Women on protease ask: "Who is that in the mirror?"
"I'm the Elephant Man," Lesley Wasserman
tells me. "I'm not a human. I'm an animal." After a few months on a
saquinavir/AZT/3TC combo, the 46-year-old Santa Barbara,
California, PWA's body began to blow up...and up...and up. Today the
the self-conscious, five-foot-tall woman weighs in at
60 pounds above her normal 105. Her bust has swelled to size 42DD
from a 38C, and she can't roll over in bed without first sitting up.
Her back is in constant pain from hauling around so much weight.
Every week she gains up to two pounds, even though some days she
tries to eat as little as possible. "I'm not attractive anymore,"
Wasserman says. "I'm not interested in sex, and my body disgusts
me." She pauses in an effort to reassure herself that despite her
appearance, she's still the same person inside. "If it disgusts me,"
she continues, "it's definitely going to disgust someone else."
A year and a half into her protease regimen, Ann Birmingham (name
changed) was undetectable, had few side effects and considered
herself one lucky woman. Then the 28-year-old's body began its
strange metamorphosis. "I was a stick with boobs," she says. Her
waist barreled from 27 inches to 32. Her arms and legs shed their
fat, leaving her with veiny, skinny limbs. Her butt became a
muscleless sack of bone. The most striking change occurred in her
breasts, a 36C bursting to a 38D. "When I walked down the street,
you can be sure people weren't looking at my eyes," she says. "It
was psychologically pretty horrific. I didn't want to leave my
house. I didn't want to be seen by anyone."
Birmingham panicked. "At first I didn't attribute it to the
drugs. All I knew was that my body was freaking out. If I had not
been in contact with other women with HIV, I would have had no idea
what was going on," she says. "I would have thought I was going
crazy." After talking with her physician, she decided to stop her
saquinavir/d4T/ 3TC cocktail. Within a month, her body normalized.
She has, in a sense, deflated. While her breasts sag more than they
used to and her waist is still a few inches wider, there's no doubt
in her mind that the protease inhibitors caused these drastic
Welcome to the new "AIDS look." Faster than you can say
"triple-drug combination therapy," a slew of symptoms -- limb
wasting, truncal obesity, breast enlargement or depletion, thinning
of the skin, "buffalo humps" (accumulated fat across the shoulders),
lipomas (fat deposits) -- is being added to Kaposi's sarcoma and
corpse-like wasting in the HIVer's horror-house mirror. Although
this fat-redistribution syndrome is an equal-opportunity menace, its
effects tend to look more dramatic on the female frame.
Expanding waistlines are one thing; disfigurement is another.
Women with HIV, many of whom are already negotiating an emotional
minefield of shame, guilt and sexual insecurity, are now faced with
a new set of challenges. "These body changes are one more punishment
that reinforces the feeling that 'Obviously, I'm not supposed to be
in this body,'" says Karyl Draper, chair of the Los Angeles County
HIV Commission. "Just when we were starting to tackle the
psychological effects of HIV, these dramatic physical effects
surfaced." Add to that the lifelong pressure from society and the
self to stay thin. The fat-is-bad view is so omnipresent, says PWA
Mary Lucey, that when people saw women with wasting syndrome, the
response used to be: "You look great, you lost some weight." For
Lucey, such comments prove how deep the "you can never be too thin"
mentality is ingrained. The sad fact is, says Lucey, "She wasn't not
on a diet, she was dying."
Although they don't cause traditional HIV wasting, there is a
growing conviction among PWAs that protease inhibitors are causing
these new bizarre body changes. Many on the cocktails are having
other problems, too, including unusually high blood levels of
triglycerides, glucose and cholesterol. A handful of studies are
underway, but so far no one knows how extensive these problems are,
and the only evidence circulating in the scientific community is
anecdotal. As doctors scratch their heads, PWA Donna Haggerty, 58,
who says she looks and feels 12-months pregnant, avoids mirrors and
admits: "If I won the lottery, the first thing I'd do is get
liposuction." More than a few PWAs already have.
Michael Giordano, MD, director of the AIDS clinical trials unit
at Cornell University Medical College, says he first became aware of
these body composition abnormalities when he and a colleague watched
two female patients in hospital gowns walk down a hallway. Giordano
commented that from the rear, the women looked like men. "I remember
it very clearly. They had huge square waists and muscular legs."
Giordano is one of several researchers around the country
studying the causes and extent of this syndrome. Before last
September, when a Washington, DCbased think tank, the Forum for
Collaborative HIV Research, assembled doctors, patient advocates,
and reps from drug companies and the National Institutes of Health,
there had been no organized discussion or exchange of clinical
evidence. Says the Forum's executive director, David Barr, "Although
this is an area of research that's moving rapidly, as a patient
myself I'm concerned about what we don't know. The fact is, we don't
have a clue why this is going on."
Word of these symptoms first spread last summer when a witty
Crixivan user dubbed his or her fast and furious weight gain "Crix
belly" on an Internet chat line. (Crixivan, [indinavir] manufactured
by Merck Research Laboratories, is the most widely prescribed
protease inhibitor.) Since then, warnings about "buffalo hump" and
"protease paunch" have appeared with increasing frequency in AIDS
publications (see "A New Kind of Waisting," POZ, February
1998). According to Merck's director of clinical research, Randi
Leavitt, MD, the pharmaceutical is participating in several studies
of this syndrome. "We want to gather as much information as we can
in a systematic way," Leavitt says. "We need to get a handle on
what's going on. We don't understand the mechanism that's triggering
it." But while Crix belly may be the descriptor to name these body
composition changes, fat redistribution is by no means unique to
Crixivan. The other protease inhibitors appear to be causing similar
side effects, and the condition has been recently tagged with a new
medical moniker -- lipodystrophy, an abnormal distribution of fat.
February's Fifth Conference on Retroviruses and Opportunistic
Infections saw the first formal presentation of syndrome data. While
some doctors reported unusual fat accumulation in no or a low
percentage of their patients, others described an incidence as high
as 60 percent and noted the resulting potential for abandonment of
otherwise-beneficial treatment. These symptoms did not surface in
clinical trials, and some physicians and pharmaceutical reps suggest
they may be an HIV-related syndrome unmasked by longer life. But
activists beg to differ because there are many long-term survivors
who hadn't exhibited such side effects until the advent of protease
inhibitors. A stranger hypothesis: These metabolic changes may be
triggered by improvement in PWAs' immune systems. But the bottom
line, as John W. Mellors, MD, a leading researcher at the University
of Pittsburgh, told a press conference at the Chicago confab, is,
"We are in a period of ignorance about the prevalence of this
Until recently, Barr points out, many less informed doctors did
not know this syndrome existed or that it might be related to
protease inhibitors, and explained the symptoms as being related to
wasting syndrome. "I think a lot of doctors and patients don't know
that these side effects are occurring and that they may be due to
the drugs," Barr says. "For many people, this may just look like
another symptom of AIDS." When it comes to weight, doctors tend to
view any girth gained as a patient plus; they are even more grateful
to see falling viral loads and rising CD4 counts: That combination
is a bubble no one wants to burst. Mellors put it this way to
reporters in Chicago: "I won't speak to more cosmetically sensitive
areas, but in Pittsburgh there is no quiche or fluff, and if viral
levels are down, it's good enough."
Good enough for an AIDS bigwig, but not for 47-year-old Nora
Drake (name changed). When she went to her dermatologist to complain
about veins on her legs that looked like glued-on ropes, the doctor
said, "You have AIDS. You're wasting." She went to her gynecologist
with worries about her disappearing breasts ("I went from a
reasonable A-cup to looking like a couple of deflated balloons").
And then she went to an endocrinologist in near panic about the
softball-size "gross blob of fat" growing on the back of her neck.
"Nobody knew what was going on, and I was feeling grotesque," says
Drake. "The hump was getting bigger and bigger to the point that I
couldn't even bend my neck back. I never had anything remotely like
this until I went on protease inhibitors."
When Drake went to the library and did some research. Gathering
evidence from medical journals, she concluded -- as have some
clinicians -- that Cushing's syndrome was the likely culprit. This
condition, sparked by hyperactivity of the adrenal glands and high
levels of the hormone cortisol, causes upper-body obesity, fat
around the neck and thinning of the arms and legs. But when Drake
reported her diagnosis to her doctor, his response was
disappointing. Drake was missing the crucial factor that would link
her condition to Cushing's, a treatable syndrome: Her cortisol
levels were normal.
After bone scans, mammograms and countless tests to document
every little fat composition variation, Drake couldn't stand it any
longer. She had a biopsy of the tissue on her neck: It turned out to
be a benign fat deposit called a lipoma. Last November, a plastic
surgeon removed 60 percent of the hump -- a two-pound, yellow mass
of tissue. Five months later, it still hasn't grown back; whether it
will in the future has yet to be determined. Drake switched from
Crixivan/d4T/3TC to Viracept/Fortovase/d4T/3TC, not only because her
viral load shot up on Crixivan but also because the side effects
were much too disconcerting. She has since gained weight in her
thighs, her breasts are coming back a bit, and there's enough
padding on her butt to now sit comfortably. But others with this
strange syndrome who have switched or stopped protease therapy have
less luck. Lesley Wasserman, for instance, went off her saquinavir
cocktail and still continues to gain weight.
I am supposed to be a happy little camper because I'm on these
drugs and I'm not dead," says Drake, referring to Mellors' "quiche
and fluff" flippancy. "The attitude among some in the medical
community is that you should just be happy you have the pills. I'm
sorry, but I had a bony butt with a big stomach and a hump on my
back, and that's supposed to be acceptable?" These bizarre physical
changes are perceived as a purely aesthetic concern by some doctors,
and the discrepancy underscores a basic dilemma for PWAs. As many
try to stretch their psychic limbs to fit a suddenly expanding
future, quality of life becomes a critical issue for women with body
composition changes. Says Alexandra Levine, MD, a leading oncologist
at the University of Southern California, "Each patient should
determine with her doctor how important protease inhibitors are to
her overall care vs. how debilitating the side effects are."
But gauging how troublesome these gradual transformations can be
is difficult. That's why Dawn Averitt, founding director of Women's
Information Services and Exchange (WISE), notes that body
measurements should be a part of every physical checkup. She
recommends that in addition to height and weight, PWAs should urge
their physicians to measure their arms, thighs, stomach and chest.
While fat redistribution has yet to push a significant number of
women off the protease lifeboat, it may be a deterrent to those
deciding whether to jump on. "This is one more thing against it,"
Averitt says. "We don't know if this syndrome is a result of
toxicities, and we don't know if it's a danger to our health, and
there's nobody right now who can tell us. Like everything else with
HIV, it's a crapshoot."
The bigger unknown -- the elephant in the Elephant Man's room --
is whether this "cosmetically sensitive" syndrome is the tip of a
health-disaster iceberg. Says Giordano: "We are telling people they
have decades of life expectancy. If we're seeing this amount of
endocrine dysfunction in only two years, are we going to see
diabetes and heart disease or even osteoporosis down the line?"
For the moment, Ann Birmingham has chosen not to gamble on
long-term protease-inhibitor use. Though she is acutely aware that
this decision is not widely respected by medical professionals or,
for that matter, by her friends and family -- going on and off and
back on therapy can cause resistance -- she hasn't started taking
the meds again. Birmingham says, "I need my body to find its way to
being normal." As long as she was on the drugs, she says, others
felt better that she felt better and was doing "everything" she
could to help herself. Stopping treatment threatens this
complacency, and might strike some as willfully perverse, a twisted
sense of priorities (fluff over health). But Birmingham points out
that in the end, it's a treatment option -- not a cure -- she's
refusing. Whether she'll go back on a protease combo is hard to
answer. "I don't want to," she says. "But the reality is, if my
viral load shoots up and I get sick, I'll have to. I'm feeling
pretty good about being in my skin. I can now look in the mirror and
recognize the person looking back at me."