Press releases - AUGUST 1998 - 7 articles
24, 1998 Author: Ellyn Spragins
It in Writing: Your medical record is like a credit
rating.Don’t neglect it.
were nothing new to Melody Johnson, a 15-year-old California
girl who’d suffered from cystic fibrosis since early
childhood. And when her condition took a turn for the worse in
1994, her parents, Terry and Jay, reacted promptly. They
detailed Melody’s deterioration to her doctor at the Chino
Medical Group and begged the physician to consult with a
specialist at the Children’s Hospital of Los Angeles County.
They went home anticipating action. It wasn’t until much
later, after Melody’s health continued to deteriorate, that
Terry and Jay learned their fears had hardly registered with
the doctor. In fact, the clinic notes read, "CF. Doing
well." If she had seen those notes, Terry says now, she
would have known she needed to turn elsewhere for help. (Chino
Medical Group didn’t respond to phone calls requesting
Few of us keep a
close eye on our medical records. We assume we’re not
entitled, since the documents technically belong to doctors,
hospitals or health plans. But that attitude is left over from
the old, paternalistic health-care system. In the new order,
keeping a current medical record is a key tool for monitoring
the care you receive. And making sure your past records are
pristine is the best antidote for two other health-care
headaches: claims disputes and securing new insurance. If
you’ve ever discovered an error in your credit history too
late, you know what misery it can cause. Here’s how to keep
that from happening with your medical records:
First, get the
goods. Health providers can be prickly about sharing records,
particularly when they sense trouble. "If there’s a
whiff of a lawsuit or dispute, then the hackles get
raised," says Dr. Vincent Riccardi, whose La Crescenta,
Calif., company, American Medical Consumers, counsels patients
about navigating the healthcare system. That’s why it’s
best to co llect your records before you really need them.
Under ordinary circumstances, most doctors’ offices will
provide copies for a small charge. Health plans and hospitals
are more likely to tell you when you can come in to inspect or
copy them yourself. California grants consumers the right to
inspect records within five working days of a written request,
after paying clerical costs. Many states have adopted similar
rules. Call your state’s department of insurance for
guidance if your request is denied.
Once records are
in your hands, check them for omissions. Notes from an initial
complete physical exam should cover your family history,
lifestyle, past health, current health complaints, a review of
body systems and a list of drug and allergy sensitivities. If
you visit a doctor for a specific problem, the record should
reflect your chief complaint, a sentence or two of history and
a short physical exam. You may need help decoding all the
Now, ask key
questions. Do the records reflect what happened, as you
recall? Is there a description of a temporary affliction that
could be tagged later as a pre-existing condition? "A
talk about stress on the job could be characterized as a
mental-health condition," says Chuck Milligan, director
of Medicaid for New Mexico. Also, watch for a red-flag term:
noncompliant. It means you don’t follow medical advice. But
it can also be an excuse for the doctor to give up on your
Jump on mistakes
you find right away. Call the doctor, explain that the record
doesn’t jibe with your experience and ask why. More than
likely, he didn’t have time to write everything down.
Describe what you think should be inserted, or changed, and
follow up with a brief letter. Be sure to include this
sentence—"I expect this letter to become a part of my
medical record"—and send a copy to the records
department of the insurer or hospital involved.
even more from taking ownership of your medical record if you
stay on top of it. Ask for a copy of the doctor’s notes on
your way out of an appointment—and read them. It’s also
smart to keep a diary of every interaction with a health-care
provider, whether it’s in person or over the phone. You
wouldn’t think twice about auditing your credit history to
defend your good name or tracking investments to understand
your retirement prospects. Now it’s time to start giving
your medical profile the attention it deserves.
medical workers become infected with the AIDS or hepatitis
viruses from accidental punctures each year.
By Kathleen F.
Phalen - The Washington Post Company
Tuesday, August 11, 1998; Page Z10
Sept. 9, 1992.
Lynda Arnold was working the evening shift at a hospital in
Lancaster, Pa. Just a few months out of nursing school, Arnold
was living her dream of being a critical care nurse.
care unit was lightly staffed that night. And the evening
shift supervisor got called to another floor. Arnold was left
behind to handle the unexpected.
"We got a
critically ill patient who came directly from the outpatient
clinic," she recalls. "There were no doctor’s
orders, and we weren’t sure what was wrong with the patient.
But I knew I had to start an IV catheter. It was standard ICU
She gathered her
supplies, found a good vein in his left arm, near his wrist,
and inserted the catheter. "The patient suddenly moved. .
. . It was violent and he hit my hand, the one that held the
needle," she says, recounting the details that never seem
to fade. "It punctured my latex glove and was thrust into
my left palm."
She walked to
the sink and took off her glove. There was a jagged tear in
her palm and she was bleeding. "I was 23 years old, four
months out of nursing school, working in a 206-bed hospital in
the middle of Amish land," Arnold says, recounting her
early thoughts. "I decided nothing would happen to
discovered that the patient had AIDS. He died two weeks after
the injury. Six months later, she tested positive for the
human immunodeficiency virus (HIV) that causes AIDS.
"As soon as
I walked in the door of the employee health office, I
knew," she says. "I looked at the nurse and she had
tears in her eyes, and I started crying. It was all
injuries are not uncommon. Thousands of health care workers
each year are injected with patients’ blood when needles
that have been used to perform often life-saving procedures
suddenly become virulent projectiles penetrating a palm, a
wrist, a finger, a thigh. Approximately 800,000 U.S. health
care workers will be injured by patient needles this year,
according to estimates used by the federal Centers for Disease
Control and Prevention (CDC).
estimates from the CDC and EPINet—a computer-based
standardized injury tracking system used by about 1,500 U.S.
hospitals—suggest that more than 2,000 of those workers will
test positive for new infections of hepatitis C, another 400
will get hepatitis B and 35 will contract the AIDS virus.
While AIDS is
the most feared infection, hepatitis B and C are also serious
and life-threatening. Both diseases can lead to liver damage,
cirrhosis and cancer. A vaccine is available for hepatitis B,
which has helped reduce the number of health care workers
infected each year from a high of 17,000 in 1983.
But there is no
vaccine for the C virus, which public health officials believe
has infected more than 4 million Americans. "The risk [of
getting hepatitis C from a needle stick] is ten times greater
than HIV," says Robert Ball, an infectious disease/HIV
consultant and epidemiologist for the South Carolina
Department of Health.
workers, the hazard of contracting a potentially fatal disease
is a constant worry. "It’s not going to go away, needle
sticks happen. This is a huge public health threat," says
Arnold, now 29.
With a swipe of
a hand, a careless act or an unexpected bodily jerk, a medical
worker’s life can be forever altered. Considered an
occupational hazard that’s long been worn like a red badge
of courage, this injury remains under-reported and
under-protected, according to public health officials.
up to a million health-care workers receive a needle stick,
and for many it is a death sentence," says Andrew Stern,
international president of Service Employees International
Union, the largest health care workers’ union in the
country, which is campaigning to have all workers use
specially designed safety needles. "It’s an outrage.
This is a preventable crisis. More die of needle sticks than
died in the ValuJet crash, but ValuJet sparked all kinds of
As the crisis
mounts, public health officials are meeting here yesterday and
today at the Frontline Healthcare Workers Conference to
discuss the issue. Charles E. Jeffress, assistant secretary of
labor for OSHA, acknowledged that more research needs to be
done, but said the first step in the process is gathering
information. In the administration’s first public remarks on
the matter, Jeffress said, "OSHA will be issuing a formal
request for information, calling for public comment and
research results. . . . We believe a comprehensive strategy
represents the best approach to preventing needle sticks. But
we’d like to hear from you on the front lines."
No Turning Back
The stories are
hauntingly familiar. They are doctors, nurses, technicians,
phlebotomists, dentists, aides and laundry workers, to name a
few. And when it happens, there’s no turning back.
"I felt my
heart lurch into my throat, I was so frightened at that moment
that I had irrational thoughts," says Patti Wetzel, a
Texas physician infected with HIV in 1991 after making a house
call to draw blood from one of her dying AIDS patients. She
wanted to save him the ambulance ride to the hospital.
"The needle was dangling from my finger and I could see
small drops of patient blood coating the needle, I thought
about chopping off my finger to protect myself."
And now, like the others, Wetzel is hoping for the best. She
has not developed AIDS, but about four years ago Wetzel
stopped practicing medicine, afraid of exposure to
tuberculosis. She spends about half of her time on the lecture
circuit, educating people about needle stick hazards. The rest
is saved for things like visiting with friends and family.
"I live in
the moment. I learned that my career is not the be-all and
end-all. My needs are more simple now," she says.
"If I were cured tomorrow, I hope I wouldn’t change a
Beth Anne Algie
was 22 and six months out of nursing school when she was
injured some 20 years ago. "I was injecting a sweet
little old lady, she was 93 and we considered her a low risk.
All of a sudden she swatted her hip and sent the syringe into
my other hand," says Algie about the needle stick injury.
"Right away I thought I’d be okay, she was considered
The patient had received a blood transfusion and was carrying
the hepatitis B virus, which infected Algie.
enzymes shot up and I was [critically sick] for months and
months," says Algie. "Initially I was out of work
for a very long time."
When she started
feeling better, Algie says, she took risks because she knew
she was dying. She became a flight nurse. "I was flying
on missions in Central America . . . I figured who better to
go than an ICU nurse who was going to die anyway," she
recalls. "But as I got sicker and more afraid, I knew I
had to remove myself from the clinical setting." More
recently, she has been working in public education campaigns
on the risks of needle sticks. "I live for today.
There’s no way I’m going to see retirement, so for now I
am doing what I can do to save the lives of my colleagues. . .
. They are dying and that’s intolerable."
A Lack of Concern
injury for some workers is a lack of concern by their
employers. Arnold’s hospital has been very supportive. And
officials there continue to help with her needs. Other
hospitals do not, health workers say. One of the most
celebrated cases occurred in Montana, where a respiratory
therapist became infected with HIV after using a defective
needle in an arterial blood gas kit that the hospital
knowingly received at no charge from a manufacturer. The
hospital refused to pay any damages. When the therapist sued,
the court ruled that the therapist could not recover damages
from the hospital because the injury was covered under
workers’ compensation. Other states have also adopted that
facilities who deny workers’ compensation," Arnold
says. "And many employees are forced to pay their own
expenses. People call me all the time because they aren’t
getting the help and support they need. They don’t know
where to turn, and they are often in dire straits."
discover only after an injury that they may not be reimbursed
for wages or medical costs. That’s what happened to Wetzel.
have workers’ compensation," she says. "In Texas,
an employer is not required to provide it."
In some cases,
injured workers have also had their personal lives come under
intense scrutiny as employers seek to determine if the
infection could have been caused by sexual relations or drug
of proof should not be on the worker," says Andi Thomas,
the executive director and co-founder of Hep-C ALERT!, a
national advocacy organization based in Florida.
employers who don’t deny claims, the costs are staggering.
"I have a
case right now where the worker has hepatitis C that she
contracted in 1996," says Colleen Holland, a senior
claims adjuster for South Carolina-based Palmetto Hospital
Trust. "The medical and indemnity costs so far are about
$165,000, and it is projected that the medical costs may
exceed $300,000 and the indemnity will cap out at
explains, every state is different, but in South Carolina,
workers’ wage compensation, which falls under indemnity, is
capped at two-thirds of the worker’s individual weekly wage
or $436 (whichever is less) for a maximum of 500 weeks. That
means that if a 23-year-old worker was totally disabled as a
result of a needle stick injury, that worker would receive
benefits for just under 10 years, or until he or she was
no cap on medical expenses if [patients] are permanently and
totally disabled," Holland says.
But the costs
can also be psychological. Donna Cieniawa, a registered nurse
in Massachusetts, was injured with a needle while working in
an emergency room in 1996. "I can’t put it into words,
it’s a daily terror you live with, and my hospital did
nothing to help," Cieniawa says.
Although the CDC
had published recommendations for treatment to help prevent
HIV infection after a health care worker is stuck by a needle
or other sharp object, the doctor who initially examined her
was reluctant to prescribe the drug combination of ZDV (zidovudine)
and 3-TC (lamivudine). After some persuasion and pressure from
a doctor at another hospital, Cieniawa was placed on the
drugs. The patient who had been treated with the needle that
stuck her had not been tested by the hospital for HIV because
of a state law requiring the patient’s consent. That law has
Wetzel and Algie, Cieniawa did not become infected with HIV or
hepatitis, but the emotional scars remain. "Their
attitude was, ‘We filled out the paperwork, we drew your
blood, you’re done,’ " she says. "When I look
back, I realize I was absolutely dysfunctional."
Mapping Strategies for Prevention
there is no one easy technique for prevention because these
injuries result from a multitude of causes and occur in a
variety of situations. Among the causes are worker inattention
and a lack of safety needles in health care settings.
"This is a
multifaceted issue," says Wetzel. "It’s not just
the workers. It’s not just the administrators or the needle
manufacturers. It’s not just the regulators. Health care
workers need to wake up and pull their heads out of the sand,
then maybe we will have the leverage to make changes."
In 1991, the
Occupational Safety and Health Administration required
hospitals to regularly educate employees about handling blood
and blood products. Most agree that hospitals comply with
these educational guidelines for all employees, and some
employees follow safety protocols to the letter. But others
safety protocols isn’t foolproof. Lynda Arnold did. Patti
Wetzel did. Beth Ann Algie did. Donna Cieniawa did. They all
got stuck. "The people I worked with made fun of me
because I always got my goggles, wore my gloves. That’s the
irony of it," says Arnold, who spends a great deal of her
time trying to educate workers about the hazards.
A variety of
safety needles are available today and they include products
that blunt during use, have protective sheaths or retract.
According to a report from the CDC, these instruments, if used
more regularly, could prevent injuries up to 76 percent of the
officials have complained that the safety products cost about
twice as much as the conventional hollow bore needles and that
manufacturers need to produce the safer devices more cheaply.
But manufacturing leaders say that it’s a matter of supply
and demand. As more are manufactured, the processes are
streamlined and costs will drop, they say.
becoming more efficient in manufacturing these devices and we
are improving our procedures. We have been reducing costs by
five to seven percent per year," says Clateo Castellini,
chief executive officer of Becton Dickinson, an international
medical technology company that focuses on disposable medical
devices and diagnostic systems. "We’ve learned that
this is a complex area and we have to work with others. . . .
We think eliminating the transmission of infectious disease by
sharps [needles and other devices that can cut or puncture the
skin] is a role we have to play. We believe it is an ethical
issue to protect users."
manufacturers, such as Bio-Plexus, manufacture only safety
needles. "Every needle we make will be a safety
device," says Tom Sutton, executive vice president of
marketing and administration. "But there is a tremendous
resistance to using safety devices. It’s just like seat
belts, you know you have to use them, but it took a long time
for people to comply."
care pressures squeezing the bottom line at most health care
facilities, executives say they can’t switch to the safety
needles until the costs are lower. But advocates such as the
Service Employees International Union, Arnold and Wetzel are
campaigning nationally for safer devices in all hospitals. And
Rep. Fortney "Pete" Stark (D-Calif.) has introduced
anti-needle stick legislation.
ought to be thinking about the cost of supporting one HIV
patient for the rest of their life," says Dana Trom,
director of materiels management for Martha Jefferson Health
Services in Charlottesville. "Just bite the bullet. You
have to look at the whole picture and you need to support your
One of the
obstacles to a stronger prevention effort is that injuries
happen in such a wide variety of ways. Arnold and Algie’s
injuries occurred while the needle was in the patient’s arm.
Wetzel’s was after the procedure. Forced to cap the needle
because there was no sharps disposal container at the
patient’s home, she was injured when the cap dislodged from
the infected needle and punctured her finger. Cieniawa’s was
with a needle she had not even used, but one that someone left
needle stick injury has a sequence of events, and you have to
break these down categorically," says Murray Cohen,
former CDC chief of medical device evaluations who heads the
Frontline Healthcare Workers Safety Foundation. "That’s
why you can’t get all excited about a product and think that
it will solve it. If it was so simple, we would have already
figured it out."
So for now
Arnold, Wetzel, Algie and Cieniawa count their good days.
"Sometimes I worry, if I die, what will happen to my
family," says Arnold about her husband and two young
children. "Health care worker safety is a right, not an
option. . . . We have to remember, there are so many others.
Somewhere out there, someone’s been infected with a deadly
virus just because they went to work one day."
1998 The Washington Post Company
HEALTHCARE WORKERS SORE OVER NEEDLES FDA WON’T BAN
KIND THAT CAUSE MOST
Rocky Mountain News )
Tim Ulatowski, a
top official of the Federal Drug Administration, had been
speaking for about 15 minutes Tuesday when a wave of
frustration broke over him at a health-care worker safety
A nursing safety
expert asked how many hundreds of medical workers need to die
from contaminated needle sticks before the agency bans
standard needles and syringes that are causing the injuries.
When, a doctor
asked, is the FDA going to mandate the use of safety needles?
Another safety specialist accused the FDA of "weaseling
out" of its obligations to prevent injuries to workers
from medical devices. Although such outbursts were rare at the
two-day conference on the hazards of accidental needle
injuries, they served to illuminate the frustration expressed
by many health care workers: Despite more than 1 million
needle sticks and four such conferences in the past 10 years,
the government and hospital administrators have done little to
improve safety. It is a particularly urgent matter for many of
the participants at the conference. Needle sticks are
responsible for infecting tens of thousands of medical workers
with HIV and hepatitis viruses over the past decade. With no
solid, comprehensive proposals offered to solve the problem,
Murray Cohen, a former official of the federal Centers for
Disease Control and Prevention who organized the meeting, told
participants at the end of the conference that "we must
aim for zero injuries.’ ‘ But he left the attendees with
no clear outline of how that might be accomplished. Needle
manufacturers who attended the conference had their own
solutions, however. More than a dozen lined the hallways and
small meeting rooms at the Marriott hotel with exhibits - an
array of ingenious designs created to keep contaminated
needles from piercing the hands and fingers of medical
workers. Ulatowski, speaking at one of the conference’s
workshops, said he took great pride in the speed with which
his agency is approving new safety designs for the market,
pointing out that more than 250 such devices have been granted
But as for
mandating the use of safety needles and banning standard
needles, he said the agency is not even considering that step.
1998, Denver Publishing Co.
San Francisco Chronicle, HEALTHCARE WORKERS SORE OVER NEEDLES
FDA WON’T BAN KIND THAT CAUSE MOST INJURIES., Rocky Mountain
News, 08-13-1998, pp 55A.
Growing chorus of concern over the ‘silent’ epidemic
Carl T. Hall,
Chronicle Science Writer
Friday, August 7, 1998
Nearly 25 years have passed since Paul McVetty, now 44,
roamed the streets of San Francisco, shooting drugs, sharing
needles, embracing havoc with fellow runaways.
McVetty hit bottom, got clean, got married, launched a
career in the gourmet coffee business and moved to Marin
County. The wild times, it seemed, had left no scars.
McVetty is in the final stages of liver disease, a
victim of the quiet rampage of hepatitis C: a devilish
blood-borne virus that infects an estimated 4 million people
nationwide—four times the number of Americans infected with
the AIDS virus.
Although hepatitis C is hardly as fearsome a killer as
HIV, it cuts a much broader swath. Intravenous drug users are
its primary victims, but it has also hit such celebrities as
singer Naomi Judd and actor Larry Hagman. Baseball great
Mickey Mantle died of cancer after liver failure attributed to
both alcohol and Hepatitis C Virus, as it is known.
So quietly does the virus take its toll, it has long
been called "the silent epidemic." But the number of
deaths from Hepatitis C Virus is expected to triple within the next 10
years. And as the death count rises, so have the voices of
people like McVetty, one among thousands of recent recruits in
a swelling grassroots movement. The volume can only increase:
- One in every 65 Americans
harbors Hepatitis C Virus, which is spread through contact with infected
blood. Hepatitis C is the No. 1 cause of liver failure
leading to transplant; it is also a significant factor in
liver cancer and big trouble for those also infected with
HIV or the other hepatitis viruses, A and B.
- Officials in charge of the
nation’s blood supply have been sending alerts this year
to some of the 300,000 Americans who may have received Hepatitis C Virus-tainted
blood transfusions before 1992, when the first effective
screens against the virus were implemented.
- At least one class action
lawsuit is in the works amid complaints that the blood
supply warnings should have been sounded years ago.
- Hepatitis C Virus-related legislation has
been introduced everywhere from Washington, D.C., to state
capitols and city halls—including Sacramento and San
Francisco. Measures typically call for more government-led
research and public education, but big money has not been
- Although Hepatitis C Virus infections can
be treated, drugs are expensive, difficult to take and
help fewer than half of all patients.
- There’s no cure in sight.
"It’s a very dangerous virus," said state
Senator Richard Polanco, D-Los Angeles, sponsor of a
California measure, SB 694, that would direct state health
officials to set up Hepatitis C Virus-education programs. Against this
backdrop, doctors are reeling from an onslaught of public
concern, which they say has been veering dangerously close to
panic in recent months.
"It’s unbelievable," said Dr. Teresa Wright,
chief of gastroenterology at the San Francisco Veterans
Affairs Medical Center, where a large number of patients test
positive for Hepatitis C Virus. "I feel as if there’s a tsunami wave
about to land on my head."
One expert, Dr. Leonard Seeff, senior scientist at the
National Institutes of Health in Bethesda, Md., is calling for
a step back from "mass hysteria."
"I don’t believe for one moment that this is a
benign disease," Seeff said. "But my concern is, we
are going to provoke an enormous amount of potentially
Many organizers in the hepatitis C movement agree.
"We don’t need hype," said Ron Duffy, 46, a
substance-abuse counselor in Oakland who contracted Hepatitis C Virus from a
1972 transfusion while serving in Vietnam, and who now needs a
What activists say they do need, however, is troop
strength. And they’re getting it.
"People are finally waking up," said Brian D.
Klein, 40, an Hepatitis C Virus carrier helping to organize the fledgling
Hepatitis C Action and Advocacy Coalition, a group based in
San Francisco and inspired by the success of AIDS
organizations such as ACT UP. The group plans to protest what
members call price-gouging by the pharmaceutical industry.
In California alone, at least 40 patient-advocacy and
support groups have sprung up in recent years; group leaders
hope to forge a statewide coalition. Duffy, who in 1995
founded the Hepatitis C Virus Global Foundation in Oakland, expects to draw
about 1,000 people to a hepatitis C conference August 23-25 at
the Oakland Marriott City Center.
By all accounts, the state, with about half a million
Hepatitis C Virus carriers, is at the forefront of the grassroots response
to the disease. "It’s the next big epidemic," said
Bill Remak, a recent liver- transplant recipient and
coordinator of a Marin County support group sponsored by the
American Liver Foundation. "Every month, it seems a new
support group is starting up somewhere."
For years, hepatitis C did not even have a name. It was
known only as "non-A, non-B" hepatitis until the
late 1980s, when scientists at Chiron Corp., in Emeryville,
and the Centers for Disease Control and Prevention in Atlanta
managed to clone the virus.
Detectable only through antibody and genetic tests,
"hepC" was discovered to be a fast-changing
"survival machine," as one researcher called it.
Some people’s immune systems kill the virus. But an
estimated 85 percent of those exposed to Hepatitis C Virus become
chronically infected—almost invariably from a contaminated
needle or long ago blood transfusion. Over a 20-year period,
about 20 percent of the chronically infected develop
cirrhosis, scarring of the liver that can lead to liver
failure. A smaller number, perhaps 1 to 2 percent of those
infected, develop liver cancer. The rest die of something
People can contract Hepatitis C Virus from microscopic flecks of blood
left on a communal straw used for snorting cocaine. The virus
can linger on razors and toothbrushes.
It’s been found in small quantities in semen and other
body fluids besides blood, although most researchers say
it’s difficult to transmit through sexual activity unless
there’s blood contact: a possibility from rough sex, anal
intercourse or sex during menstruation or herpes outbreaks.
The only treatments available are the drug interferon, which
often has debilitating side effects, and an anti-viral called
ribavirin, recently approved for use in combination with
interferon. The treatments are costly—at least $700 a month
for interferon alone, and up to $1,440 a month for the
combination. Treatments often manage to quell the virus, but
it returns in the majority of patients. The overall success
rate for the new state-of-the-art combination therapy,
marketed by Schering-Plough Corp., under the brand name
Rebetron, is only about 45 percent.
Nor is there any vaccine for hepatitis C, as there is
for the other main viral culprits in liver disease, hepatitis
A and B. Chiron scientists are in the early stages of testing
one vaccine candidate, but Michael Houghton, the company’s
top Hepatitis C Virus expert, and one of the discoverers of the virus,
cautioned against getting hopes too high.
In the meantime, most carriers are not aware they harbor
the virus: symptoms typically do not appear for years, even
decades, while the microbe quietly destroys the liver.
It is this insidiousness—and the vast numbers of
people carrying Hepatitis C Virus --that has health experts concerned.
Up to 90 percent of intravenous drug users, for example,
test positive for the virus. Hepatitis C Virus infects close to half of the
California state prison population. The chance of contracting
it from a single accidental needle-stick is as high as 1 in
10, far worse odds than contracting HIV, making it one of the
biggest occupational threats faced by health-care and
In San Francisco, the AIDS virus is still a worse health
problem by far. It infects about twice as many people as the
13,000 estimated to carry Hepatitis C Virus. But deaths from hepatitis C are
rising while AIDS deaths are in decline throughout the United
States. Coinfections are increasingly common. "These are
both health crises, and Hepatitis C Virus is now becoming a major public
health threat," said Supervisor Gavin Newsom, sponsor of
a San Francisco resolution that directs local public-health
officials to devise a plan to deal with the growing crisis.
"We need to be much more aggressive in reaching out to
people who might be affected," Newsom said. That
sentiment was also expressed by former Surgeon General C.
Everett Koop, who during recent congressional testimony warned
of a surge in liver disease for which the medical
establishment is woefully unprepared. "We are at the edge
of a very significant public health challenge," said Koop,
who called for a high-profile public-education effort and
coordinated federal attack. The response so far has been
disappointing, activists say. Leaders of frontline
organizations like the American Liver Foundation are lobbying
for a $56 million increase this year in the $46 million
National Institutes of Health budget for hepatitis A, B and C
research. Other organizers are directing their energies at
persuading more people likely to carry the virus to get tested
for Hepatitis C Virus, both to limit spread of the disease and improve their
chances with drug treatments, ineffective though they may be.
If they hadn’t been pressured, meanwhile, federal
authorities might never have started the "lookback"
study, in which local blood banks around the country are
digging through donor records and attempting to notify anyone
who might have received tainted blood in long-ago
transfusions. The effort marks the first time authorities have
gone out looking for those who may be infected.
Blood Centers of the Pacific in San Francisco, for
example, which provides blood to 35 hospitals in Northern
California, was able to identify about 400 possibly
contaminated units of blood.
Dr. Nora Hirschler, the blood bank’s medical director,
defends the seemingly long time it took health authorities to
send out the notices. For one thing, she said, it was not
clear that much could be done, since there are no surefire
treatments for the disease.
"Before you embark on something like this, you need
to be sure you can do something to help people," she
Such rationales do not wash with those warring in the
trenches. "People should have been notified long ago that
they may be a walking time bomb," said Carol Craig, an
Orange County organizer who believes she became infected with
Hepatitis C Virus while working as a medical assistant. She noted that virus
carriers may be unwittingly infecting members of their family
by such innocuous behavior as sharing razors with teenage
children or having sex during menstrual periods, although
statistics suggest the risk of household transmission is not
"It’s hard to be urgent without being shrill, but
right now we need to make a strong and urgent point about this
disease," she said. For many years, Hepatitis C Virus inspired little
urgency. The disease moved too slowly. It did damage too
discretely. It affected too wide a populace: People who did
not easily coalesce into a social movement. By comparison,
contracting HIV was almost immediately seen as a virtual death
sentence. Healthy young people became wasted shells. The
disease devastated a politically active gay community.
Now, the Hepatitis C Virus picture is similarly finding focus. A vast
group of carriers contracted the virus in the freewheeling
‘60s and early ‘70s, when it was unknown and the culture
fostered high-risk behavior. "Those are the people now
beginning to get ill," said Alan P. Brownstein, president
of the American Liver Foundation. "Those are the people
dying, and given the vast reservoir of carriers, more and more
people are going to die unless something is done now."
Which is why so many people, from still-healthy carriers
to those near death, are joining the Hepatitis C Virus movement. Like
McVetty, who four years ago began reeling from depression and
fatigue that his doctors could not explain, they now know what
they have: a war on their hands. "We need to get out
there and fight," said Alan Franciscus, 49, a leader of
the HepC Support Project in San Francisco. "Because
nothing’s going to happen if we don’t."
KILLER\ HEPATITIS C SLOWLY DESTROYS LIVER
( The Arizona
The Age of
Aquarius is coming back to haunt its flower children.
Young people who
reveled in the hedonism of the 1960s and ‘70s are
discovering that the legacy of those years is a devastating
and sometimes fatal disease now reaching epidemic proportions.
Little did they
know that intravenous drug use, tattoos and body piercing
would be an invitation to a slow-growing virus that eventually
would become the recently identified hepatitis C.
Like other forms
of hepatitis, the C variety inflames the liver, causing
debilitating symptoms or, even more frightening, virtually no
symptoms until the disease is on the eve of destruction.
The risk of
contracting hepatitis C continues today. Foolhardy people
still pierce, tattoo and inject themselves with unsterile
needles. Unsafe promiscuous sex can put partners in danger.
Health-care workers who suffer accidental needle sticks must
be on guard.
In the future,
these people, too, could begin to feel the effects of the
patients who received blood transfusions before 1992, before
testing of the blood supply was refined, who are the target of
an intense public-education campaign spearheaded by the office
of the U.S. surgeon general, Dr. David Satcher.
office has urged organizations such as the American Red Cross,
hospitals and blood banks to notify pre-1992 blood recipients
and recommend they be tested for hepatitis C.
contacting that population will be a daunting but worthwhile
task, doctors say. Though critics have questioned the
cost-effectiveness of alerting people to a disease that can be
treated in less than half of all cases, health-care advocates
insist patients have a right to know their health status and
that withholding information is disgraceful.
preposterous," says Dr. Michael Altman, a Phoenix
gastroenterologist, president of the Arizona chapter of the
American Liver Foundation. Although conceding that better
treatments are needed, he says he can offer patients hope.
"Why would you not want to know?"
Only about 5
percent of patients refuse medication, he says.
Even those who
cannot be cured must be informed on how to manage their
disease and how to avoid transmitting it. They should drink no
alcohol, be scrupulous about protecting others from infection
and maintain good nutrition.
hepatitis C has been around is anybody’s guess. It may have
its origins in World War II, where unsterile battlefield blood
transfusions could have spread the virus.
non-A, non-B hepatitis because its specific virus couldn’t
be differentiated from other strains, it wasn’t identified
until 1975. A blood test wasn’t developed until 1989.
That blood test
remained unreliable until 1992.
A (transmitted through unsanitary food preparation) and
hepatitis B (spread through blood and sexual contact), for
which there are vaccines and effective cures, the C strain
becomes chronic in 85 percent of cases.
It is the
leading cause of cirrhosis, which scars the liver and inhibits
the number of infected Americans at 4 million. Cases of HIV,
the virus that causes AIDS, number only 1 million. Although
deaths from the human immunodeficiency virus are declining,
fatal cases of hepatitis C are rising, expecting to triple in
the next 10 years.
Yet HIV has
enjoyed much more media and medical attention. Doctors who
work with hepatitis C patients are dismayed by such
the furor raised over HIV," says Altman, the Phoenix
gastroenterologist. "(Hepatitis) C has been
three-fourths of all victims of hepatitis C are unaware they
carry the disease. Many show no signs of infection.
hepatitis C reaches its end stage, it becomes the leading
reason for liver transplants. More than 4,000 transplants are
performed each year, and 10,000 names are on the waiting list.
About 1,000 patients will die while waiting.
diseased kidneys can be assisted by dialysis, no machine can
perform the functions of the liver.
But at a hefty
4.5 pounds, the organ has a lot of reserve, says Dr. David
Leibowitz, gastroenterologist and chairman of the department
of medicine at Good Samaritan Regional Medical Center.
the liver’s large capacity allows it to quietly harbor
disease for many years without signaling its deterioration.
When the silence finally is broken, the patient may experience
fatigue, malaise, flulike symptoms, weakness, jaundice.
symptoms indicating advanced disease include fluid retention
in the ankles and abdomen, confusion, increased risk of
bleeding, intestinal bleeding.
Until a routine
blood test picks up elevated liver enzymes, problems may go
undetected. Only a specific blood test will identify hepatitis
is to catch hepatitis C early," says Dr. David Douglas, a
liver specialist at Mayo Clinic Scottsdale. "We hope to
catch people before they develop cirrhosis. . . . It is a very
silent, progressive disease."
director of the Mayo liver clinic and medical director of the
liver transplant program, which is just getting under way.
conducting several research protocols on hundreds of hepatitis
C patients. Age of the patients ranges from people in their
20s to those in their 80s and 90s.
hesitate to call treatments for hepatitis C "cures"
- scattered bits of virus may remain, says Leibowitz of the
Good Samaritan Regional Medical Center - medication does offer
some hope. Currently, the drug of choice is interferon, which
produces remission or suppression of the virus in about 20
percent of cases. That means liver enzymes appear normal and
the virus cannot be detected.
delivered in self-administered injections three times a week
for 12 to 18 months. Some patients tolerate the drug well.
Some experience serious physical and emotional side effects,
In June, the
U.S. Food and Drug Administration approved use of another
drug, ribavirin, which in combination with interferon boosts
recovery rates to 40 percent.
significant," says Douglas of Mayo Clinic Scottsdale.
combinations of drugs, called cocktails, are proving to be
sound methods of treatment for diseases such as hepatitis C
that more drugs, including anti-viral agents, will be
developed and used to battle hepatitis C in the next three to
laboratory in California also is working on a vaccine, says
Good Samaritan’s Leibowitz, that could be used one day to
immunize all newborns in the same way infants are currently
vaccinated against hepatitis B.
"universal" vaccines are "the way to go,"
Education is the
key to managing hepatitis C now, Douglas says.
been trying to raise public awareness of hepatitis C," he
aren’t aware of liver diseases in general."
The dilemma with
the current epidemic, says Phoenix gastroenterologist Altman,
is "how do we go about educating people without alarming
or frightening them?"
Liver Foundation is committed to supporting research and
informing the public about liver diseases. The foundation
lobbies Congress for funding and works with the National
Institutes of Health.
In the Valley,
the Arizona chapter of the Liver Foundation sponsors monthly
support groups for patients, hosts seminars for patients and
primary care physicians, and conducts programs in schools that
alert children to the dangers of drug and alcohol abuse.
Altman, who also
participates in research studies, is optimistic about the
treatment of hepatitis C.
rapidly evolving therapeutic arena," he says. "I
tell my patients to call me every six months. We’re all
frustrated by having a 20 percent cure rate (with interferon
alone), but it’s the best we’ve got right now.
Arizona Republic (1998)
By Barbara Yost,
The Arizona Republic, SILENT KILLER\ HEPATITIS C SLOWLY
DESTROYS LIVER., The Arizona Republic, 08-20-1998, pp HL1.
Hepatitis C epidemic to spread, Sydney Morning Herald
By DARREN GRAY
The often fatal
hepatitis C virus is running rampant through some sections of
the community, presenting Australia with one of its most
significant public health concerns of recent years.
research just published in the prestigious British Medical
Journal shows intravenous (IV) drug users and former prisoners
are at a particularly high risk of contracting the blood-borne
IV drug users
aged under 20 had a 75 per cent chance on average of
contracting the disease within 12 months, the study found.
yesterday predicted that the hepatitis C epidemic would worsen
and urged Australian governments to do more to stop its
spread. While public health efforts to limit HIV spread had
worked, they were inadequate for hepatitis C, they said.
It is estimated
that 190,000 Australians are living with hepatitis C; about
145,000 of them are thought to be chronically infected. Last
year alone there were about 11,000 new hepatitis C infections.
The virus is
largely spread through IV drug use, with needle-sharing the
major avenue of transmission. The virus had also been spread
by blood transfusions before 1990, and by needlestick
injuries. On rare occasions it is transmitted from mother to
The test to
detect hepatitis C only became available in 1990.
In the study,
one of the largest of its type conducted in Australia, Sydney
researchers investigated nearly 1,200 IV drug users seeking
lead investigator, Dr Ingrid van Beek, said the findings were
alarming: "The long-term health burden implications of
that group of young people becoming infected with hepatitis C
will be felt by this community in years to come.
increasing injecting drug use across the world and that’s
coinciding with this ongoing epidemic in hepatitis C."
Hepatitis C can
lead to serious health threats such as cirrhosis (a chronic
degenerative disease of the liver) and liver cancer.
Dr van Beek and
colleagues found a high incidence of hepatitis C in the drug
users but a low incidence of HIV infection. The hepatitis C
virus is both more infectious and more prevalent in the
Australian community than HIV. It is estimated that about
11,000 Australians are living with HIV/AIDS, compared with
nearly 200,000 living with hepatitis C.
It is estimated
that up to 20 per cent of long-term sufferers will die from
hepatitis C. But it does not become a chronic condition in all
Australia’s leading hepatitis researchers, Dr Nick Crofts,
said there was a high incidence of the disease in marginalised
groups such as young Vietnamese drug users, rural IV drug
users and the Aboriginal population.
Also, a much
greater effort was needed to fight the spread of the virus in
prisons and juvenile justice centres.
all our efforts to stop blood-borne viruses there’s still
evidence of continuing spread, at up to very high rates in
some subgroups," he said. "There are some
indications that the spread is coming down, but it’s still
at unacceptably high rates."
The director of
gastroenterology at St Vincent’s Hospital in Melbourne, Dr
Paul Desmond, warned that 80 to 90 per cent of people who get
hepatitis C have the virus long-term.
Dr Desmond said
the investigation was solid research and a warning against IV
drug use. "IV drug using is common amongst kids, it’s
common amongst all social classes, and there’s a high risk
of getting hepatitis C from even recreational drug use,"
PAYING THE PRICE
FOR PRECARIOUS LIFESTYLE OF PAST
( The Arizona
Maria Ward had
been sick since 1987.
Once an avid
cyclist who rode 40 miles a day to her job running a
California bed-and-breakfast, Ward no longer could get out of
bed. Debilitating fatigue forced her to abandon the B&B.
For three to
four months, she would feel well. Then the fatigue would
return with a vengeance, knocking her flat for two weeks to
devastated me financially," she says.
chronic back problems, gastrointestinal disorders, recurrent
yeast infections, fever and night sweats, excruciating muscle
I was going crazy. I thought I was insane," says Ward,
41, who now lives in Phoenix. "You lay in bed and cry
because your entire body hurts."
She was treated
for countless diseases but continued to languish.
For almost five
months in 1994, she couldn’t keep food down and lived on
liquid supplements sipped a few tablespoons every hour. Her
weight slipped from 135 to 102.
treated her for reflux disease, she improved some and
subsisted on a liquid diet. She was still far from healthy.
The next year, a
holistic doctor told her she had liver disease. But she tested
negative for what ultimately would be her diagnosis: hepatitis
C, once known by the vague label "non-A, non-B"
For perhaps 20
years, she would learn, the hepatitis C virus had been preying
on her body, causing chronic inflammation of her liver, an
organ whose job is to detoxify and discard products produced
in the body. It also manufactures proteins, clotting factors
gastroenterologist finally diagnosed the disease in June 1996.
which experts say is reaching epidemic proportions, has become
the leading reason for liver transplants. Such celebrities as
daredevil Evel Knievel and singer Naomi Judd - a former nurse
- have hepatitis C. Rock singer David Crosby underwent a liver
transplant in 1994 after fighting alcoholism and hepatitis C.
How could Ward
have contracted such a nasty disease?
Hepatitis C most
often is passed from person to person by way of blood
transfusions, intravenous drug use, unsterile needles used in
body piercing or tattooing, accidental needle sticks by
health-care workers, and, to a lesser extent, unsafe
Ward says that
in her younger days, she dabbled in marijuana and cocaine.
Snorting cocaine can rupture tiny blood vessels in the
nostrils and allow tainted blood to be passed when coke straws
She has a
Ward also has
discovered that several former friends who were patients of
her dentist in California have come down with hepatitis C. Did
unsterile dental equipment convey the virus?
She may never
know the cause of her disease, but her concern now is to keep
it at bay and ward off the worst of liver ailments - cirrhosis
produces scarring of the liver tissue and prevents it from
performing its detoxification duties.
Ward has just
finished a year of treatment on the only drug that works on
hepatitis C: interferon. She calls it her "year in
hell." Used alone, interferon results in remission in
about 20 percent of cases.
an experimental program at Mayo Clinic Scottsdale, she has
been giving herself injections of interferon three times a
week. She also has been taking a pill that may be a drug
called ribavirin, which can boost the effectiveness of
interferon and double its cure rate.
Because she is
in a double blind study, she may have been taking a placebo.
For some people,
interferon treatment can be nearly as devastating as the
disease it’s meant to cure.
like you have the flu all the time," says Ward, who has
battled lethargy, clogged saliva glands, chronic yeast
infections, urinary-tract infections and depression - all
because of the treatment.
that her illness is in remission. If the interferon ultimately
proves ineffective, however, she would begin a second course.
Treatment is a
financial burden. Ward lives with her elderly mother, who is
blind and has cancer, and depends on public assistance. She is
hoping to find a job and obtain Social Security disability
To bolster her
emotional state, she attends a support group for hepatitis C
patients but says that can be troubling. Although she receives
solace from group members, dealing, in turn, with their woes
She would like
personal counseling but can’t afford it.
give up anything to be able to speak one-on-one with a
counselor once a week," she says.
condition has improved, Ward fears a relapse.
I’m in remission, I feel I’m going to get better,"
she says. "But what happens six months from now?"
At one time,
Ward felt guilty about her disease.
I was a horrible person because I contracted hepatitis
C," she says.
have been emotionally and financially supportive, but some
relatives refuse to visit her, believing they will become
infected. That is hurtful, Ward says, and adds to the stigma.
Now, noting how
many other people have hepatitis C - an estimated 4 million
representing all walks of life - she no longer feels shame,
which has given her the courage to counsel others.
advocates for patients seeking transplants, though she has
decided that she would not undergo transplant surgery herself
if her condition deteriorated.
personal choice," she says. "This is the way I came
into the world, and this is the way I’ll leave this world. .
this disease. I didn’t want it, but I have it, and I have to
live with it."
Arizona Republic (1998)
By Barbara Yost,
The Arizona Republic, PAYING THE PRICE FOR PRECARIOUS
LIFESTYLE OF PAST., The Arizona Republic, 08-20-1998, pp HL1.
Arizona Republic (1998)
By Barbara Yost,
The Arizona Republic, PAYING THE PRICE FOR PRECARIOUS
LIFESTYLE OF PAST., The Arizona Republic, 08-20-1998, pp HL1.