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HCV Advocacy and Activism—More
for 2004
Liz Highleyman
Chronic hepatitis C (HCV) has received
much attention in recent years, as experts and the general
public alike have become more aware of the extent of the epidemic.
Expect more of the same in 2004, as well as an increased focus
on hepatitis B (HBV) and HCV/HIV and HBV/HIV coinfection.
AASLD Conference Highlights: Part 3
Alan Franciscus, Editor-in-Chief
ASSLD Conference highlights part
3 will focus on an important study on sexual transmission
as well as on current pegylated interferon therapies for the
treatment of hepatitis C.
HealthWise: Food for Thought
Lucinda K. Porter, RN, CCRC
The holidays have passed and the
next event that involves chocolate is not until Valentine’s
Day. Food is an essential part of life. Unfortunately, too
much food or an excess of “empty calories” may
have a negative impact on life expectancy and quality of life.
Ten Ways You Can Help
Alan Franciscus, Editor-in-Chief
2003 was a watershed year for
hepatitis C advocacy and activism. We are now on the brink
of some major positive changes that will have a direct impact
on each and every one of us. It
is of the utmost importance that we all pull together and
work hard to make these positive changes a reality.
Writing Tips: Letters of Support
Alan Franciscus, Editor-in-Chief
Every letter received by your
senator and representative is very important to them. Writing
your senator or representative is another example of democracy
at work, allowing us all to have a voice in how our country
is run. You may not think that just one letter can make a
difference, but even one letter could be the ‘one’
that sways an opinion or vote.
Hepatitis C: Worldwide
Alan Franciscus, Editor-in-Chief
The World Health
Organization estimates that 170 million people worldwide have
been exposed to hepatitis C, which represents approximately
3% of the world’s population.
Stay informed on the latest news
..click here to register for email alerts
HCV
Advocacy and Activism—More for 2004
Liz Highleyman
Chronic hepatitis C (HCV) has received much attention in recent
years, as experts and the general public alike have become
more aware of the extent of the epidemic. Expect more of the
same in 2004, as well as an increased focus on hepatitis B
(HBV) and HCV/HIV and HBV/HIV coinfection.
While no new drugs for hepatitis C are expected to hit the
shelves, some innovative treatments are on the horizon, including
HCV polymerase and protease inhibitors. A few to keep an eye
on: Boehringer Ingelheim’s BILN 2061, Schering’s
SCH-6, and Vertex’s VX-950. At least a couple of new
drugs should move out of the laboratory and into human trials.
Additional study results will also become available for existing
treatments. Look for data on longer-term sustained response
rates to pegylated interferon plus ribavirin, and more on
treatment of non-responders, relapsers, and patients with
cirrhosis. As more people use pegylated interferon / ribavirin
outside clinical trials, we’ll get a better idea of
how the drug works in “real world” settings. And,
toward the latter part of the year, we may start to see preliminary
results from the IDEAL trial comparing Pegasys and Peg-Intron.
In terms of HBV, expect more news about telbivudine (LdT)
and emtricitabine (FTC, Emtriva, approved in July 2003 for
HIV treatment), both of which have shown promising results
in clinical trials so far.
Another trend that will continue into the new year is the
recent upsurge in activism around HCV. As was the case with
HIV/AIDS in the 1980s, people with HCV and their advocates
are demanding more awareness and prevention education, stepped
up funding, increased research, and better access to treatment.
In a recent example of such grassroots mobilization, last
month high-school students from Fairfax, Virginia, launched
a hepatitis C campaign in Washington, DC. On December 4, 2003,
more than 100 members of DECA, an association of marketing
students, rallied on the steps of the Capitol building to
raise awareness about the disease. The DECA students plan
to lobby their local school board for hepatitis C education
and survey local businesses to determine if HCV safety measures
are being practiced for manicures, tattooing, and body piercing.
The campaign was inspired by one of the students whose father
has HCV.
Among the DECA students’ main goals was supporting the
Hepatitis C Epidemic Control and Prevention Act
(HR 3539/S 1143).
This legislation, introduced in May 2003 by Senators Kay Bailey
Hutchison (R-TX) and Edward Kennedy (D-MA), would require
the federal government to develop a comprehensive national
treatment and prevention plan for hepatitis C—the first
federal response to the epidemic. The legislation would create
HCV public awareness campaigns; implement screening, counseling,
and surveillance programs; and fund professional training
and HCV research. The bill is supported by the National Hepatitis
C Advocacy Council, a new coalition comprising nearly two
dozen organizations—including the Hepatitis C Support
Project—spearheading the same kind of advocacy around
HCV that successfully garnered more attention and funding
for HIV/AIDS. The bill is currently pending in a congressional
committee. Advocates are expected to renew their push to get
the legislation passed when Congress reconvenes for the new
year.
In addition to students, veterans and prisoners are also calling
for more awareness of and better treatment for HCV. Last September,
for example, veterans, active military members, and their
dependents demonstrated at the Department of Veterans Affairs
(VA) headquarters in Washington, DC, during the VA’s
annual National HCV Community Advisory Board meeting. The
veterans are promoting another bill introduced in 2003, the
Comprehensive Hepatitis C Health Care Act for Veterans (HR
73), which will help HCV positive veterans get better testing
and care from the VA. A companion bill was introduced in the
Senate by Jon Corzine (D-NJ) this past November.
A conference on the Management of Hepatitis C in Prisons held
in San Antonio, Texas, in January 2003, and a report on HCV
in prison released by the Centers for Disease Control and
Prevention (CDC) the same month, have spurred activism by
prisoners and their advocates. Class action lawsuits are pending
in Oregon and Michigan—along with individual legal actions
in several other states—demanding better access to testing
and treatment in accordance with the CDC’s new guidelines.
With the increased attention to chronic hepatitis, the National
Institutes of Health (NIH) this past summer created a Liver
Disease Research Branch (LDRB) within the National Institute
of Diabetes and Digestive and Kidney Diseases (NIDDK). The
new branch will be headed by Dr. Jay Hoofnagle, a well known
hepatitis expert who pioneered the use of interferon for HBV
and HCV. The LDRB will help coordinate liver-related research
conducted by the NIH and other federal agencies such as the
CDC, the VA, and the Bureau of Prisons. As part of its mission,
the branch will direct epidemiological studies and clinical
trials, identify gaps in research, and set research and funding
priorities. As one of its first efforts, the LDRB is preparing
an Action Plan for Liver Disease Research. The plan will provide
an overview of the current burden of liver disease in the
U.S., the status of current research funding, challenges to
advancing liver disease research, and major future research
needs—and will prepare a tactical plan for meeting these
needs.
The LDRB’s action plan will be released in 2004 and—along
with pending legislation—will hopefully help turn the
increased HCV advocacy of recent years into concrete results.
Back to top
AASLD
Conference Highlights: Part 3
Alan Franciscus, Editor-in-Chief
ASSLD Conference highlights part
3 will focus on an important study on sexual transmission
as well as on current pegylated interferon therapies for the
treatment of hepatitis C.
Sexual Transmission
Sexual transmission of hepatitis C is highly controversial
due to prior study limitations, such as small sample size,
exclusion of non-sexual routes (injection drug use) and failure
to test for different serotypes (viral strain) of hepatitis
C among the couples.
Norah Terrault and colleagues presented data on sexual transmission
of hepatitis C in heterosexual monogamous couples from the
HCV Partners Study.
This study included only monogamous heterosexual partners
who were in a relationship for at least 3 years and reported
no history of injection drug use. People with HIV and/or HBV
infections were excluded. Partners were tested for antibody
using EIA-2, RIBA-3, HCV RNA and HCV genotype/serotype. Partners
with concordant serotype underwent phylogenetic analysis (pending).
Detailed information on HCV risk factors and sexual practices
were obtained by interviewing the partners separately.
Of the 2077 couples screened, 672 were eligible, 552 enrolled
and 500 completed the study. The most common reasons for study
ineligibility were lack of sexual partner (40%), prior organ
transplant (15%), HIV or HBV coinfection (10%), partnership
<3 years or non-monogamous (8%), and IDU in both partners
(8%).
The median age of partners was 49 years old (range 27-79)
and 75% were Caucasian.
The median duration of sexual contact was 16 yrs (range 3-52);
the median number of sexual contacts per month per couple
ranged from 0.3 to 24.4. The proportions of couples engaging
in vaginal, anal, oral active and oral receptive sex were
98.3%, 12.5%, 77%, and 76%, respectively. Use of condoms was
reported by 80%, but only 17% reported frequent or regular
condom use.
A total of 20 (4%) partners tested positive for anti-HCV (EIA
and RIBA) and 12 had detectable HCV RNA (viral load). The
type and frequency of sexual contacts and frequency of sharing
personal items (e.g., razors) did not differ between anti-HCV
positive and negative partners (all p>0.05).
Anti-HCV positive partners had higher rates of IDU (45% versus
1%, P<0.001), tattoos (45% versus 15%, P=0.007), blood
brother rituals (37% versus 12%, p= 0.0015), bloody needlestick
injury (60% versus 14% (p=0.005), and total number of sex
partners (p=0.005).
In multivariate analysis, only IDU, tattoos and needlestick
injury were independently associated with anti-HCV positivity
in the partners. Genotypes/serotypes were discordant in 6
couples and concordant in 9 couples tested to date. Sexual
contact rates of type concordant couples tended to be higher
than type discordant couples (median 1 vs 0.25 contact per
months, p=0.07) but with no differences in types of sexual
practices. The frequency of percutaneous risk factors for
HCV in both partners tended to be higher in discordant than
concordant couples (3/5 versus 1/9, p=0.09).
The authors concluded that the prevalence of anti-HCV among
sexual partners of persons with HCV was 4% (95% CI: 2.3%-5.7%)
but 40% of partners had discordant types indicating lack of
sexual transmission which would mean that the sexual transmission
rate would be 2.2%. The majority of type concordant couples
lacked percutaneous risk factors for HCV, suggesting sex may
be the route of transmission but phylogenetic analysis of
viral strains will ultimately determine whether sexual transmission
occurred.
Dr. Terrault commented that duration of exposure or condom
use did not affect the rate of transmission. The next questions
that need to be answered in this study are what types of sexual
contact are more likely to transmit HCV and whether male or
females are more susceptible to HCV transmission.
African Americans
There is growing evidence that response rates to interferon
therapy appear to be lower in African American patients with
chronic hepatitis C than in Caucasians. However, African Americans
are under represented in HCV clinical trials and the majority
of trials to date have been retrospective trials (looking
back at completed trials) rather than prospective trials (carefully
planned and conducted with treatment protocols) which are
needed to form concrete conclusions.
Lennox J. Jeffers and colleagues presented data from a prospective
clinical trial to determine the efficacy and safety of peginterferon
alfa-2a (Pegasys) in combination with ribavirin (Copegus)
in non-Hispanic African Americans patients infected with genotype
1 hepatitis C.
The trial enrolled patients in a 3:1 ratio of African Americans
to Caucasian patients and was designed to estimate sustained
virologic response rates in the African American group to
within ± 10% of a 95% confidence interval.
One hundred and six previously untreated genotype 1 patients
with elevated ALT levels were treated with Pegasys 180 µg
sc once weekly plus Copegus 1000 or 1200 mg for 48 weeks,
with a 24 week follow-up period. Sustained virological response
was defined as undetectable HCV RNA (viral load) at week 72.
Histologic responses were reported as Knodell HAI scores of
liver biopsies obtained prior to treatment and within 4 weeks
of completion of the 24-week untreated follow-up period.
The baseline characteristics of the African American patients
were: mean age 46 years, 56 male (72%), mean ALT 63 U/L, high
viral load (58%).
Baseline characteristics of Caucasian patients were: mean
age 45 years, 17 male (61%), mean ALT 64 U/L, high viral load
(43%).
Sixty-two of 78 (80%) African American patients and 22 of
28 (79%) Caucasian patients completed treatment; and 60/78
(77%) African American patients and 17/28 (61%) Caucasian
patients returned at week 72. African Americans with a high
viral load achieved a 20% sustained virological response rate
compared with Caucasians who achieved a 25% sustained virological
response rate.
The authors concluded that the sustained virological response
rate in African Americans with genotype 1 is the highest response
to combination therapy reported to date in this population.
The authors also noted that the difference in the sustained
virological response rates of African Americans versus Caucasians
might be explained by the high viral load seen in African
American patients and that this study would provide a basis
for future efforts to increase the effectiveness of HCV treatment
results in African Americans.
William Cassidy and colleagues reported data on a trial that
looked at the effect of HCV therapy on hepatic histology (liver
health) of non-Hispanic African Americans compared to non-Hispanic
Caucasians treated with pegylated interferon alfa-2a (Pegasys)
plus ribavirin (Copegus).
All Patients received Pegasys 180 µg once weekly plus
Copegus 1000 or 1200 mg for 48 weeks, with a 24 week follow-up
period. Histologic responses based on the Knodell HAI score
were determined from liver biopsies obtained prior to treatment
and within 4 weeks of completion of the 24-week follow-up
period. HAI activity scores range from 0-18 and fibrosis scores
range from 0-4. The histology outcome was evaluated for patients
with paired biopsies only. Improvement in necroinflammatory
activity was defined as >2 point decrease, and improvement
in fibrosis as >1 point decrease. The primary efficacy
endpoint was sustained virologic response (SVR) with undetectable
HCV RNA (<50 IU/mL) at 72 weeks.
The intent-to-treat population included 106 patients. Paired
biopsies were available for 53 of the 78 African American
patients and 16 of the 28 Caucasian patients. These patients
were representative of all patients with respect to Knodell
HAI scores.
Mean baseline HAI activity scores were 7.2 ± 0.32 for
African Americans and 6.9 ± 0.69 for Caucasian patients;
mean baseline fibrosis scores were 1.8 + 0.14 and 1.9 + 0.3,
respectively.
The sustained virological response rate for all African American
patients was 20/78 (26%) and for all Caucasian patients was
11/28 (39%).
The majority of patients in both groups exhibited improvement
in activity scores: 64% for the African American group and
69% for the Caucasian group. More importantly, the proportion
of patients with worsening fibrosis was similar in both groups,
while 13/53 (25%) African American patients and only 1/ 16
(6%) Caucasian patients showed fibrosis improvement. Mean
changes in fibrosis scores were -0.4 ± 0.14 for African
Americans and -0.1 ± 0.14 for Caucasian patients.
The authors concluded that therapy with Pegasys and Copegus
improved necroinflammation and fibrosis in a substantial number
of African American patients in this study. Even those patients
without a sustained virological response showed an improvement
in hepatic histology.
Genotypes 2 & 3
Pegylated interferon alfa-2b (PEG-Intron) plus ribavirin (Rebetol)
is currently FDA approved for treatment of genotype 2 and
3 patients for 48 weeks. A study by Zeuzem and colleagues
compared the safety and efficacy of PEG-Intron plus Rebetol
for genotype 2 and 3 treated for 24 weeks to the historical
Manns clinical trial that treated all genotypes for 48 weeks.
Two hundred-twenty-four treatment-naive chronic HCV patients
infected with genotype 2 or 3 received PEG-Intron 1.5 microgram/kg
subcutaneously once weekly plus Rebetol 800-1400 mg/day based
on body weight for 24 weeks.
Plasma HCV RNA was determined using quantitative PCR (Taq-Man,
sensitivity 29 IU/ml). Genotype was determined by sequencing
the PCR product.
The sustained virological response rate was 81% which is similar
to the sustained virological response rate seen in the historical
group treated for 48 weeks. As expected, the overall drop-out
rates and dose reductions were lower in the 24 week group
compared with the 48 week group.
The authors concluded that 24 weeks of PEG-Intron plus Rebetol
therapy for genotype 2 and 3 were similar in efficacy to the
48 week group in the historical study.
Acute Infection
Treatment of acute hepatitis C infection remains controversial.
However, the few studies that have been conducted to date
have shown a high efficacy rate using interferon monotherapy.
In a study conducted by Johannes Wiegand and collegues (HEP-NET
Acute HCV Study Group) the use of pegylated interferon alfa-2b
(PEG-Intron) for the treatment of acute hepatitis C was examined.
In this study, 60 patients with symptomatic acute hepatitis
C were recruited between February 2001 and May 2003 from 40
different sites in Germany. The peak ALT levels were at least
ten times the upper limit in 51 patients (85%). The patient
characteristics were 22 females/38 males, mean age 38 years
old, Genotype 1 – 55%, Genotype 2 – 3%, Genotype
3 – 17%, and Genotype 4 – 2%. Genotype was not
available in 23%. HCV RNA (viral load) was quantified before,
during and after treatment.
Patients were treated with 1.5 mcg/kg pegylated interferon
alfa-2b (PEG-Intron) for 24 weeks.
The interim results showed that a high percentage of patients
with symptomatic acute hepatitis C achieved high response
rates. However, there was a relatively high number of patient
drop-out rates—underlining the importance of patient
management, support, and adherence to therapy. Final results
of this trial are eagerly awaited.
Genotype 4
Hepatitis C genotype 4 infection is uncommon in the United
States. However, in other parts of the world such as the Eastern
Mediterranean, genotype 4 is the predominant strain of hepatitis
C. Clinical trials on the effectiveness of interferon therapy
in this patient population have been limited.
O. A. Shobokshi and colleagues conducted a study in genotype
4 patients in Saudi Arabia to compare the safety and effectiveness
of peginterferon alfa-2a (Pegasys) plus ribavirin (Copegus)
with Pegasys monotherapy and interferon alfa 2b (Roferon)
plus Copegus combination therapy.
This was an open label multicenter clinical trial in which
180 patients infected with chronic hepatitis C genotype 4
were treated for 48 weeks with a follow up period of 24 weeks.
The patients were randomized into the following treatment
groups:
•Group A: Pegasys -180µg once
weekly plus Copegus (400mg) twice daily
•Group B: Pegasys 180µg once weekly
•Group C: Roferon A 4.5 million units
three times a week plus Copegus (400mg) twice a day.
The sustained virological response rates (week 72) were 50%
(group A), 28% (group B) and 30% (group C). Among week 12
early responders the sustained virological responses were
65.2% and 47.2% in the two pegylated interferon groups. The
negative predictive value observed among non-responders in
all groups at week 12 was 100%.
Twelve patients (6.7%) dropped out of the study: group A,
7 patients (11.7%), Group B, 4 patients (6.7%) and group C,
1 (1.7%).
The authors of this study concluded that pegylated interferon
alfa-2a plus ribavirin is safe and effective in this patient
population and, despite the use of a low dose ribavirin of
400mg twice a day, an enhanced sustained virological response
rate of 50% (65% in early responders) was reported for the
combination of peginterferon alfa-2a plus ribavirin.
Gamal H. Esmat and colleagues conducted a study on 200 patients
(90% - genotype 4) in Egypt to assess the effectiveness of
interferon alfa-2b (Intron A - 2 million units three times
a week) and pegylated interferon alfa 2b (PEG-Intron-100 mcg/week)
plus ribavirin (Rebetol – 800-1000 mg for both groups).
This was a prospective, open-label, randomized trial. If HCV
RNA viral load was detectable at week 24, treatment was discontinued,
but if HCV RNA was undetectable at week 24 treatment was extended
to 48 weeks with a follow up period of 24 weeks.
The sustained virological response rate (intent to treat analysis)
was 55% in the PEG-Intron group compared to 40% in the Intron
A group. Six patients dropped out of the study in the Intron
A group and 11 patients in the Peg-Intron group.
The authors concluded that patients treated with PEG-Intron
plus Rebetol achieved similar sustained response rates as
those with genotype 1.
This concludes our coverage of AASLD 2003—visit our
web site for additional coverage. Part
1, Part 2, AASLD
Abstracts
Back to top
HealthWise:
Food for Thought
Lucinda K. Porter, RN, CCRC
The holidays have passed and the next
event that involves chocolate is not until Valentine’s
Day. Food is an essential part of life. Unfortunately, too
much food or an excess of “empty calories” may
have a negative impact on life expectancy and quality of life.
The prevalence of overweight and obese Americans is on the
rise. The Surgeon General estimates that 300,000 obesity-related
deaths occur annually in the United States. Obesity is associated
with an increased risk in a number of medical conditions including
heart disease, stroke, high blood pressure, and type 2 diabetes.
People living with chronic hepatitis C virus (HCV) infection
may have additional reasons to be concerned about body weight.
Obesity may be a negative-predictor for response to currently
available HCV therapy. Obesity is a risk factor for cirrhosis-related
death and may increase the risk for fibrosis.
The generally acceptable definitions of overweight and obesity
are based on the Body Mass Index (BMI). BMI is a measurement
based on the ratio of weight-to-height. Individuals with a
BMI of 25 to 29.9 are considered overweight, while individuals
with a BMI of 30 or more are considered obese. You can calculate
your BMI by dividing your weight in kilograms by the square
of your height in meters. The mathematical formula for BMI
is: BMI = Kg / (m)2. For those who prefer not to do the math,
BMI calculators are available on the Internet.
Losing weight is a simple concept. The goal is to use more
calories than you take in. This usually involves diet and
exercise. However, simple does not mean easy. Opinions about
various diets can be confusing. Exercise can be a huge challenge
to those with physical limitations. The topic of exercise
will be discussed in a future article. The rest of this article
will focus on the topic of diet.
Weight loss is the subject of much debate. Between Atkins,
L.A., South Beach, Weight Watchers, and the Zone diets, which
diet is the best? First and foremost, talk to your primary
care practitioner. It is important to choose a weight loss
strategy that is healthy and fits your current medical condition.
Second, choose a diet that you can live with and maintain.
Look for a diet that has a record of long-term success. At
best, deprivation can be maintained for the short term and
can sabotage the best intentions. Choosing a diet is like
shopping for clothes, you have to find something that fits
and that you like. Find a diet that works with your food preferences
and lifestyle. Third, identify resources. Consider if you
want to work with a group, a nutritionist, a book, an on-line
program, or a magazine. Dieting is a booming industry and
there are many choices. Public and private agencies, such
as insurance companies, sometimes offer assistance with weight
loss. There are free resources available on the Internet and
at the library. Magazines such as Health and Prevention usually
have monthly weight loss articles as well as recipes.
Next, set a goal. Make the goal measurable and achievable.
An example of this is to avoid eating desserts five out of
seven days for a week. Trying to give up desserts forever
is unrealistic. Finally, formulate a plan. “Failing
to plan is a plan to fail,” notes Pamela Peeke, MD,
Assistant Clinical Professor of Medicine at the University
of Maryland School of Medicine. Losing weight takes thought
and commitment. Some find it easier to maintain the commitment
if there is a plan in place. Hunger and temptation are harder
to resist when there is no plan in place.
Losing weight and maintaining weight loss can be a slow process.
It involves trial and error, commitment, and knowledge. Successful
weight loss requires a willingness to explore many avenues.
Thomas Edison said, “The three things that are most
essential to achievement are common sense, hard work and stick-to-it-iv-ness.
Unfortunately, many of life’s failures are experienced
by people who did not realize how close they were to success
when they gave up. If I find 10,000 ways something won’t
work, I haven’t failed.” Most of us do not achieve
instant success with our first attempt to lose weight. Even
if it takes 10,000 attempts, it is worth the effort.
Copyright, January 2004 Lucinda Porter,
RN, and the Hepatitis C Support Project / HCV Advocate –
All Rights Reserved.
Reprint is granted and encouraged with credit to the author
and the Hepatitis C Support Project.
Back to top
Ten Ways You Can
Help
Alan Franciscus, Editor-in-Chief
2003 was a watershed year for hepatitis
C advocacy and activism. We are now on the brink of some major
positive changes that will have a direct impact on each and
every one of us. At the national level, the introduction of
The Hepatitis C Epidemic Control and Prevention Act
is moving its way through congress with an excellent chance
that it will become law. However, we must all continue to
do our part to support and make this law a reality. In addition,
there is much movement at the local and state levels for providing
testing, support and other services for the hepatitis C community.
It is of the utmost importance that we all pull together and
work hard to make these positive changes a reality. In addition
to supporting the national bill, there are many other areas
that can be directly supported regardless of how much time
or energy you may have at your disposal.
Below is a list of ideas to help you in your advocacy efforts.
The list below is by no means exhaustive. Please let us know
about any ideas that have worked for you and we will share
them with our readers.
Please consider some of the following
ideas:
1. Support the Hepatitis
C Epidemic Control and Prevention Act. Some tips
for writing an advocacy letter are included in this issue
(see below).
2. Support local and state initiatives —check
in with your representatives about pending legislation.
3. Educate individuals and the public about hepatitis
C—we have seen remarkable strides in awareness from
HCSP certified trainers who have taken their outreach efforts
to new heights. They have made presentations, worked with
local agencies and their clients to improve support and services.
4. Start a support group or help an existing support
group leader in their efforts.
5. Help others with hepatitis C—this can be one
of the most powerful acts of selflessness.
6. Get involved in your community—check-in with
your local health department or other agencies affected by
hepatitis C. Contact your CDC Hepatitis Coordinator.
7. Direct action—public demonstrations can have
a huge impact on public education and awareness.
8. Enlist the help of the media—develop a press
kit on hepatitis C that you can send to various news services
in your area.
9. Distribute educational materials to local agencies
and individuals. Make a commitment to keep them stocked with
materials.
10. Start or work with a local Hep C task force.
Back to top
Writing Tips:
Letters of Support
Alan Franciscus, Editor-in-Chief
Every letter received by your senator and representative is
very important to them. Writing your senator or representative
is another example of democracy at work, allowing us all to
have a voice in how our country is run. You may not think
that just one letter can make a difference, but even one letter
could be the ‘one’ that sways an opinion or vote.
Some representatives lose touch with the issues—a letter
from a constituent will inform them of the political climate
back home. They may realize that by not supporting one bill
they may lose many votes.
Writing a letter of support is relatively simple. It is important
to remember that legislative assistants receive thousands
of letters and only have a fraction of time to read them,
so it is very important that the letter is clear, concise
and to the point.
1. Read the entire piece of legislation—pick
out parts of the bill that you believe are important for later
reference.
2. Before you compose the letter ask and
answer some simple questions:
*Why am I writing this letter?
*What is the goal of this letter?
*How does this legislation affect me?
3. Compose a first draft—make it
clear and easy to understand.
*Begin with how HCV has affected you:
*Use your own voice: Example: “As a person
living with hepatitis C”, “As an African American
living with hepatitis C”, “As a parent of someone
living with hepatitis C”, “As a friend of someone
with hepatitis C.” It should be passionate but the introduction
should not ramble or become a ‘pity party.’
*Introduce the legislation—This can also be the
first line of your letter. Example: “Please
vote YES on H.R. 3539, the Hepatitis C Epidemic Control
and Prevention Act…” Example:
“…….I would like to encourage you to support
H.R. 3539, the Hepatitis C Epidemic Control and Prevention
Act……”
*Discuss the importance of the bill and how it can affect
needed change. Example: “Hepatitis C is the most common
blood-borne infection in the United States. Approximately
4 million Americans have been exposed to hepatitis C. This
bill will help to address the hepatitis C epidemic …..”
Example: “It is estimated that approximately
4 million Americans have been exposed to hepatitis C yet only
about 20% of those infected know they have hepatitis C. This
bill will help to heighten awareness and provide services
enabling people to seek care, which will save lives and reduce
future medical costs.”
*Restate your objective: Example: Please vote
YES on H.R. 3539, the Hepatitis C Epidemic Control
and Prevention Act. If you would like to discuss
this issue with me, please call me at …”
*Use only approved statistics and facts that have been
issued by governmental sources.
*Once a draft is written walk away from the letter—come
back to it with a clear mind.
*Let the second draft sit (overnight if necessary) and
proof it the next day.
*Use spell and grammar check!
*Ask a member of the family, friend or business acquaintance
to review the letter for content, grammar and punctuation.
*Don’t be afraid to rewrite or edit as necessary.
4. Handwritten or typed letters carry the
most weight. Mail a hard copy of the letter to your representative
and send a copy via email and fax.
5. Make a follow-up call to your
representative and encourage her or him to support the bill.
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Hepatitis
C: Worldwide
Alan Franciscus, Editor-in-Chief
The World Health Organization estimates
that 170 million people worldwide have been exposed to hepatitis
C, which represents approximately 3% of the world’s
population. Although it is difficult to accurately measure
the rate of HCV infections in countries that do not routinely
test, the currently available data appears to substantiate
these numbers. Hepatitis C prevalence rates vary considerably
from country to country but, as expected, lower prevalence
rates are generally seen in developed countries and higher
rates are seen in underdeveloped countries.
High:
•Egypt where an estimated 18% of population is
infected with hepatitis C due to re-use of needles to treated
schistosomiasis.
•Rwanda; Cameroon; Mongolia
Moderate:
•Japan; Italy; Romania; Brazil; United States
Low:
•Scandinavia; Spain; Australia; Canada; England
The modes of transmission are varied
but the most common routes include the re-use of needles for
medical procedures, medical procedures involving blood products,
illegal injection drug use and blood ritual practices.
In the coming months, we will be reporting on the impact of
hepatitis C in various countries around the world. We welcome
any information that people in other countries would like
to share with our staff.
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