Painting by - Tiffany Sage
The Early Years - Finding HCV Support Online
Good evening folks,
Today we take a look back to around 1997, a time when thousands of people were first being diagnosed with hepatitis C, myself included.
Imagine if you will a large group of people being diagnosed with a disease we knew nothing about. Thank goodness for the Internet, it became our saving grace.
Unfortunately, at the time this blogger knew nothing of the Internet, or computers. Oh sure I read about the Internet, my kids were on the Internet, and eventually taught me everything I needed to know. Until then all I had was a text book and the library.
My early research into the disease, yes I'm calling it research, was found in the back of a Good Housekeeping book, the large leather bound book covered 192 different disorders and diseases. The book I longed for was located at my parents home, in my mothers bookcase, and I hadn't told my family about my diagnosis, I knew I had to get my hands on that book. Like any talented daughter and would-be thief, I slipped the book under my coat during a visit with my parents, while they were both in the other room watching "Touched By An Angel", no less.
Quickly, I was flipping through the book, and there it was, one little paragraph which read - "85 percent of people infected with the virus will develop a chronic infection." Did I have a chronic infection? Information was sparse, anything I did find was lacking in detail. I compiled knowledge in bits and pieces, although, rarely acquired from my own physician.
Eventually, I did find my way to those life saving support forums and joined a mailing list in search of HCV information and support.
I was so relieved, overjoyed when I began to connect with other people living with hepatitis C, I spent everyday on those message boards. Before long we realized that most of us were from the "baby boomer" generation, we had so much in common. We had a voice, we made connections, we all told our stories, on a daily basis we wrote about our fear and desperation.
Crystallized in my mind forever are those early messages written by people who found themselves in a hopeless situation, feeling isolated, it was a time of fear and gloom:
" Please Help me, I just found out I have hep C"
"My doc said not to worry about it, but I am"
"Could my kids have it?"
"Should I tell my family?"
"I was diagnosed years ago with non-A, non-B hepatitis"
"I found out I had hep C after they said I had cirrhosis"
"I was diagnosed after finding out I needed a liver transplant"
"Will I die?"
Another familiar post; "I learned I had HCV through a letter from the Red Cross." Obviously, we came to realize many of us contracted the virus as a result of receiving blood products or a transfusion before 1992. Not until 1990 was a screening test for hepatitis C developed.
During this time approximately 30,000 people received letters from the Red Cross saying that they were infected with the hepatitis C virus, with officials estimating two hundred and fifty thousand people were at risk through earlier blood transfusions in the 1980's.
For some of us, experimental IV drug use was the route of transmission. Unfortunately, because drugs were so prevalent during this era a myth in the public and media was soon born. The misconception? Only people who used IV drugs are infected with the virus. Today this belief plays a part in the number of people forgoing HCV testing.
According to the guidelines from the CDC, baby boomers should be tested once for hepatitis C
One in 30 baby boomers-the generation born from 1945 through 1965- have been infected with hepatitis C, and the larger majority dose not know it.
Other risk factors before 1990 included dialysis patients, recipients of tattoos using unsterile equipment, Vietnam veterans exposed to blood/body fluid, or blood exposure through the multidose vaccination process. In the healthcare field, physicians, lab workers, and nurses were at risk for accidental needle sticks or poor safety conditions. Dr. Douglas Dieterich, a national expert in hepatitis C, contracted the virus in 1977 through an accidental needle stick. In this video the doctor discusses hepatitis C, and the detrimental myth; the disease is only found in IV drug users.
Over the last decade, the transmission of the virus has been reported during medical procedures in hospitals, and standalone clinics. Since 2001, at least 130,000 patients had potential exposure to hepatitis and HIV due to unsafe injection practices in U.S. healthcare settings. The study, published in the May 2012 edition of Medical Care, details 35 separate patient notification events involving at least 17 states between 2001-2011. These events were caused by a variety of unsafe injection practices including: reuse of syringes, mishandling of medication vials and containers, reuse of single-dose vials, reuse of insulin pens, and narcotics theft. The latter was seen in the recent outbreak at Exeter Hospital in New Hampshire, which resulted in 31 people infected with HCV.
In the beginning we didn't know that much about the virus, in fact, in those early days little was done because no effective treatment was available.
From 1991-1997 we only had interferon, then in 1998 the FDA approved the combination of Intron A plus ribavirin (Rebetron). At the end of 1999 I entered into a trial and successfully treated with the newly approved combination, although, I almost missed my opportunity. In the medical community the perception was that the virus wasn't all that serious. The majority of us were diagnosed by our well-meaning general practitioners and told we had nothing to worry about.
As we began to communicate online, we learned HCV was something to worry about. One particular email list, still available today, provided us with important updates and information. Today the HEPC-List is funded and still ran by its founder, Daniel Dimitrios. The list continues to be a great source of support and can be joined by clicking here. Once you register, new posts, along with a Hep C Archive is available for viewing.
Today, two people come to mind that shared information on Daniel's mailing list, Patricia Johnson (aka Peppermint Patti) and David Mazoff, PhD (aka squeeky). If you're an old timer, like me, you may recognize the names also. Patricia Johnson is responsible for the now famous; Peppermint Patti’s FAQs and David Mazoff, PhD an early contributor to the list, is the Webmaster and Managing Editor at HCVAdvocate.
In 2000 HepCBC took over the all-encompassing list of HCV questions and answers. In 2002 a comprehensive website was established by the Canadian non-profit organization. Imagine my delight when HCV information began to truly proliferate. We could now draw upon HCVadvocate , NATAP, HIV and hepatitis, Hepatitis Central, and HepCBC for information.
Peppermint Patti’s list of frequently asked questions offered the newly diagnosed an easy to understand reference, for many, this became the first introduction into what was, or what is - HCV. In 2012 the list was updated and continues to be available at the newly redesigned HepCBC website.
*** LIST UPDATED MARCH 2015
HepCBC presents the March 2015 release of Peppermint Patti's Hepatitis C FAQs - version 10.
The Canadian organization is put together by people living with, or affected by, the virus. In 1996 the organization incorporated in British Columbia, today it continues to be a foundation for support in the HCV community. The site offers close to a decade of information, with basic information on HCV, peer support, publications, news, a monthly newsletter and so much more. The Canadian website and FAQs are a wealth of information still viable today for the newly diagnosed and those families touched by the virus.
History Of Peppermint Patti’s FAQs
PEPPERMINT PATTI’s FAQs come out every year or two. Version 9.0 (2012, English) is 168 pages of answers to the questions most frequently asked (plus many less-frequently asked) about hepatitis C. It contains information about the hepatitis C virus (HCV), its treatment, and related complications. Aimed at patients, caregivers, and others who need very practical hepatitis C information at their fingertips, HepCBC tries to ensure the FAQs are as current, accurate, and accessible as possible. Our FAQs are an informal catalogue of accumulated knowledge by people who, for the most part, are not medical professionals. As the FAQs develop over time, we add further references and citations documenting statements made here.
HISTORY and ACKNOWLEDGEMENTS: Much of the information contained in these FAQs was originally compiled from various personal experiences and opinions on the HEPV-L and HepCAN mailing lists, and from original research published in the hepc.bull. Patricia Johnson (aka Peppermint Patti, the original compiler of the FAQs) asked David Mazoff, PhD (aka squeeky, of the HCV Advocate — www.hcvadvocate.org — in San Francisco) if he could take over the arduous task of revising and updating the FAQs. Dr. Mazoff eventually passed the torch to Joan King of HepCBC. Joan now updates the FAQs in cooperation with Alan Franciscus of the HCV Advocate who provides the hepc.bull and Peppermint Patti’s FAQs with most of the updates about current HCV research.Download Peppermint Patti’s FAQs at HepCBC.
As an early HCV patient, it was difficult living with the stigma. Back then misconceptions about the disease were more common, less so now. I embrace the importance of continuing support found online. The Internet is a tool at our disposal which has offered this support and an abundance of HCV education. On the sidebar of this blog are some links to that information.
Those early HCV websites gave us the knowledge to live with and treat this disease. If not for them, many of us back then would have never embarked on HCV therapy. Even for those who did, success was just out of their reach. We fondly remember our friends who passed away from hepatitis C, your battle was unrelenting, fought with such dignity and strength.
For the thousands of people who were participants in clinical trials, then and now, I offer you my sincere gratitude. Rather you have come to realize it or not, you all played a part in curing thousands of men, women and children.
Always
Tina AKA Myer
In 2002 I established my first website in memory of my friend Janis Morrow, who passed away from hepatitis C on July 23 2001. The website dedicated in her name was "Janis and Friends Hepatitis C Website", in 2010 her site evolved into Hepatitis C New Drug Research And Liver Health.
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