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News (Media Awareness Project) - US: Hepatitis C Growing Chorus of Concern Over the 'Silent' Epidemic
Title:US: Hepatitis C Growing Chorus of Concern Over the 'Silent' Epidemic
Published On:1998-08-07
Source:San Francisco Chronicle (CA)
Fetched On:2008-09-07 04:00:16
HEPATITIS C GROWING CHORUS OF CONCERN OVER THE `SILENT' EPIDEMIC

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.

Until now.

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 HCV, 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 HCV 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 HCV, 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
HCV-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.

- -- HCV-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 forthcoming.

- -- Although HCV 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 HCV-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 HCV. ``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 unwarranted anxiety.''

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 HCV from a 1972 transfusion while serving in
Vietnam, and who now needs a liver transplant.

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 HCV 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 HCV 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 HCV carriers, is at
the forefront of the grassroots response to the disease.

``It's the next big epidemic,'' said Bill Remak, a recent livertransplant
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 HCV 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
unrelated.

People can contract HCV 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 HCV 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 HCV

- --that has health experts concerned.

Up to 90 percent of intravenous drug users, for example, test positive for
the virus. HCV 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
emergency workers.

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 HCV.
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 HCV 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 HCV, 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 said.

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 HCV 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 very high.

``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, HCV 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 HCV 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 HCV 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.''

HEP C HELP

PREVENTION: Don't share needles. Don't share straws or other such things to
inhale drugs. Implements like toothbrushes could also transmit HCV if they
contain blood. The risk from sexual activity is very low unless it involves
multiple partners and blood contact. There is no risk from casual contact.

IF YOU GET IT: Don't drink alcohol. Get vaccinated against hepatitis A and B

- --coinfection makes the prognosis worse. Cirrhosis, if it occurs, may take
decades to appear.

WORST CASE SCENARIO: Liver damage can be so severe that a transplant is
necessary -- but about 9,300 people are already on the waiting list. About
1,000 people die waiting each year.

TO BE TESTED NOW: See your doctor. Call 1-800-Go-Liver, the American Liver
Foundation's toll-free hotline, to find local support. Most HMOs provide
free antibody tests to those who ask, as do many public health and drug
treatment clinics. Private clinics usually charge about $150 for initial
testing.

FUTURE TESTING: Home Access Health Corp., which offers a self-administered,
mail-in test and counseling-referral service for the AIDS virus, has a
similar test for hepatitis C in clinical trials. If approved, the $40-$50
service could be available next year.

Source: American Liver Foundation, Centers for Disease Control, Chronicle
research

HOW HEPATITIS C VIRUS ATTACKS

Once it gets in your bloodstream, the hepatitis C virus finds its way to
the liver. There it replicates, causing inflammation as the body's immune
system mounts a defensive attack. Chronic inflammation leads to scarring,
or cirrhosis, the seventh-leading cause of death in the United States and
fourth-leading cause for those between the ages of 25 to 44.

- -- Healthy Liver

The largest organ in the body -- the liver is a filtration system
storehouse and biochemical factory. A healthy, supple liver is an efficient
filtration system and elaborate biochemical refinery. It removes toxins
from the blood, converts and stores blood sugar, manufactures vital
proteins, regulates blood clotting, produces bile and other digestive
enzymes and hormones.

- --Chronic Infection

When the Hepatitis C virus takes up extended residence in the liver, it
quietly reproduces for many years, often without causing any outward
symptoms or illness. But chronic inflammation is toxic to healthy cells,
leading to cell death and formation of abnormal nodules and scar tissue.

- --Liver failure

By the end of the disease process, extensive scarring, known as cirrhosis,
and cell death impairs normal liver function. The organ shrinks and
hardens. At this point, the only treatment option is a liver transplant

- --and there aren't enough healthy organs to meet the demand.

Source: American Liver Foundation, Schering Plough Corp.

DEADLY ALPHABET . HEPATITIS A New cases each year in U.S.: 140,000.
. Chronic infections: Hepatitis A does not cause chronic disease. . How
it's spread: Oral-fecal contact, often from eating contaminated
foods or drinking unsafe water. . Risk factors: Close contact with an
infected person, day care employment, travel to developing countries. .
Symptoms: Usually none in children; in adults common symptoms
include fatigue, fever, jaundice. Infections usually resolve within about
2-6 months. . Prevention: Wash hands after going to the toilet and
before handling food. Two vaccines are available for adults and children
over age 2. - - - HEPATITIS B New cases each year in U.S.: 300,000,
but only 18,000 to 30,000 new chronic infections. . Chronic infections:
1 million to 1.25 million. . How it's spread: Contact with
infected blood or other body fluids. Infected mothers can infect newborns.
Prevalent in Asia and first-generation Asian immigrants in U.S. . Risk
factors: IV drug use, unsafe sex with multiple partners,
tattooing/piercing with contaminated instruments, accidental needle-sticks.
. Symptoms: Possible flu like malaise, fever, jaundice during
initial acute phase. Symptoms usually abate in 4-6 weeks without long-term
complications. In 5-10% of cases, chronic infection develops, which
sometimes leads to serious liver damage. . Prevention: Vaccination,
safe-sex practices, don't share razor blades or toothbrushes. - - - - .
HEPATITIS C New cases each year in U.S.: 30,000, of whom 85 percent
develop chronic infection. . Chronic infections: 4 million How
it's spread: Contact with infected blood. Difficult to transmit
sexually or to newborns by infected mothers. . Risk factors:
Transfusions before effective blood-screening began in 1992; IV drug use;
needle-sticks; sexual contact with multiple partners. . Symptoms:
Same as hepatitis B, except for higher incidence of long-term infections,
which can lead to permanent liver damage. Complications from hepatitis C
infections cause 8,000-10,000 deaths a year. . Prevention:
Same as hepatitis B except no vaccine available. . Source: Hepatitis
Foundation International CHRONICLE GRAPHIC
---------------------------------------------------CHART (2):
BC:09

WORSE THAN AIDS? While AIDS deaths are dropping, Hepatitis C
mortality could triple in the next 10 years. Here are some current
comparisons for the U.S.: . Hepatitis C AIDS/HIV New infections per
year 30,000 40,000 Total Infected 3.9 million 750,000 Percent aware
of infection 5-20 percent 66 percent09 Deaths per year 8,000 to 10,000
29,398(x) . (x) - Latest figures for 12-month period ending June 30, 1997.
. Source: Centers for Disease Control; C. Everett Koop, March 5, 1998
congressional testimony; AIDS Action. CHRONICLE GRAPHIC 1998 San
Francisco Chronicle Page A1

Checked-by: (Joel W. Johnson)
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