and opportunistic infections. It was uncomfortable because a lot of them were upset or angry or frustrated. I couldn't identify with them, and I couldn't identify with those who were HIV-negative.''
Feelings of isolation are common among controllers, said Dr. Florencia Pereyra of the Partners AIDS Research Center.
She established a support group for controllers in Boston and found that ''because they're not on medication and don't have high mortality rates, they feel apart from the rest of the HIV community.''
Another common sentiment among them was a desire to be studied.
''The question seems to come back to them all the time,'' said Pereyra: ''Why me? What's so special about me?''
Researchers are probing the body's ''innate'' immune system, trying to discern if controllers harbor a defective form of the virus and undertaking a study of hundreds of controllers to learn if there is anything genetically unique about them.
Human beings have two immune systems, the innate and the ''adaptive.'' The innate system is a general response to any incoming pathogen, and kicks in almost immediately. Its component cells, including some known as ''natural killer cells,'' dismantle viruses, kill early cancer cells and eliminate foreign bacteria.
The adaptive system, which is dependent on infection-fighting T-cells and antiviral antibodies, is more finely tuned and needs to identify an invader precisely before going into action, a process that takes days or weeks. The bulk of HIV research has centered on the adaptive system.
Researchers at the University of California-San Francisco, have assembled a group of 50 elite controllers (including Traywick), and research on them has produced an intriguing discovery.
About half of the elites control the virus, as expected, through a powerful response by T-cells. The other half show no such T-cell response.
''The 25 people in our cohort who have no T-cell reaction can provide insight into whole new ways of thinking,'' says Dr. Steven Deeks, an HIV researcher at UC-San Francisco. ''There are 25 guys who have no reason for controlling the virus.''
Because their adaptive immune systems appear to play little or no part in controlling the virus, they are prime subjects for investigation into the innate immune system.
Since 1984, Dr. Jay Levy, director of the Laboratory for Tumor and AIDS Virus Research at UC-San Francisco and one of the first to isolate HIV, has focused on the innate immune system and its unique infection-fighting tools.
In the controllers he has tested, Levy found an effective antiviral protein secreted by certain innate immune system cells. Over the last two decades, he and his team have searched through the thousands of proteins these cells make to identify the antiviral protein. They've narrowed the number to about 80, but they need to winnow it further.
They've also been trying to identify the gene that causes controllers' cells to express the antiviral protein. Of the body's 37,000 genes, Levy's team identified eight that look promising; they expect to identify five or six more.
Eventually, they'll introduce the most promising genes into human cells and look for the antiviral protein activity.
Levy is also studying another tool of the innate immune system -- cells that produce virus-crippling interferon. He has found that controllers have higher numbers of these cells than even healthy HIV-negative people.
Essentially, controllers show that the human immune system is capable of containing HIV naturally, Levy said. ''This has been a long time coming, but in my opinion we can look forward to long-term survival without toxic drugs.''
While researchers try to explain his uniqueness, Matt Traywick is putting his life back together.
After two years of homelessness, which included a brutal beating that hospitalized him for two months, he is living in Catholic Charities-supported housing. He said he still uses methamphetamine ''only every couple of months'' and remains sexually active.
''I don't always keep myself safe, but I'd never put someone else at risk,'' he said. ''I always disclose. I've never been so high that I didn't remember or think to disclose.''
Traywick recently posted a resume on the Internet and has drawn responses from potential employers.
''For the first time in many years, it looks promising,'' he said.
Traywick knows he's got to return to a productive life in order to save for retirement.
''I didn't think I'd make it to 30, much less 46,'' he said. ''I never dreamed I'd retire. Now it looks like I might. That's the ultimate joke that God plays on us guys.''
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THE NEW FACE OF HIV IS REFLECTED
IN NEW JERSEYANS LIVING WITH THE DISEASE
Sunday, July 16, 2006
BY MEG NUGENT
Newark Star-Ledger Staff
A quarter-century after AIDS began its brutal global rampage, there's a new generation of patients living for years with a virus that once meant swift death.
"If they take their medications, people can live the rest of their lives with it and die of other, unrelated causes," said physician Stephen Smith, chief of the department of infectious diseases at Saint Michael's Medical Center in Newark.
He calls it "the new face of HIV."
Since AIDS was first identified in June 1981, more than half a million people in the United States have died from it and more than 1 million are estimated to be living with HIV, the virus that causes AIDS.
In New Jersey, the disease killed 34,270 people before the end of 2005. An estimated 32,885 people in the state are now living with HIV or AIDS.
But while many patients are thriving for 20 or more years after being diagnosed with the human immunodeficiency virus, some also are facing serious side effects -- including lipodystrophy, a disturbance in the way the body handles fat that can result in disfigurement -- from long-term use of potent anti-HIV medications.
Here are the stories of five New Jersey people now living with HIV/AIDS.
Bob Armstrong, 54, Morris County
"Back in 1981-1996, when you had AIDS, it was like a death sentence. The HIV coordinator told me I was going to die and to prepare," recalled Armstrong, who was diagnosed in 1995 after being infected through unprotected sex with another gay man.
Armstrong is considered to have full-blown AIDS, in part because his T-cells, white blood cells that regulate the body's immune system, dropped far below medically acceptable levels.
Today, however, Armstrong, who lives with his male partner (not HIV-positive) of 28 years, hardly fits the old image of the emaciated, fragile AIDS patient. His color and weight are good and he smiles easily.
But he has many health issues, including side effects from years of taking aggressive HIV medications.
"There are days I'm so sick, I have to be in bed from the medications," said Armstrong, who's on full disability and once worked as an educator and practitioner of Seimei, a Japanese healing technique. "It's difficult to take pills, knowing they're going to make you sick. But you have to see the larger picture and know they're saving your life."
Some of the drugs raised his cholesterol and triglyceride levels to the point that Armstrong, with a family history of cardiovascular disease, suffered a heart attack. He now follows an exercise program at a local cardiac rehab center and is careful about his diet. "I feel so much better. I'm getting my heart back in shape."
His other side effects include peripheral neuropathy, a condition that causes numb, tingly and painful sensations in his feet.
He also has lipodystrophy, which affects up to 50 percent of patients on HIV medications. Armstrong doesn't like the way his lipodystrophy "compromises" his appearance, giving him a larger belly and some "wasting," or thinning, in his arms and legs. "You want to look sexy. It's a drag," he said.
Despite his health problems, Armstrong said, having HIV/AIDS "helped me appreciate life more. I can appreciate being alive. Sometimes, I feel like I have a normal life but I have to work at it."
He's also dealing with knowing his disease has developed resistance to some of his medications. "People can become more resistant to the drugs and they no longer work and, then, you die.
"A lot of people die."
Brenda Boone, 56, Newark
Ten years after she was diagnosed HIV-positive in 1983, Boone was wondering why she wasn't getting sick from the virus while scores of her friends were already dead.
"People were dying all around me and I was waiting for my turn," said Boone, who thinks she got infected through unprotected sex or sharing needles when she was a drug addict. "What was going on?"
Her doctor explained Boone is among a small percentage of "nonprogressors," meaning they are HIV-positive but the virus does not attack their immune systems.
"I was elated by that. Knowing I'm a nonprogressor, I can appreciate I have some time. I stop looking at time I might not have and be grateful for the time I do have," said Boone. "There are days I don't even remember I'm HIV-positive. I'm a nonprogressor, so, I'll live."
That's not to say Boone can forget about being HIV-positive, even though she's never needed medications. Boone still gets checked every three months to make sure her body's level of T-cells is high enough to do their job.
She also isn't in perfect health. Boone is being treated for a slow-growing form of breast cancer and is a cervical cancer survivor. She has hepatitis C, which she attributes to needle sharing, and has battled a lifelong case of anemia.
She said her past includes years of homelessness, two brutal rapes and serious depression that led to a couple of suicide attempts.
Today, Boone has her own apartment, works full time as an HIV prevention counselor at Isaiah House in East Orange, and is an active member of her church. She decided to be celibate years ago, partly because of the stigma she said continues to haunt those with the virus.
"I have an issue with rejection," she said. Still, she has chosen to be open about being HIV-positive. "I will not let anybody hold my past or my status against me.
"God wakes me up every day, and I'm all right with being HIV-positive. There are so many more important things I have to do than live in the shadows."
Rick Webster, 16, Tewksbury
He just completed his sophomore year of high school, performs in a rap group, plays basketball, wants to be an actor and likes to break-dance.
"I have the virus," Webster said, "but I try not to think about it. I don't want it to ruin my day. It's a priority, but I want to live like a normal person."
Right now, he's feeling quite normal because he's not on any medication for his HIV, which he contracted through his birth mother. Since infancy, Webster has lived with his adoptive parents, who were told he wouldn't live beyond 5 or 6.
At one point, Webster was swallowing 11 pills each day. "It was a hassle," he said. So sometimes he would hide pills instead of taking them. But he stopped when he realized, "It is what it is and I need to take them."
Webster was taken off HIV medication about two years ago because it caused kidney stones. His medical team closely follows his health and will not put him back on medication as long as his viral load, the amount of HIV virus in his blood, and his T-cells remain at acceptable levels.
"We don't usually have cases that have done as well as he does," said James Oleske, an AIDS researcher at the University of Medicine and Dentistry of New Jersey-New Jersey Medical School, in Newark. He also acknowledged Webster likely will resume taking HIV medication in the future. "The virus has the ability to mutate and change, and become resistant."
Webster's adoptive mother, Kathie, said the family has always been open about her son's HIV-positive status. The teen says his peers always have been supportive. "No one really talks about it. Every kid I hung out with in kindergarten is still my good friend."
Webster's not currently dating, but he has had girlfriends. "I have always told them the truth" about being HIV-positive. He also said he is abstinent.
Webster hasn't always enjoyed the same level of acceptance from some of his peers' parents.
"Parents are not really educated. They didn't know basically about the disease," he said. Webster summed up some parental attitudes as, "You got it, you die."
Elizabeth Perez, 52, Hudson County
She used to wear her hair long to conceal her "buffalo hump," a 4-pound mass of fat on the back of her neck, the result of the lipodystrophy she developed during her 23-year battle with HIV and AIDS.
Although Perez had the hump surgically removed in 2004, she didn't cut her hair short until three months ago. "I thought it (the hump) was going to grow back," said the Cuban native, who was diagnosed in 1990 and traces her infection to 1987, after she divorced and became involved with a boyfriend who she later discovered was bisexual and had AIDS.
Perez, whose T-cell levels fell low enough to be considered a full-blown AIDS patient, takes four pills for the disease and an additional 20 each day to manage side effects and other medical conditions, such as high cholesterol, high tryiglycerides, sleeplessness, nightmares, hypertension, depression and anxiety.
"Living with the virus for so long, your body takes a big toll from the medications and you get tired very easily," Perez said. "I am so tired. I come home, get comfortable and lie down and watch TV until it's time to have something to eat. I take my meds and I go to sleep.
"What keeps me going is anger," said Perez, who has a grown son. "Anger at seeing people getting infected when there is no need for it."
She said she appreciates every day, but she thinks about what might have been. "I wonder what it would have been like to have a normal life -- to be a housewife without HIV, what it would have been like to have family vacations with a husband and child." Perez said she chose not to date again after she learned of her diagnosis.
She finds great purpose in her part-time job as a consumer advocate for the Hyacinth AIDS Foundation. "If God has given me this long time to be healthy and alive for a reason, the reason has been to teach and help others not get infected."
Blair Frost, 72, of Maplewood
He was infected with HIV in 1986, the result of "bisexual activities."
Frost believes it is important to stress his bisexuality "because more women are contracting HIV and that should be understood."
"Women who have partners, who may be going out on them and tasting other worlds, may bring the HIV virus back to those women," said Frost, a retiree from the travel industry and a founding member of the New Jersey Association on HIV Over Fifty.
He says he didn't take responsibility for his own health until he quit drinking, for the second time, in 1994 and sought help through Alcoholics Anonymous. "Believe me, I wouldn't be alive today if it hadn't been for my spiritual rebirth in AA," Frost said.
"I was seeing an HIV specialist within six months of joining AA, knowing that if I didn't take care of myself, I wouldn't be around."
Frost's T-cell levels are low enough to make him a full-blown AIDS patient.
But he enjoys relatively good health, he said, because of several factors: "My optimistic attitude, helping others, connection to God. And being the best survivor you can be. I never miss a pill."
At one time, Frost was taking 18 HIV pills a day. Then new and more effective drugs reduced his daily intake to three. He takes calcium for bone health, a multivitamin, and omega-3 to combat high cholesterol, a side effect of his HIV medications.
He also has the telltale signs of lipodystrophy around his abdomen, as well as some wasting in his arms and legs.
"All the other pills I take are for the pain," said Frost, who gets around with a cane and blames a bum knee, bad back and hip on a combination of aging, arthritis and his years as an avid runner.
He considers himself a blessed man. "I have a wonderful life. I have friends. They sustain me to go on in the fight against the spread of HIV in the community."