a quarterly training newsletter from the Hepatitis C Support Project
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Vol 8: April, 2005
Table of Contents
One Person's Perspective
Lucinda Porter, RN, BA, CCRC
IN THE COURSE OF WORKING
with others, sometimes we
encounter beliefs that differ
radically from our own.
Some differences may seem
downright absurd. Patients
have told me about a variety
of ways they have tried to
restore their health. These included
eating raw pig liver,
drinking one’s own urine,
and wearing various objects.
The fact that I use these examples
exposes my biases. In
short, I have a hard time believing
that these approaches
will positively influence
anyone’s health. They also
may be dangerous, particularly
if a patient simultaneously
It is human to form judgments.
However, nothing will
shut down effective communication
more quickly than
reacting with disapproval. It
is unlikely that a client will
reveal much if it is thought
that the disclosure will be
met with criticism. As health
educators and community
outreach workers, our professional
and compassionate responsibility
is to leave our
judgments aside and to
maintain open lines of communication.
I am not suggesting
that we endorse or
support a health practice that
we don’t believe in or agree
with. What I am saying is that
we must maintain respect
and compassion while putting
A mentor once said “be
careful not to take away
anyone’s image of God unless
you offer something better
to replace it with.”1 This
concept may apply to other
belief systems, such as beliefs
about health. The power
of belief may produce its own
kind of medicine. A good
example of this is the placebo
effect. A placebo is a
pill or treatment that has no
treatment value. It is used in
research when studying
something of potential therapeutic
value. Research has
shown that patients who believe
a medication will work
can have positive results if
they believe they are taking
the active study drug, even
if that medication is basically
a “sugar pill.”
The reverse is also true.
If patients doubt the therapeutic
value of a drug, their
thinking may influence the
effectiveness of that medication.
The belief can be negative
or positive, as in trusting
or doubting the ability of a
treatment to succeed. If a
medical provider maintains
certain beliefs about a
therapy, this may influence
the outcome of that treatment.
We give subtle, unconscious
cues to patients.
Belief can’t always influence
an outcome. In other
words, sometimes a medication
won’t work because it
just isn’t going to work.
Other times a placebo might seem effective when there may
be other factors at play. The ability to use one’s mind to
influence matter is not reliable. It’s important to guard against
the belief that we can think our way through any situation or
disease. If that were true, we wouldn’t need the medical profession
and we would live forever. And although the mind is
a powerful ally, we can use this concept against ourselves if
things don’t work out the way we hoped. We may be tempted
to blame ourselves for not being positive enough. This thinking
just makes us feel bad and feeling bad about ourselves is
counterproductive—moving us further away from health.
So how do we support those whose beliefs differ from
our own, especially if that someone is practicing a behavior
that is potentially dangerous? Start by examining your own
ego, and motives, along with your own belief systems.
Knowledge is power and it can be tempting to use that power
to try to influence others. If you are well-educated, you have
been given a gift, but even a fabulous education does not
give anyone the right to exercise personal power over others.
Ask yourself if you believe your education and knowledge
have bought you the right to influence others. I don’t
believe so. My opinion is that relationships are built on trust
and trust needs to be earned. Knowledge can be a tool to
help build that trust. Knowledge can also be the step used
after trust is earned. But without trust there is no place for
knowledge to take root.
Also check to see if your own ego is invested in the process.
Look very carefully here. It may seem perfectly innocent
to say our goal is “to help people” but sometimes this
motive can be a disguise for our own egotistical drives. We
all have egotistical tendencies. However, if you believe in
client-centered healthcare, then leave your ego out of the
Now let’s look at some practical matters. Say that your
client has just told you that she heard that eating fresh butterfly
wings every day will cure hepatitis C (HCV). She asks
you for your opinion on this. First and foremost, do not laugh
or let your face register any horror. If you do react, promptly
explain that although you have trouble believing the idea
will work, you are not laughing at her. Only say this if it is
the truth. If the picture of your client prancing around meadows
with a butterfly net is just too much to bear, you may
have to excuse yourself for a minute in order to recompose
Here are some suggestions on how to stay composed:
• Tell yourself that this patient may be frightened. Fear
can drive people to consider desperate measures.
• Keep in mind that your client is looking for a way to exercise power over her health. She may be in pain,
dying, or afraid she may be dying.
• Put yourself in your client’s shoes. How would you
feel if you consulted a professional and they sneered
at one of your questions or ideas?
• Remind yourself that the client is in control of her
wellbeing. Your client is free to accept or reject your
advice. You may have the power to influence her
choices, but ultimately not the control. If you bruise
the relationship by being judgmental, you will lose the
power to inspire change.
• Caution yourself that although you believe the idea has
no merit, you really don’t know for sure until you
research the idea.
• If it is too difficult for you to maintain a compassionate
and professional composure, refer the client to some
one else. However, before doing that, contact your
referral and see how they feel about the particular
situation. Before contacting your referral, make sure
you comply with your agency’s privacy disclosure
regulations, particularly HIPAA2.
It may be useful to find out how the client acquired this
notion. For instance, if it was something that the owner of
the local health store told her, I might volunteer that I personally
don’t act on advice from people who work in retail.
I figure that they are in the business of selling products. They
may believe in the products they sell, the products may be
excellent, and perhaps they even work, but I don’t act on the
opinion of salespeople or manufacturers. I prefer to act on
independent research. I suggest the client return to the source
of information and try to obtain some resources on the subject.
In short, I use the opportunity to teach some critical thinking.
If there are cultural reasons for the use of butterfly wings, I tread very carefully. Many cultures have their own beliefs
that have been around for centuries. Being judgmental of a
cultural practice can really damage a relationship.
I would proceed by telling the client what I know about
the subject. If I know absolutely nothing, I readily admit that.
However, if I actually know something, then I will discuss it.
If the client asks me to find out more about the effect of
butterfly wings on HCV, then I will try to do this. If I don’t
have the time to do this, I encourage the client to do her own
research. Some communities and hospitals have health
libraries and resource centers. Public libraries usually offer
free Internet service. I may offer to review any literature
that she obtains.
At no time do I convey any disapproval. My goal is to
build trust and then, when the client is ready, she may take
my advice. I try to keep my approach as non-threatening as
possible. Since belief is a powerful force, I want to be included
in the client’s belief system.
There is an old joke that says what is written on the
hypochondriac’s tombstone is, “See? I told you I was sick.” This joke goes a step further than mere amusement, it
imparts a little wisdom. Perhaps the cause of death for the
hypochondriac was aided by a negative belief system. Or
perhaps the hypochondriac’s time was up. We’ll never know.
1 This may have been first said by Sigmund Freud, but I was unable to
find any documentation to support this.
2 HIPAA stands for the Health Insurance Portability and Accountability
Act of 1996. HIPAA regulates how health organizations handle patient
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NEW FDA APPROVALS FOR VIRAL HEPATITIS
On February 25, the Food and Drug Administration (FDA)
approved Roche's Pegasys brand of pegylated interferon plus
ribavirin (Copegus) for the treatment of chronic hepatitis C
in patients coinfected with HIV. The approval was based on
data from the APRICOT trial showing that 40% of 868 HIV/
HCV coinfected subjects treated with Pegasys plus ribavirin
achieved sustained virological response with a 48-week
course of therapy (29% for genotype 1; 62% for genotypes
2 and 3). This is the first hepatitis C treatment to be approved
for coinfected individuals; the combination was also recently
approved in Europe.
The following month, on March 29, the FDA approved
Bristol-Myers Squibb's nucleoside analog entecavir (brand
name Baraclude) for treatment of chronic hepatitis B in
adults with active HBV replication plus either persistently
elevated ALT or histological evidence of liver disease progression.
Studies have shown that entecavir lowers HBV
viral load more than lamivudine (Epivir-HBV) in subjects
with hepatitis B alone, and is also effective in HIV/HBV
coinfected patients previously treated with lamivudine. Full
prescribing information for entecavir is available at
PEGYLATED INTERFERON FOR HEPATITIS B
According to a large international study, a mainstay
of hepatitis C treatment also works against chronic
HBe-Ag-positive hepatitis B. As reported in the January 8
issue of The Lancet, Schering-Plough's Peg-Intron brand
pegylated interferon produced sustained response rates "as
high as or higher than that reported for any other therapy" for HBV. In this study by H.L. Janssen and colleagues, which
included 300 subjects in 15 countries, patients receiving both
Peg-Intron and lamivudine achieved comparable virological
response rates six months after the end of therapy (35% vs
36%, respectively), although subjects in the combination arm
were more likely to experience an end-of-treatment response.
As is true for HCV, response rates varied according to
HBV genotype. Another study, reported in the February 15
Annals of Internal Medicine, found that the Peg-Intron/
lamivudine combination was more effective than lamivudine
monotherapy (SVR 36% vs 14%, respectively). Roche's
Pegasys was recently approved in Europe for the treatment
of chronic hepatitis B; U.S. approval is expected later this year.
SEXUAL TRANSMISSION OF HCV
The issue of sexual transmission of hepatitis C continues to
generate controversy. Most studies show very low rates of
sexual transmission within monogamous heterosexual
couples, but the picture remains less clear for men who have
sex with men (MSM). In the past year several new HCV
infections among gay and bisexual men in the U.K. and
France have been potentially linked to sexual activity. At
the 2005 Conference on Retroviruses and Opportunistic Infections
(held February 22-25 in Boston), researchers from
Necker Hospital in Paris presented data on a cluster of 12
HIV positive men diagnosed with recent HCV infections.
Male-to-male sex was "the only significant risk factor" reported.
Ten out of the 12 had genotype 4d, suggesting a common
source of infection. Also, in a study of 1,347 initially
HCV negative heterosexual subjects and 1,542 gay or bisexual
men in the Swiss HIV Cohort, the HCV incidence
rate was 0.2 per 100 person-years among the heterosexuals
and among gay or bisexual men who did not report unprotected
sex. But among the gay or bisexual men who did report
unprotected sex, the rate was 0.7 per 100 person-years.
However, in the largest study to date of HCV transmission
among MSM, researchers in Montreal found little evidence
that sex plays a role. They looked at 1,085 men tested
for HCV between January and September 2001. Most (92%)
reported anal sex and a majority (63%) reported unprotected
anal sex; more than 40% reported at least 50 lifetime sexual
partners. Within this sexually active group, only one new
HCV infection was detected during the eight-month followup
period (an incidence rate of 0.038 per 100 person-years),
occurring in an injection drug user who reported sharing
needles. After controlling for injection drug use, sexual behavior
was not significantly associated with hepatitis C. The
researchers concluded that, "Sexual transmission of HCV
among MSM appears to be rare."
COINFECTION AND DISEASE PROGRESSION
Another issue that has provoked ongoing debate is whether
HCV infection worsens HIV disease progression. While
some studies suggest that coinfection accelerates immune
system decline and progression to AIDS and death, others
have reached the opposite conclusion. In a prospective study
of the Women and Infants Transmission Study cohort (published
in the March 15th Clinical Infectious Diseases), which
enrolled 652 pregnant women with HIV (29% coinfected
with HCV) between 1989 and 1995, R.C. Hershow and colleagues
found that HCV/HIV coinfected women did not
experience faster HIV disease progression. The coinfected
women had viral loads similar to those of women with HIV
alone, and had slightly higher CD4 cell percentages. The
researchers concluded, "In this large cohort of HIV-infected
women, we found no evidence that hepatitis C virus coinfection
hastens progression of HIV disease."
On the other hand, evidence continues to accumulate that
HCV-related liver damage progresses faster in people with
HIV. At the February Retrovirus conference Mark Sulkowski
and colleagues presented some of the clearest evidence yet
that liver disease can progress surprisingly fast in HCV/HIV
coinfected individuals. They followed 67 coinfected subjects
who received paired liver biopsies an average of two
years apart. More than one-quarter (28%) had fibrosis scores
that increased by at least two stages from one biopsy to the
next. Patients who experience a two-stage or greater increase
in fibrosis score were more likely to have higher HIV viral
loads, but there was no significant association between rapid
progression and use of anti-HIV therapy or CD4 count. The
researchers said their data "do not support the application of
current HCV treatment guidelines"—which state that people
with minimal fibrosis generally can defer hepatitis C
therapy—to coinfected individuals, and recommended
that "such patients should be closely monitored for liver
RISK FACTORS FOR LIVER CANCER
Several recent studies have looked at various risk factors for
hepatocellular carcinoma (HCC), a type of liver cancer linked
to chronic viral hepatitis. Among them: alcohol, tobacco,
and obesity, which appear to interact in a synergistic way. In
a study published in the February 2005 Journal of
Hepatology, Jorge Marrero and colleagues reported that alcohol
ups the risk of HCC by 6-fold, tobacco by 5-fold, and
obesity by 4-fold. A study in the April 2005 issue of Gut found that diabetes is associated with a 2- to 3-fold increase
in HCC risk. Obesity, insulin resistance, and diabetes are
associated with steatosis (fatty liver) and worsened liver fibrosis. For a thorough review of liver cancer risk factors,
see the February 2005 HCV Advocate.
HEPATITIS C IN INJECTION DRUG USERS
The April 15 supplemental issue of Clinical Infectious Diseases was devoted to hepatitis C in injection drug users
(IDUs). Noting that "[m]ost HCV infections are due to injection
drug use, and most IDUs have HCV infection," Sulkowski and D.L. Thomas concluded that this population"require[s] considerable, multidimensional support. "Quantifying
the problem, M. Fireman and colleagues found that
93% of nearly 300 patients at a Portland veterans' hepatology
clinic had a current or past history of at least one psychiatric
disorder; the most common were depression (81%), posttraumatic
stress disorder (62%), substance use disorders
(58%), and bipolar disorder (20%). Surveying IDUs in three
U.S. cities, Stephanie Strathdee and colleagues found that
while more than 80% were interested in HCV treatment,
only about one-quarter had seen a health-care provider since
they tested HCV positive.
M. Backmund and colleagues discussed the need for
interdisciplinary collaboration among hepatologists, addiction
specialists, social workers, and psychotherapists. They
found that IDUs receiving drug substitution (e.g., methadone
maintenance) can do as well on hepatitis C therapy as
non-IDUs. Australian researchers found that patients who
continue to inject drugs infrequently can still achieve sustained
response to HCV treatment. However, C.A. Fleming
and colleagues, describing their experience at Boston Medical
Center, characterized their attempts to treat hepatitis C
in a population of HCV/HIV coinfected IDUs as "largely
unsuccessful," due to barriers such as patients' limited ability
to navigate the health-care system and pay for services,
failure to attend scheduled clinic appointments, active psychiatric
conditions, continuing drug or alcohol use, anxiety
about treatment-related side effects, and inability to tolerate
therapy. However, they concluded, "Many of these barriers
to treatment are potentially modifiable, leading to the possibility
that, with appropriate interventions, treatment rates
may be increased."
To this end, Strathdee's team recommended improved
communication between patients and providers, and integration
of hepatitis C and substance abuse treatment programs.
Brian Edlin and colleagues presented an overview
of how successful programs—whether in primary care settings
or correctional facilities—can integrate substance-abuse
treatment, psychiatric care, social support, liver disease
evaluation, and medical management of hepatitis C. Presenting
a successful example of such a strategy, L.E. Taylor reported
that in one such integrated program—in which HCV/
HIV coinfected IDUs were given directly administered
pegylated interferon at weekly clinic visits and a week's
worth of ribavirin in pill boxes—none of the patients had to
stop therapy due to ongoing drug use, addiction relapse, or
For more information on HCV management in IDUs, see
the Hepatitis C Harm Reduction Project's new brochure,"Nine Tips for Treating Hepatitis C in Current and Former
Substance Users," available at www.hepcproject.typepad.com
CALIFORNIA CITIES APPROVE NEEDLE SALES
In the wake of last fall's passage of a new California law
(SB1159) allowing cities and counties to authorize the sale
of up to 10 syringes in pharmacies without a doctor's prescription,
several localities have moved to implement the
legislation. On March 22, the San Francisco Board of
Supervisors voted to allow Walgreens and Rite-Aid pharmacies
to sell non-prescription needles. The Los Angeles
City Council approved non-prescription needle sales on March
9, and the Board of Supervisors of Alameda County (which
includes Oakland and Berkeley) followed suit on March 29.
Sharing needles to inject drugs is one of the most common
routes of hepatitis C, hepatitis B, and HIV transmission. Many
studies have shown that wider availability of clean needles reduces
disease transmission without increasing drug use.
FEDERAL HEPATITIS C LEGISLATION
In March, Senator Kay Bailey Hutchison (R-TX) reintroduced
the Hepatitis C Epidemic Control and Prevention
Act (S-521). The bill, which was originally introduced in
2003 but so far has failed to pass, calls for a comprehensive
federal hepatitis C program which would include counseling
and testing, early detection, epidemiological surveillance,
public education, training of health-care professionals, and
increased research. The program was conceived by the National
Hepatitis C Advocacy Council, a coalition of 20 hepatitis
C organizations including the Hepatitis C Support Project.
The bill is cosponsored by a dozen senators from both major
political parties. Companion legislation, known as HR-1290,
has also been introduced in the House of Representatives.
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Easy C Facts
African Americans & HCV
Hepatitis C affects some groups of people differently than
others. There are differences in the number of people infected
with hepatitis C and how well current HCV medicines
will work in certain groups. This fact sheet is about
African Americans and hepatitis C.
More than twice as many African Americans have been
infected with hepatitis C than whites. That means that out
of the 4 million Americans infected with hepatitis C, 880,000
are African Americans.
African Americans are also more likely to be infected
with a certain strain of hepatitis C called genotype 1. In the
general population with hepatitis only about 7 out of 10
people have genotype 1, but about 9 out of 10 African Americans
are infected with genotype 1—the hardest genotype to
treat with current HCV medicines.
The good news is that many experts believe that hepatitis
C disease may advance more slowly in African Americans
than in whites. The reason for this is not clear and there
needs to be more information to really confirm this fact.
In general, it is more difficult to treat or get rid of HCV
in African Americans than it is for whites with current HCV
medicines, but the types of medicines called pegylated interferon
(once a week injection or shot) when taken with
ribavirin (pill and capsule) are a great improvement over
medicines in the past.
Make sure that you talk with your doctor about ways to
keep yourself healthy and whether you should be treated
with the new medicines.
Some people with hep C say they feel tired a lot. The medical
term for this is fatigue. Hep C can make people feel
tired. But so can a lot of other things. If you have hep C and
are often tired, don’t blame it on the hep C unless you are
sure nothing else is causing your fatigue.
Here are a few things that can cause fatigue:
• Not enough or poor quality sleep
• Certain drugs and alcohol
• Stress and depression
• Other diseases
• Not enough exercise
• A poor diet
• Not drinking enough water and fluids
If you have fatigue, here are some suggestions:
• Talk to your doctor. Make sure you don’t have another
• Avoid or reduce alcohol and non-prescribed drug use.
• Find ways to relax.
• Ask for help.
• Try to rest before you get too tired.
• Spend 5 or 10 minutes in the sun.
• Practice deep breathing for a minute whenever you
• Drink lots of water. A half to a whole gallon a day is
about right for most folks.
• Try to eat the healthiest foods you can. Fruits and nuts
are good choices.
• Try some light exercise every day. Start with 10 to 15
minutes one or two times a day. You don’t even have to
do this all at once. A 5 minute walk is better than no
walk at all.
• Take short naps—no more than 20 minutes and not
close to bedtime.
• Take a shower. Change water temperatures from hot
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