Jay Stinson has lived with AIDS since before
it had a name. Diagnosed in 1975 with Pneumocystis carinii
pneumonia (PCP), he stitched together a patchwork of health
practices to survive a succession of serious infections in the years
that followed. In 1986, after a lover died, he lost his will to
live. "I became obsessed with disease and dying," he says. Within
weeks, rapid-fire, he was attacked by a case of shingles, a second
bout of PCP and the brain lesions of toxoplasmosis. But after
starting a then-experimental drug, which his doctor said might give
him two years to live, Stinson remembered Oscar Wilde's lament: "My
only regrets in life were the things I didn't do."
"I had seen too many friends die bitter and angry deaths because
of the things they put off, the dreams they would never realize,"
Stinson says. He made a few decisions: To become a master mariner
and sail the world, write an autobiography and heal his
relationships. He sold his possessions, bought a sailboat, and spent
almost six years on the ocean. Now, after logging 40,000 nautical
miles, 1,100 written pages and a dozen improved friendships, Stinson
is, at 53, alive, well and land-based again.
While sailing, he learned to use a kedge, an anchor one throws
off the stern when the boat has run aground. "Goals -- heartfelt,
passionate goals -- are like anchors in deep water," Stinson muses.
"When I get into I-don't-want-to-live thinking, I remind myself I
have an anchor out there. And I use it to pull me through."
His words resonate. Ringed by a group of others not quite so far
along in their self-made peace, Stinson shared this story recently
in San Diego at a session of a unique psychological training program
for people with HIV. Designed to boost immune competence, it is
aptly called L.I.F.E., for Learning Immune Function Enhancement.
Stinson is staff assistant, international liaison and inspirational
role model for the L.I.F.E. Program.
L.I.F.E. is one in a growing array of programs nationwide that
offer HIV positive people survival strategies ranging from
overcoming denial and expressing grief to managing stress and
learning basic workaday health maintenance practices. Studies are
pending, but earlier research suggests that programs such as
L.I.F.E. may help people gain improved quality of living and
slower -- perhaps even no -- AIDS progression.
The 12-month L.I.F.E. Program was launched in 1992 by
psychologist Jeffrey Leiphart, Ph.D., clinical director of the San
Diego Lesbian and Gay Men's Community Center. L.I.F.E. is based on
both Leiphart's 13 years of therapy experience with 500 HIV positive
gay men and his exhaustive study of an exciting, up-and-coming
field: Psychoneuroimmunology (PNI).
More than just a five-dollar word, psychoneuroimmunology is the
science of how the mind, nervous system and immune system interact.
For 30 years, PNI researchers have been uncovering the elaborate
hormone and endocrine network by which psychology, emotions and
stress influence health and disease. According to Leiphart, "PNI is
a well-established branch of medical science, with both developed
theoretical models and published experimental research studies that
number in the thousands."
A growing body of PNI research on various diseases, including
AIDS, shows that such factors as stress, depression, unresolved
grief, social isolation and stigma have tremendous impact on immune
function -- and thus on survival.
There have been numerous small but promising university-based PNI
studies of people with HIV. All attempt to control for other factors
(such as low original CD4 levels, substance use or lack of HIV
treatments) that could explain the results. Among the findings:
Men with AIDS who had negative expectations about their future
health survived a significantly shorter period of time compared to
their more optimistic counterparts.
Newly diagnosed symptom-free HIV positive gay men who initially
used denial to cope with the news of an HIV diagnosis had lower CD4
cell levels one year later (controlling for original CD4 levels) and
greater likelihood of developing symptoms and AIDS two years later.
Among a sample of HIV positive gay men, AIDS progressed more
rapidly to the degree participants remained closeted about their
homosexuality. This included shorter times to low CD4 cell levels,
AIDS and death.
Secrecy about one's HIV positive status predicted faster
progression of disease.
For HIV positive people repeatedly losing lovers and friends,
grief that was contained and unresolved predicted faster AIDS
progression, while expressed and resolved grief coincided with
enhanced immune functioning.
But PNI findings remain controversial. Some scientists claim that
controls are often inadequate. San Francisco AIDS epidemiologist
George Lemp said in a 1990 interview: "Studies have shown that
attitudes can affect things somewhat, but I think it's a minor part
of the picture. People who live longer may have a good attitude, but
that may be a false association."
Margaret Kemeny, assistant professor of psychiatry at UCLA and a
leading PNI/AIDS researcher, counters that opinion. "[PNI] flies in
the face of a lot of medical dogma, which does not put much credence
in the psychological condition of the patient." Kemeny, a L.I.F.E.
consultant, criticizes "dogmatic" researchers and "clinicians who
will not consider the findings of even the most solid research in
this area because it does not fit with what they 'know'."
Until recent years, most biologists "knew" that the central
nervous system functioned autonomously from the immune system. But
in 1964, psychiatrist George Solomon, then at Stanford University
Medical School, become convinced, after research on rheumatoid
arthritis (an autoimmune disease), that these systems were closely
linked. His later experiments with rats, performed with immunologist
Alfred Amkraut, demonstrated that stress can be immunosuppressive
and confirmed Russian research showing that particular brain regions
This groundbreaking work opened up the field of
psychoneuroimmunology that today includes psychologists,
immunologists, neurobiologists, endocrinologists and molecular
biologists. These diverse researchers have established that the
brain/immune system pathway involves the cortex, hypothalamus and
pituitary and adrenal glands. "Sustained activation and arousal of
this axis is intimately tied with depressed immune system
functioning, especially T-cells," Leiphart says. "Adrenaline,
produced by the body during intense emotional states such as fear,
panic and rage, is known to suppress T-cell functioning."
Kemeny adds, "Research in this area has exploded in the last 10
years, showing, for example, that hormones and neurotransmitters
produced under stressful conditions can alter the functioning of
PNI is also shedding new light on the role of natural killer (NK)
cells, an often-neglected immune-system arm that can identify and
destroy HIV in the blood and inside other cells. NK cells are
stimulated by physical exercise, and high NK levels -- a consistent
trait of many long-term survivors -- are strongly correlated with
self-assertiveness [see below].
In the 1980s, PNI research on people with several illnesses
(breast cancer, malignant melanoma, herpes and the common cold) as
well as on healthy people showed clearly that stressful life events
led to decreased immune function and that those who coped better
with stress recovered more fully. An especially strong study at
Stanford University Medical School found that women with metastatic
breast cancer who completed an intensive group therapy program
survived significantly longer than untreated women.
When the AIDS epidemic took hold, researchers were eager to test
the ways PNI might apply to this disease. Long-term survivors
provided key leads. The 1987 PNI study of 18 gay long-term
survivors, designed with the help of 5 survivor consultants,
established the field's relevance to AIDS. That study, by Solomon,
Lydia Temoshok (a widely published psychologist at the University of
California in San Francisco) and others, found a number of attitudes
and behaviors that distinguished long-term survivors and offered
hope to PWAs. In 1994, a similar UCLA study by Solomon and others,
examining nine HIV positive, symptom-free people with under 50 CD4
cells, confirmed many findings of the earlier study.
The growing body of PNI research set the stage for clinical
programs like the L.I.F.E. program. The core of L.I.F.E.'s
approach is "co-factor counseling" -- assessment and remedial
treatment of the 19 life issues shown to speed AIDS progression. In
refining the program, Leiphart has valued the input of PWAs such as
L.I.F.E.'s three-month group education program, during which
participants learn about and measure their own co-factors, precedes
another three months of individual and group counseling, where
counselors and clients jointly develop strategies to reverse
negative practices and maintain health-enhancing ones. The program
is rounded out by six months of weekly support group sessions to
help apply the new behaviors.
Stinson's spokesmodel role is a deeply personal statement of his
support for the program. "Many aspects of pro-immune or
immune-enhancing therapy are common sense, such as nutrition, water,
sleep, exercise. However, when fear, panic, grief, depression,
stress and anxiety are present, the first practices to be abandoned
or forgotten are those which are common sense. The L.I.F.E. Program
reminds me of my common sense. It's as simple as 'getting back on
the wagon' when I fall off. Unfortunately, most people don't have a
'wagon' to begin with."
PNI-based programs elsewhere use some of the same elements. At
Deaconess Hospital in Boston, for example, the HIV Behavioral
Medicine Program has for eight years run a 10-week group counseling
and education program that offers training in relaxation, stress
management, cognitive therapy (dealing with negative thoughts),
yoga, nutrition, journaling, goal-setting, communication techniques
Research into the therapeutic effectiveness of PNI intervention
programs, often self-administered, is now underway. Psychiatrist
Kemeny runs a clinical trial at UCLA Medical School, where an
intensive 12-week therapy group for HIV positive people focuses on
maximizing quality of life and learning stress management and
relaxation techniques. Half the participants are counseled and the
other half, those on the waiting list, are merely observed, with the
results -- bloodwork, symptoms, quality-of-life measures -- to be
L.I.F.E. has several carefully designed studies underway. As in
other areas of AIDS research, all previous PNI studies looked
primarily at gay white men. So L.I.F.E. is taking pains to include
often-excluded populations. Besides the original group for gay men,
L.I.F.E. is working with other San Diego organizations to offer
specialized groups for women, African-Americans, Latinos and people
Leiphart notes that each group has unique traumas. "Any sustained
stress from discrimination or negative social conditions can lead to
immunosuppression. Good examples are African-American men who avoid
HIV services because of the AIDS stigma in their community and
heterosexual women isolated from their HIV positive peers."
L.I.F.E.'s research may shed light on why so few women are long-term
survivors and on the role of social stresses like poverty, family
caretaking and witnessing a child's death, and biological factors
such as women's hormone systems.
The few completed PNI clinical investigations offer mixed
results. One early study of relaxation counseling showed no changes
in immune markers, whereas three later studies of stress management
group therapy showed, respectively, increased CD4 cells and NK
cells; decreased antibody to two viruses which can activate HIV; and
reduced distress levels predictive of rate of CD4 decline over the
next two years.
A two-year study at the University of Miami Medical School found
that among 21 HIV positive gay men trained in stress management --
including moderate exercise, guided relaxation and positive thinking
-- those who maintained the practices most, and those least in
denial about their condition, had the lowest rates of disease and
But the research team was denied federal money for follow-up
Of course, from Galileo to Gallo, the history of science has been
cluttered with stories of clashing egos, monumental hubris,
strong-arming, railroading and once-mocked theories avenged decades
or even centuries later. Surely with this in mind, PNI researchers
have -- with increasing success -- faced an uphill struggle to
transform many tantalizing leads from small studies into the major
funding needed for more definitive PNI investigations.
During their lives, activists Michael Callen, a founder of
numerous PWA self-empowerment groups who survived AIDS 12 years
until his 1993 death, and Aldyn McKean, an ACT UP/New York leader
who lived with HIV-related symptoms for 14 years until his 1994
death, played key roles. They publicized early findings and
generated support for modestly increased research. Callen's 1990
book, Surviving AIDS (HarperCollins), included a popularly written
description of PNI theories and research. McKean made eloquent
pleas, in both television interviews and speeches at international
AIDS conferences, for more long-term survivor studies of diverse
Unfortunately, the well-known views of some "think your way to
health" advocates have fed some PWAs' skepticism about even the
rigorous PNI approaches. Most PNI supporters hasten to dissociate
themselves from that school of thought. After commenting that "it
simply makes sense to try to mobilize whatever immune-enhancing
effects might flow from marshaling the mind," Callen's book
cautions: "On the other hand, I'm troubled by those who believe that
attitude is all -- that the search for drugs isn't really necessary
because if only you love yourself enough, you can will AIDS away.
This seems to me to be a dangerous oversimplification of available
evidence." Adds UCLA's Kemeny, "It is very upsetting to me when I
see HIV positive people trying to have a positive attitude for fear
that if they don't they will develop a worse illness course. I would
not recommend to people that they try to force optimism. But I would
suggest that people examine their perspectives on the future."
All signs suggest that PNI is on the brink of a major leap
forward, in both clarifying the mind-body connection and designing
effective therapies. But conservative doctors and scientists,
particularly virologists focused on viral studies, control key
committees at the National Institutes of Health (NIH) which review
grant proposals. Their attitude is exemplified by a 1994 report of
the federal Institute of Medicine, which labeled the role of brain
influences on immune defenses in AIDS progression "relatively minor
in relation to the overwhelming influence of the virus and other
determinants" and discouraged prioritizing such research.
While the National Institute of Mental Health (NIMH), an NIH
subunit, has financed limited PNI research, the field received a
setback last year. Immunologist William Paul, director of the Office
of AIDS Research (OAR), which controls all HIV-related funding at
NIH, halted future grants for any PNI research "not directly
AIDS-related." The decision incensed PNI scientists; a delegation
failed to dissuade him in a face-to-face meeting. Leiphart argues
that, given the interrelated nature of PNI basic science and
disease-specific research, "it makes absolutely no sense. To ignore
the published scientific findings is negligent." Paul did not
respond to a POZ request for comment. An informed source told POZ
that this September, NIMH's director of AIDS research, Ellen Stover,
stopped funding even AIDS-specific PNI research. Stover denies this,
saying she has merely conformed to Paul's requirement "that all work
supported with AIDS dollars is AIDS-relevant." She concedes,
however, that PNI is "not among our top priorities."
Another sign of NIH's position came this past February when Paul
appointed blue-ribbon panels comprising more than 100 scientists
plus a few community representatives to evaluate the $1.4 billion
NIH AIDS research program. (The panels will recommend a revised AIDS
budget by January 1996.) No PNI expert was included among the
Citing this and other omissions, ACT UP chapters in New York and
Philadelphia began a pressure campaign seeking broader scientific
and community representation. One of several concessions OAR granted
was the appointment of ACT UP's nominee, Dr. Bruce Rabin, director
of the Brain, Behavior and Immunity Center at the University of
Pittsburgh Medical School and president of the PNI Research Society.
Rabin, the author of more than 300 scientific papers, now sits on a
review panel on HIV pathogenesis (disease progression). He observes,
"PNI is not considered an area of priority for OAR. The NIH and OAR
have to consider where we can make the most advances in how to treat
PWAs. The question is viral replication versus PNI. This is simply
the politics of priorities." But his own position is clear: "PNI is
very important for AIDS, and AIDS money should be used."
In September, at an NIH hearing held at ACT UP's insistence,
several statements called for increased PNI research. One came from
Eric Sawyer, HIV positive for 10 years and living with AIDS for
four. Sawyer cofounded the Michael Callen/Aldyn McKean Fund for
Long-Term AIDS Survival Research, based in New York City. "We had to
establish this fund because of this same attitude of resistance to
financing this type of essential research," he says. "Many PWAs feel
that research into PNI probably holds more potential to identify why
long-term survivors live so long than endless studies of the virus.
For Dr. Paul to limit NIH research to orthodox approaches shows both
a lack of understanding of AIDS and an unwillingness to investigate
things that might benefit people with HIV rather than drug
companies. Until extensive scientific studies in PNI are done, we
won't know whether psychological factors or conventional or
alternative treatments are the key to long-term survival."
Indeed, long-term survivors themselves may have the most to teach
clinicians about PNI. Michael Callen wrote in 1990, "The human mind
is a great, largely untapped pharmacy, and it behooves anyone facing
a life-threatening illness to investigate ways to harness this
tremendous resource." Jay Stinson feels the same: "Being a long-term
survivor means trying to find what works. Friends of mine who have
survived are those able to commit themselves to recovery, to
Stinson now devotes himself to helping form a foundation to
export the L.I.F.E. Program nationally and worldwide. "What has kept
me alive and gotten me through things others have died of is having
a sense of purpose in life." He recently told members of a L.I.F.E.
support group, "You are my purpose. Doing whatever I can to
contribute to the quality of your lives is my purpose! I know that
because I feel passionately about it. That passion is my hook -- my
kedge -- which pulls me through today into tomorrow."