Aging with AIDS
Adults with HIV/AIDS are living longer lives, but face a new challenge.
In 1983, Steve Bolan spent his 40th birthday getting a physical. Although the movie advertising executive seemed healthy, he was worried about a mysterious illness that was making many of his friends seriously sick.
Steve received a clean bill of health, except for a strange but benign yeast infection normally seen only in infants. When the infection persisted for a year, his doctor finally diagnosed him with AIDS-related complex, or ARC, a term no longer in use to describe people who have minor symptoms caused by infection with Human Immunodeficiency Virus (HIV).
“I knew it wasn’t good news, but no one really understood what it meant,” says Steve, who was eventually diagnosed with full-blown Acquired Immunodeficiency Syndrome, or AIDS.
“More and more people around me were getting sick and dying, but all my doctor could say was ‘let’s wait and see.’ That was the horrible part—waiting for him to tell me my time was up.”
It’s been 27 years, and Steve is still waiting. Now 67, he is one of a steadily increasing number of men and women who are experiencing something once considered unthinkable: They are growing old with AIDS.
Originally considered a disease of the young, AIDS and the virus that causes it have been increasingly afflicting an older population. Whereas individuals in their 20s and 30s once made up the vast majority of the population with HIV/AIDS, nearly 30 percent of the 1.1 million people living with HIV/AIDS in the United States today are age 50 and above.
By 2015, more than half of the people living with HIV in the U.S. will be over 50. The statistic includes those who havelived with the virus for many years, those who are just learning about their HIV status after previously being infected, and those newly infected, according to the Centers for Disease Control and Prevention (CDC).
Steve and others like him are living longer lives thanks to the advent of powerful drugs that keep the virus at bay. But they also now face a cruel irony: The same medications that saved them may also be contributing to several chronic illnesses that challenge the prevailing view of AIDS as a manageable condition.
Steve, whose diagnosis and treatment have run roughly parallel to the evolution of drugs that fight the disease, now suffers from diabetes, heart disease, and liver problems that may, in part, be induced by these medications.
“My doctor has been trying to convince me that what I should worry about now is heart disease or diabetes, not AIDS,” says Steve.
The history of the AIDS epidemic is generally divided into two periods: before and after 1996, when the modern three-drug treatment plan known as HAART, for “highly active antiretroviral therapy,” came into widespread use.
HAART was a medical breakthrough. Today, far fewer people die of AIDS in the United States, although the number of new infections (approximately 56,000 annually) has remained steady for several years. The number of men and women living with HIV in the United States today is twice the number of those who have died since the first case was reported in 1981.
“The introduction of HAART was a revolution,” says W. David Hardy, MD, director of the Division of Infectious Diseases and Associate Professor of Medicine at Cedars-Sinai. “It made a disease that had ended the lives of many young men and women become less fatal.”
The three-drug regimen is so effective that the estimated life expectancy of a 25-year-old man or woman who is diagnosed with HIV before developing signs or symptoms of illness—and is promptly put on these medications—is virtually identical to that of the general population, according to a long-term observational study from the Netherlands that was presented last year at the Conference on Retroviruses and Opportunistic Infections.
“In 1996, we started patting ourselves on the back, thinking we had taken care of the problem: People weren’t dying anymore and they weren’t getting sick,” Dr. Hardy says. “We thought our patients’ immune systems were returning to normal and that everyone would live happily ever after.”
Over the last decade, however, as more and more people with HIV have entered middle and older age, a darker truth has begun to emerge: Although people on antiretroviral drugs are living longer, they are increasingly getting the types of chronic conditions that normally afflict a much older population, such as osteoporosis, arthritis, cancer, and heart disease. Cognitive decline is another serious challenge.
The immune system itself is at the root of much of the problem. Perpetually activated by the presence of HIV, the immune system launches an inflammatory response to fight the virus. Over time, chronic inflammation causes plaque to form in the arteries, which worsens many conditions associated with old age, such as cardiovascular and kidney disease. Chronic inflammation also takes a toll on a person’s organs, causing irreversible damage to the liver, kidneys, heart, and brain.
The drugs also can contribute to these clinical conditions, however. Protease inhibitors, one of the five classes of medications currently used to treat HIV infection, have been associated with a variety of metabolic problems, including a rise in cholesterol, which increases the risk for heart attack and stroke, and a decrease in glucose utilization, which causes diabetes. Some protease inhibitors, along with nucleoside analogues—another class of medications used to treat HIV— seem to cause osteoporosis.
The brain appears to be particularly vulnerable to the virus and the medications that treat it. The same protease inhibitors that cause high cholesterol and a buildup of plaque in the coronary arteries also tend to block brain microvessels, leading to cognitive impairment. And because protease inhibitor medications don’t penetrate the blood-brain barrier well, proteins produced by the virus concentrate in the brain. Many of these proteins are toxic to brain cells and trigger cell death, which also impairs brain function.
“What we’re now seeing in treated patients with HIV is minor neurocognitive disorders, which people describe as ‘brain fog,’” says H. Aaron Aronow, MD, a neurovirologist at Cedars-Sinai who treats patients with HIV. “They forget where they put things, they have to reread a lot, they lose their train of thought in mid-sentence, but they can generally still take care of themselves.”
Although HAART reduced the incidence of AIDS dementia complex— a neuropsychiatric disorder that was commonly seen in late-stage infection—the overall prevalence of the condition has increased because patients with HIV and AIDS are living so much longer. HIV-positive patients should not ignore even mild losses of memory and concentration, according to Dr. Hardy, because these processes could signal the beginning of serious decline.
An avid reader of mystery novels, Steve has always felt more comfortable with a book in his hand. Although he still likes to read, he often has to reread pages to remember where he left off. And he sometimes struggles to find the right word. “I wonder how much of it is simply aging and how much is AIDS,” he says.
“As we age, our immune system slowly and progressively wears out,” Dr. Hardy says. “We see this in people who do not have HIV—getting shingles, for example. But people with HIV are entering the aging process with weakened immune systems. They show signs of premature aging, getting age-related illnesses in their 50s and 60s instead of their 70s and 80s. What will happen to these people as they age?”
This is a question that is finally garnering attention. The National Institutes of Health (NIH) are now funding several studies focusing on the challenges of an aging HIV population, including the increased risk of cardiovascular disease, the effect of menopause-induced hormonal changes, and the decline of memory and cognition.
The NIH is also paying special attention to minority populations who are aging with HIV. Enrique Lopez, PsyD, a clinical neuropsychologist at Cedars-Sinai, recently received an NIH grant to study neurocognitive disorders in Spanish-speaking people with more advanced-stage HIV.
The son of a small-town Michigan doctor who received patients in the basement of his own home, Steve moved to Los Angeles in his early 20s to start a job making movie trailers. Although he never discussed his sexuality with his parents, he describes his coming out as a painless experience.
“In those days, there was a mystique, a rebelliousness about being gay,” he says. “It felt cool, kind of underground.” With his full head of gray hair and tanned, freckled skin, Steve retains much of the boyish good looks of his youth, despite a stubborn thickness around his midsection. Casually dressed in a T-shirt and shorts, he has clearly outgrown the disco days of early-’80s West Hollywood. Today, he indulges in simple pleasures, such as long walks with his three dogs or late morning coffee with his partner of eight years, Colin Hadlow, 53.
Steve and Colin, who was diagnosed with AIDS in 1986, share a stylish home in a quiet Venice neighborhood. Sitting on their deck beside a cherimoya tree and stands of flowering bougainvillea, Steve soaks up the sun as he discusses what it has been like to live with a deadly disease for nearly 30 years.
When Steve was diagnosed with AIDS-related complex in 1984, doctors had very little to offer him. “I was told to eat well and stay well-rested,” he says. Then came AZT—the first antiretroviral drug that worked to suppress the virus. Steve began taking it in 1987, when the life expectancy of someone with AIDS was about six months. AZT was a difficult drug to take: It had a strict pill regimen that required a dose every four hours, even at 4 a.m., for which Steve had to set his alarm.
“Every time that alarm went off, it was like ‘beep, beep! You’ve got AIDS! You’ve got AIDS!’” he recalls. “It was a horrible, rude awakening every morning and you were lucky if you got back to sleep.”
After a few years, the drug stopped working because “the virus mutated around it,” Steve says. At the same time, it was beginning to deplete his white blood cells to dangerous levels. He started receiving daily injections of a drug called Neupogen® and went on scheduled “drug holidays” to counter the effects.
AZT took such a toll on Steve’s health that he finally had to stop the treatment in 1993. With no other treatment or cure to offer, Steve’s doctor grimly advised his patient to retire and go on a trip with the time he had left.
“I was sure I was going to die,” Steve recalls. “My only concern was that I wanted to go quickly.” And just when he had nearly lost all hope, the HAART revolution occurred.
“HAART came out just in the nick of time for me,” Steve says. “It truly saved my life.”
Steve now takes two pills a day to keep the HIV virus under control and 12 other pills to treat the various medical conditions he has developed as a result of the disease, the drugs that treat it, and the normal aging process. The medications fill an entire kitchen drawer and Steve spends about 15 minutes each night making sure he takes them at the right dosage and intervals.
Although Steve’s medications cost more than $42,000 a year, his insurance and Medicare copayments add up to $4,000. People who are not on Medicare or lack a good health insurance plan could be charged tens of thousands more.
Steve now suffers from diabetes and high cholesterol, chronic conditions that do not run in his family. In 2000, he had triple bypass surgery following a heart attack. And the fat layer around his middle is a common side effect of the medications and, some researchers believe, a sign of liver dysfunction.
“For years we focused our clinical and research efforts on understanding the HIV virus and its effect on the immune system,” says Dr. Hardy. “Today, the long-term effects of the disease on vital organs and potential organ failure are our most challenging areas.”
While organ failure has long been a concern for people with HIV, patients were excluded from organ transplants before 1999 because it was assumed they wouldn’t live long enough to benefit from them. Thanks to HAART, the NIH funded a study six years ago to determine how HIV-positive people with failing livers would fare with liver transplants.
Under the direction of Dr. Hardy, Fred Poordad, MD, and Nicholas Nissen, MD, Cedars-Sinai—one of only two hospitals in California participating in the study—has performed 11 liver transplants on HIV-positive patients since 2005. Nine patients are alive, and three are celebrating their sixth post-transplant anniversary this year, according to Dr. Hardy.
The transplant study was so successful that Cedars-Sinai is now screening HIV-positive persons in need of kidney and heart transplants. It also is developing a multidisciplinary HIV Care and Research Center that will coordinate specialized medical care such as organ transplants, cardiovascular, neurological, cancer, and other treatments for people with HIV. “There are very few medical centers in the region with Cedars-Sinai’s critical mass of expertise,” says Dr. Hardy.
When Steve first started speaking to college students about AIDS for the Being Alive advocacy group, it was easier to make a case for safer sex.
“We came in on walkers,” Steve says. “We were so gaunt and frail that we looked like death warmed over.”
Today, the speakers are older than they used to be, but they look so healthy that Steve fears they no longer have the same impact.
“The people we’re talking to think AIDS is no big deal,” he says. “I tell them: ‘Even though you think you can take a pill and be fine, you don’t want to spend your life coping with a disease when all you have to do is wear a condom.’”
Steve, who knew at least 100 people who have died of AIDS, is grateful he and Colin, who chairs Being Alive’s speaker’s bureau, have survived as long as they have with the disease.
Twenty-seven years after receiving his death sentence, Steve still worries that “every bruise is Kaposi’s sarcoma [a cancerous tumor of the cells that line blood vessels, often associated with AIDS].” But in recent years, his concerns have become more practical.
“When I was younger and working, I thought I was going to die soon, so I wasn’t worried about running out of money,” he says. “But thanks to the wonders of modern medicine, I now face the same uncertainties as other seniors: How long is our money going to last? If I live to be 75, that means I have eight more years. But what if I live longer? What if I make it to 80?” “I’m like every other senior except that I’ve been thinking about my mortality for 30 years,” Steve adds with a smile. “I’m not saying it’s any less frightening; it’s just that I’ve kind of gotten used to it.”