Issue
Number 332
August 21, 2002
UNPROTECTED PEOPLE: Stories of
people who have suffered or died from vaccine-preventable diseases
Story #49:
YOUNG DOCTOR LEARNS HE HAS LIVER CANCER TOO LATE
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The Immunization Action Coalition (IAC)
publishes stories of people who have suffered or died from
vaccine-preventable diseases and occasionally devotes an IAC EXPRESS issue
to such a story. This is the 49th story in our series.
Recounting a young doctor's death from hepatitis B-related liver cancer, the
story is a tragic example of the consequence of inadequate medical attention
to people with chronic hepatitis B. A lack of information about how to
appropriately screen patients with chronic hepatitis B for liver cancer puts
many lives in jeopardy. For information about the management of patients
with hepatitis B, consult a liver specialist experienced in the treatment of
viral hepatitis.
This article was written by Joel P. Engardio. It originally appeared in the
May 1, 2002, issue of SF Weekly, a San Francisco newspaper, under the
headline "Dying to Know." It was reprinted in the Summer 2002 issue of
NEEDLE TIPS, an IAC publication, by permission of the author.
*******************************
From our table at a sidewalk cafe in August 2000, my partner Mark and I took
turns pointing out things that made us smile: a young couple pushing a baby
stroller, a rambunctious puppy tugging at his leash, an elderly couple
holding hands. Our mood was sublime, like the day, as we headed to an
open-air jazz festival near San Francisco with a blanket for napping on a
grassy slope.
Until a sharp stomach pain made Mark wince and double over. Was it the ulcer
he feared? At 30, Mark was a young doctor saddled with debt and the
challenge of building a career after eight sleepless years of medical school
and training. A life with dogs and kids was only a wistful thought. He
crawled into the back seat of the car, cursing and writhing, as I sped him
to the emergency room where he worked.
Mark didn't have an ulcer. An ultrasound of his abdomen showed an ominously
patchy liver. A biopsy confirmed the worst: cancer. His liver was riddled
with so many out-of-control cancerous lesions that neither surgery nor
transplant was possible. Chemotherapy would only slow his inevitable,
insufferable demise 14 months later. But the question remained, how did such
an otherwise perfectly healthy young man, who had a gym-toned body and never
drank, end up with the organ of a hard-living alcoholic twice his age? The
answer was chronic hepatitis B, a virus that can silently harbor in a
healthy liver for decades before unleashing its destructive power.
Mark knew about his hepatitis. He discovered it from blood tests required by
his medical internship. But experts at the prestigious Midwestern hospital
where Mark did his residency told the 26-year-old not to worry. He was
a "healthy" carrier, they said. His symptom-free, nonactive kind of
hepatitis wouldn't have to be monitored for liver cancer until he was in his
50s or 60s. Good advice, if Mark were not an Asian man. (Editor's note: No
hepatitis B carrier, regardless of ethnicity, should wait until age 50 or 60
for liver cancer screening. Screening people with chronic hepatitis B
infection for liver cancer should generally be done every 6-12 months and
should start at the time of hepatitis B diagnosis. Consult a liver
specialist experienced in the treatment of viral hepatitis for appropriate
monitoring guidelines.) Had he or his doctors been trained to know that
Asians are at accelerated risk because they are typically infected as
children, he would have immediately gotten regular ultrasounds and blood
tests to catch the cancer that killed him at 31.
Soon after his diagnosis, Mark was shocked to see a sign on a city bus
advertising Stanford University's "Jade Ribbon Campaign," a program to raise
awareness of his disease. Was there really a chronic hepatitis B-fueled
epidemic of liver cancer among young Asian-Americans? Are Asians really 10
times more likely to die from liver cancer than a white person? How come he
hadn't heard this before? He was, after all, an Asian doctor practicing in a
region with a population that is nearly one-third Asian. But as a victim
among healers, what happened to Mark precisely illustrates the problem, says
Dr. Samuel So, director of Stanford's Asian Liver Center. "Only in a medical
world that relies almost entirely on a Caucasian model for diagnosis and
treatment could such a great health disparity exist," says So, who lectures
on ethnicity and medicine at Stanford in addition to his surgical and
research duties.
Liver cancer is rampant in Asia. The main culprit is chronic hepatitis B, a
virus transmitted by blood or semen. Exposure to it at childbirth is
the real problem, because that's when the risk of chronic or lifelong
infection is greatest.
Unsanitary living and medical conditions throughout Asia have fueled
hepatitis B infection rates there, as large percentages of mothers
unknowingly pass the virus to their kids. Since it can take 30 years to
manifest, all adult children of Asian immigrants--even those born in the
United States--are at risk. Especially sons. The virus may infect the sexes
equally, but it triggers deadly cancer more often in men.
Mark was born and raised in suburban Chicago by Chinese parents who had
lived in the Philippines. While many newborns are vaccinated for viruses
such as hepatitis in the U.S. today, an entire generation now entering
adulthood was not. Stanford's Dr. So estimates that up to 10 percent of
adult Asian-Americans have chronic hepatitis B and do not know it. Of those,
a quarter will die from liver cancer or failure. That is an alarming number,
since the Asian-American population is one of the country's fastest-growing
minority groups. In California, 30 percent of San Francisco and 12 percent
of Los Angeles is Asian. How many unaware young Asian men will double over
in pain one day like Mark did?
Before Mark died last October, he became a spokesperson for the Jade Ribbon
Campaign (http://liver.stanford.edu),
urging all Asians to check their hepatitis status. Confronting his own
mortality wasn't easy for him. "It's scary to think of your life in months,
instead of years," he told me as his death approached, our dreams of that
day at the sidewalk cafe shattered. I am still feeling the anger and despair
that can engulf you when the person you love is taken away. It hurts most
because Mark Steven Lim was such a vibrant and vital force to his family,
friends, and patients. As a talented doctor and consummate human being, he
had so much potential to do good. Yet his life was so short, and his death
so horrible. In the end, the most he could do was hope his words might
inspire his medical colleagues to offer--and his Asian peers to seek--the
information that can save thousands like him from his fate. If only they
listen.
*******************************
For a camera-ready copy (PDF format) of this story, go to:
http://www.immunize.org/nslt.d/n26/story26.pdf
To read other IAC Unprotected People stories, go to:
http://www.immunize.org/stories
DISCLAIMER: The Immunization Action Coalition (IAC) publishes Unprotected
People stories for the purpose of making them available for our readers'
review. We have not verified this story's content, for which the authors are
solely responsible.
DO YOU KNOW OF STORIES OF UNPROTECTED PEOPLE? Please let us know if you have
personal stories of people who have suffered or died from
vaccine-preventable diseases or if you know of stories that have appeared in
the media describing suffering that occurred because someone was not
immunized. Send your stories or case reports to IAC Express by email to
admin@immunize.org or by fax to
(651) 647-9131.
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