The Hepatitis C Association had a wonderful 2007. Our work with
SAMHSA has continued and grown. The hepatitis educational program
for clinicians who work with substance abuse patients, under the
guidance of the American Association for the Treatment of Opioid
Dependence, reached 1134 OTP staff in 51 cities in 10 states. This
was a 38% increase over what was done in 2006. The Office of
Minority Health Resource Center (OMHRC) asked for more information
on hepatitis C virus and has been given permission to distribute our
curriculum at OMHRC attended conferences throughout the nation. They
are also posting our schedule of trainings on their website. The
hope is that they will receive permission to make available a
Spanish language version of the program.
We completed our hepatitis C patient program that was funded by
Roche Pharmaceuticals and we hope to continue with that in 2008. The
plan is to coordinate the presentations for patients in the same
time frame that we visit the clinicians to make the best use of
funds and our time. We have spoken with and educated over 500
patients in the three years that the program has existed. It is very
well received both by patients and their counselors.
A special thank you goes to our presenters, Randy Huard and Betsy
Diver of Minnesota, Rick Wallace of Florida, Michael Ninburg of
Washington, Bruce Burkett of Missouri and Patty Gilbertson of
Virginia. These trainers do an exceptional job and we thank them for
their expertise and professionalism.
We continue to strive to educate ourselves so that we may offer the
latest information about hepatitis C to patients and providers. I
serve as Secretary for the National Hepatitis C Advocacy Council. I
am on the advisory board of Methadone Support Organization and AFIRM.
I also sit on the hepatitis advisory board of the New Jersey State
Department of Health. Denny is a member of the Board of Directors of
the National Viral Hepatitis Roundtable. As advocates and educators
we attend as many conferences as time allows and we enjoy partnering
with other fine organizations who work in the field of hepatitis
and/or substance abuse. Our latest endeavor is to co-author a
chapter for the new Treatment Improvement Protocol focusing on
hepatitis in the substance abuse community.
There has been much good news for patients in the last year.
Physicians and researchers are now using the word "cure" when it
comes to patients who have achieved a sustained viral response.
Newer drugs are entering Phase 3 trials and more patients can look
forward to being cured. However, the work is not all done. We need
better and more effective drugs for people who cannot achieve SVR
with the protease inhibitors coupled with Pegylated Interferon and
Ribavirin. We need more awareness so that people who are infected
but unaware will know to get tested and treated if needed and we
need to continue to work on the stigma that comes with hepatitis C.
No one is immune to this disease.
All the Joy
In 1991, at the age of 47, I was diagnosed with a chronic,
progressive disease. As one who has always feared doctors, it was my
worst nightmare come true. I had hepatitis C virus (HCV). Because
this disease was first identified in 1989, the doctors didn't know
too much about it. After my first liver biopsy, which showed
cirrhosis, I started treatment. The medications didn't work. I asked
my physician what was going to happen to me. He answered, "This is
too new to tell. I just don't know." Can you imagine how terrifying
it is to hear an answer like that? Aren't we all used to going to
the doctor, getting a prescription and getting better?
The next couple of years were absolutely torturous. I didn't sleep
well, I lost 30 pounds, I developed panic attacks. I was sure that I
would not see my daughters married or ever get to meet any
grandchildren who may come later. On a daily basis, my poor husband
dealt with a wife who was moody, depressed, terrified, and didn't
even have the energy to cook a meal. All the joy was gone. The only
thing I was able to do was go to work. As a school teacher, I credit
those little first graders with helping me get through the scariest
time of my life.
In 1995 my husband, Dennis, bought me a computer for Mother's Day.
It opened up a whole new world for me. I was able to read about
hepatitis C virus and actually meet people on-line who had the
disease. Up until then I didn't know anyone who was personally
affected with HCV.
When I began a second round of treatment, I was forced to take a
disability leave of absence from work. It would not be fair to a
group of six year olds to have a teacher who, during one year of
therapy, had fatigue, headaches and "brainfog". I planned on
returning after treatment was over. However, sometimes, when you're
not expecting it, life sends you in another direction. While on
leave, I spent many hours on the computer. There are newsgroups,
email lists and on-line support groups for almost anything you can
imagine. I discovered that in trying to help others, I became
stronger. It wasn't so frightening anymore. I truly believe that
reaching out a hand and lending a sympathetic ear benefits both the
giver and the receiver. There is no better feeling than listening to
a newly diagnosed, very frightened patient, and then hearing the
relief in their voice when I am able to tell them that my biopsy
showed cirrhosis and I am still busy doing my life many years later.
Most HCV patients are diagnosed years before they are at risk for
developing severe liver damage. My life story has given many others
a reason for hope, and has taken away their terror.
One of the people I helped early on is a woman I met first on the
internet. She too had been diagnosed with cirrhosis and when I met
her she said she was starting to "put her affairs in order." She did
not expect to live very long. I found that it was a comfort to her
to know that I had the same diagnosis and I was still "alive and
kicking" six years after diagnosis. I had also experienced treatment
and was able to give her some tips on how to help with side effects.
We became fast friends. Together we worked in the hepatitis C
community and hopefully made a difference in the lives of other
Hepatitis C is an epidemic world-wide. There are an estimated 4
million people in the United States, and 200 million in the world,
who are harboring this silent disease, the majority of whom are
unaware that they carry this virus. It is usually an asymptomatic
disease until the later stages.
Today, as I go forward with the Hepatitis C Association, Inc., we
try to educate our communities so that people are aware of the risk
factors, understand how the disease is transmitted, learn how to
better care for themselves if infected and hopefully stay off the
transplant list. We encourage people to become organ donors.
Hepatitis C virus is the number one reason for liver transplantation
in our country. One of the things I am most excited about is the
creation of an educational program for use in substance abuse
clinics, counseling centers, departments of health and everywhere
there is a need for education.
If you have any of the following risk factors, please ask your
physician to test you.
1. Had a blood transfusion before 1992
2. Ever used injectable drugs or snorted cocaine
3. Ever on hemodialysis
4. Received clotting factors before 1987
5. If you are a Viet Nam Era Veteran
6. If you are a Healthcare worker who experienced a needlestick
7. If you ever had promiscuous unprotected sex
As odd as this may sound, having hepatitis C is not all bad. By
talking about this disease, I have become a better listener. By
holding out my hand to those who need it, I have learned that all
people deserve a chance for a better life. By pushing myself to my
limits physically, I have learned that I can overcome just about
anything. Through helping others, I have rediscovered the joy in my