Wednesday, November 30, 2011

In The Spotlight-HCV Advocate and Ms. Lucinda K. Porter, RN.

Hey folks, it snowed in Michigan! Yep, I woke up to about an inch of snow, it feels like Christmas around here.

Ask yourself this, what was the best Christmas gift you ever received? Wait, let me go first.

In the year 2000 on December 22nd, the Friday before Christmas while anxiously sitting across from my physician, looking very lovely with my new post-treatment face, he announced the results of my six month post PCR. You know, the PCR which will tell me if I'm cured, or not.

My Christmas Present

With a gleam in his eye * almost like Santa, he began "You're going to have one great Christmas, congratulations, you're undetectable.


It took a few moments to sink in, could this be real?

That day I drove home with the Rolling Stones - I was "Dancing in the Street".

With this good news, my children felt assured they wouldn't lose another parent to HCV. I would be around to watch them grow, as a family we celebrated, what a Christmas we had that year.

In The Beginning There Was Little Hope

For the seasoned HCV patient, I'm talking about the tens of thousands of people who were first diagnosed around 1998 or so, when this all began for me, a time when it was rare to hear these life saving words: undetectable, cured, SVR. Heck, most us had no idea what this disease was about, we were pretty much on our own, with insufficient resources to satisfy our needs, in other words the information was almost null.

However, we did have our support forum, message board or email list where we bonded with the many brave people who will forever remain in our hearts. We lost far too many people back then to HCV, it's simply indescribable.

HCV Advocate

One by one we found it, the web site that would become instrumental in our journey. We finally had the answers we searched for, in an easy to understand format we longed for, HCV Advocate became our saving grace.

Today, I pay homage to a web site that began offering us guidance almost 15 years ago. In 1998 the information provided by "HCV Advocate" gave us freedom from the mental anguish and fear that goes along with this disease-the not knowing. Our devotion, and appreciation for the people's hepatitis C web site, runs deep.

During this dark time, HCV Advocate was our guiding light, it gave us accurate information and hope. We all read with enthusiasm each fact sheet, newsletter, and one extremely beneficial column deemed "HealthWise", authored by, Ms. Lucinda K. Porter, RN.

Ms. Porter contracted HCV in 1988 and went through treatment not once, but twice, her column first appeared in the 1998 second issue of HCV Advocate.

To understand the importance of this site and Ms. Lucinda K. Porter, let me give you a quick back story on HCV.

A point I feel compelled to make is that from 1992 to around 2001 many of us we were diagnosed or treated by our general practitioners, the advice we received was to go home and not worry about it. In those days we were told that HCV was a benign disease, with an emphasis on how brutal HCV therapy was, and in some cases worse than the disease itself.

HCV Advocate has been there from the beginning. We needed information, and HCV Advocate gave us what we needed. For many of us this site and founder Alan Franciscus, Editor-in-Chief validated our concern, in turn, we started to worry about it.

The easy to understand articles written by Ms. Lucinda K. Porter were read across the globe. We started to get the big picture, the insightful column gave us knowledge about this disease. We grew as patients, the community started to expect more from their physicians and demanded expert care. HCV Advocate saved many of us from denial, after all, most of our well meaning health care professionals were in denial. It was time to fight back, HCV Advocate and the HealthWise articles written by Ms. Porter showed us the way.

Below, I included a short time line with a few facts to shed light on the importance that HCV Advocate had to us, after all hepatitis C was still in it's early infancy.

In 1974, it was first recognized that not all cases of viral hepatitis were hepatitis A or hepatitis B. It proved difficult to identify the infectious agent responsible for these cases of non-A, non-B hepatitis. However, it become clear that many cases of post-transfusion non-A, non-B hepatitis are the result of infection with a new virus, hepatitis C.
Ten years later, in 1984 -
Scientists of the New York Blood Center have reported the discovery of a new virus they believe may be the major cause of hepatitis transmitted through blood transfusion.The report was the second in two weeks to claim discovery of the probable cause of most cases of post-transfusion hepatitis, a liver disease that affects 90,000 Americans each year. Whether or not the two reports represent the same virus is unknown. If either or both of the research teams that issued reports have found a major cause of this form of the disease, called non-A non-B hepatitis.

Dr. Prince said he did not believe the virus his group had found was a retrovirus. He proposes that it be called the ''hepatitis C virus.''

1986 - In the New England Journal Of Medicine

Treatment of chronic non-A, non-B hepatitis with recombinant human alpha interferon. A preliminary report.Volume 315:1575-1578 December 18, 1986

Blood screening for hepatitis C began in 1990, and in 1991 the FDA approved (Schering’s Intron A) - Alpha Interferon for the treatment of Hepatitis C. In 1998- the FDA approved Rebetron (Schering’s Intron A plus ribavirin) * For this blogger it was the drug of choice. Finally in 2001 (Schering’s pegylated interferon alpha-2b)- Peg-Intron was FDA approved followed in 2002 by Pegasys -(pegylated interferon alpha-2a). We really thought we were making progress. Who knew in 2011 we would have two protease inhibitors- telaprevir/boceprevir to combat this hideous virus.

The Book

This brings us back to the lovely, Ms. Lucinda K. Porter, RN. You may have noticed a link to her new book on the side bar. Which is available for purchase on December 1st.

Now for the much anticipated book, written with only one agenda in mind, to serve the large population of individuals living with hepatitis C.

Free from Hepatitis C: Your Complete Guide to Healing Hepatitis C
Written by Ms. Lucinda K. Porter, RN

Book Description

For decades, a diagnosis of hepatitis C was the equivalent of serving a life sentence--with a dangerous liver disease. It left patients frightened, confused, and vulnerable, and they took little comfort in knowing that, at best, their condition could be managed but not cured. All of that changed with the discovery that the hepatitis C virus (HCV) could be defeated with new treatments. To shed light on these groundbreaking treatments, Lucinda Porter, a registered nurse, a passionate HCV advocate, and a Hep C patient herself, has written this all-important guide. This comprehensive volume is a must for anyone considering, undergoing, or just wanting to understand HCV treatment.

Thank you HCV Advocate for over a decade of your contribution to a community which at one time had very little. On a personal note *without you I may not have searched out my treatment option's in 1999.

To you Ms. Porter, may your book reach the newly diagnosed, and the numerous people suffering with the consequences of hepatitis C.

Your name evokes respect, gratitude and affection, I feel privileged to be among the many people who have benefited from your articles over the past fifteen years. Thank you.

In 2011 HCV Advocate along with their incredible staff continue to educate the HCV community with new information, news, clinical trials, newsletters, updated information on the new drugs to treat HCV and the well written HealthWise column. The site is updated on a daily basis.


Alan Franciscus Editor-inChief

HCV Advocate
HCV/HBV Advocate Blog
HBV Advocate
Hepatitis & Tattoos
HCV Advocate Newsletters
Hepatitis C Treatments in Current Clinical Development

C.D. Mazoff, PhD- Webmaster and Managing Editor

Leslie Hoex
Design and Production Manager for Printed Materials

Rose Christensen
Office Manager

Lucinda K. Porter, RN
Nurse Educator, Contributor

Liz Highleyman

Jacques Chambers,CLU
Benefits Counselor, Contributor

Clara I. Maltrás
Spanish Translator

Magali Thomas
French Translator

Irina Gavrilova, MSc
Russian Translator

Christine Kukka
HBV Project Manager

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