Moving Forward at Annual Liver Life Walks

American Liver Foundation Connecticut Division
Moving Forward at
Annual Liver Life Walks
June 2013
Vol. 31 Issue 1
In This Issue:
Letter From the Chairman
2
New Board and MAC
3
Programming News
4-5
What is Fatty Liver Disease?
8
Upcoming Events
10
The 2013 Liver Life Walk plans are underway and we want YOU to join in on the
fun! The Liver Life Walk Hartford presented by Hartford Hospital will be held on
Sunday, September 22 at Rentschler Field
in East Hartford and the Liver Life Walk
Fairfield County will be held the following
Sunday, September 29 at Commons Park
at Harbor Point in Stamford. Last year’s
Walks raised over $214,000 for the fight
against liver disease. The goal this year is
to raise over $220,000. Funds raised will
support the Connecticut Division’s educational programs including the Treatment
Choices Initiative Program (TCI), The Love
Your Liver youth initiative, and the new
Liver Matters program as well as, research awards, advocacy and outreach.
Teams from all around the state of Connecticut are registering and organizing
fundraisers to support their team fundraising goals. Join now by going to
liverfoundation.org/walk.
This year’s Walk festivities will begin at
8:00am in Hartford and 9:00am in Stamford when registration opens, teams set
up in the Team Meeting Area and the
emcees kick off the stage program. Face
painters and balloon artists will be in the
Kid’s Corner, vendors will have free giveaways and sponsors will be on hand to
Page 1
share their information. At the Hartford
Walk the emcees will be Rachel Lutzberg
of Fox Connecticut and Renee DiNino of
Clear Channel Radio. During both stage
presentations you will hear from our LIVEr champions, Committee Chairmen and
many of our teams, sponsors and staff.
The official 5K walks will begin after a
warm-up exercise.
Both walks will have lots of free food and
drink: Subway sandwiches, fruit, Deep
River Snacks, Hint Water, and more. Dogs
and strollers are more than welcome to
attend.
You can join one of the Liver Life Walks by
simply going to :
www.liverfoundation.org/walk registering. We encourage everyone that attends
to make a donation and if you raise $100
or more you will receive a Liver Life Walk
T-shirt. Register now and you will receive
your own personal fundraising page to
help you raise money for the ALF. Another way to participate at the walk is to volunteer or become a sponsor.
For more information on the Liver Life
Walks contact, Events Manager, Kristen
Link at (203) 234-2022 or
[email protected].
Letter from the Chairman
I have just completed my first year as board chairman and I have to say I am surprised and thrilled at how much I have enjoyed
holding the position. It is not often that one gets lucky enough to have a Board / Medical Advisory Committee/ Associate Medical
Advisory Committee filled with energetic, intelligent, committed people, and an executive director that is superior to none, JoAnn
Thompson.
This past year has been a very emotional one for the division. We have strengthened our board with new members as we have
welcomed Renuka Umashanker, MD, David Roncari and Thomas Carley. Sadly we have lost 2 very important members with the
passing of Dr. David Hull, past Medical Advisory Committee Chairman and Joyce Willig a founding member of the “chapter” and
former National Board member. We will be forever grateful for their commitment and contribution to the American Liver Foundation. The Annual Golf Tournament has been re-named “The Dr. David Hull Memorial” in his honor.
This year the American Liver Foundation has seen significant changes in national leadership: Tom Nealon is now serving as the
National Board Chair and also acting CEO for the Foundation during this time of realignment. Tom began his journey with ALF in
2002 when he ran the Boston Marathon. In 2003 he was matched with a little boy named Zac that has liver disease and they have
continued to be a team, Tom running and Zac inspiring him. Tom has raised over a Million dollars to benefit ALF.
One of the most important directives we have is changing the public’s perception of liver disease, so in light of the CDC’s recent
recommendations that all baby boomers should be tested for Hep C, the division’s education committee has made it a priority to
get the message out about being tested and to provide information to people recently diagnosed with Hep C. The education committee with the help of Renee DiNino from Clear Channel CT produced an informative CD for patients with Hep C and have also
created an educational program for Primary Care Health Providers to increase their knowledge about the need to test baby boomers, what tests should be given and when to refer patients.
Fundraising continues to be a very important aspect of the chapter’s activities to support the programing that is done by the staff
and volunteers and to fund research. We started off the year with 14 runners raising funds and running in the Disney Marathon,
the Flavors 2013 once again exceeded our expectations raising a record amount of $245,000, now plans are underway for the first
LIVERide on June 30th, the Dr. David Hull Memorial Golf Classic on July 17 th, Tough Mudder on August 10th in Vermont and the two
Liver Life Walks; Hartford, September 22nd and Fairfield County, September 29th as well as the Hartford Marathon on October
12th. Congratulations to Renee DiNino, Flavors chairman for doing a fantastic job.
I would like to extend many thanks to our events managers Lia and Kristin for organizing the Liver Walks, Disney Marathon team,
LIVERide, Golf Classic and Hartford Marathon team with such energy and enthusiasm; and to Donna, program manager for providing educational programs and outreach to thousands of adults and children.
As the Connecticut Division continues to institute new programs, reach out with the national core programs and raise funds we
will also continue to support our National Chair Tom Nealon in; raising awareness, improving communication, and changing the
perception the world has of liver disease. We need your help to accomplish these goals, please consider being a volunteer at one
of our events or educational programs and or making a donation to the American Liver Foundation Sincerely,
Save The Date
13th Annual
Flavors of Connecticut
Robert Leventhal, MD
ALF CT Division Board, Chairman
Please Note: The articles contained in this newsletter are information
provided for information only. They do not constitute medical advice and
should not be relied upon as such. The American Liver Foundation (ALF)
does not engage in the practice of medicine. Under no circumstances does
ALF recommend particular treatments for specific individuals, and in all
cases, recommends that you consult with your physician before pursuing
any course of treatment. The ALF is a member of the National Health
Council.
Page 2
April 1, 2014
Aqua Turf Club
www.liverfoundation.org/flavorsofct
(203) 234-2022
Flavors 2014 Chairman:
Renee DiNino
The Division Welcomes New Board and MAC Members
David Roncari
Thomas Carley
Transplant Recipient
Volunteer
Liver Life Challenge National
LIVEr Champion and Alumni
Renuka Umashanker, MD
Gastroenterology Center
of Connecticut, P.C.
Affiliations:
Yale New Haven Hospital
Milford Hospital, and
Saint Raphael Campus
Transplant Recipient ,
Holds Annual Fundraiser in
honor of Dr. Polio,
Flavors 2013 Fund-A-Need
Presenter
Christine Van Cott, MD
Surgical Oncology and General Surgery
St. Vincent's Medical Center
Antonio Galvao Neto, M.D.
Clinical Associate Professor of Pathology
NYU Medical Center/ Tisch Hospital
VA Connecticut Health Care System
AnnMarie Liapakis, MD
Assistant Professor of Medicine
Digestive Diseases
Yale School of Medicine
Peter Yoo, MD
Assistant Professor of Surgery
Transplant
Yale University School of Medicine
Randall Zuckerman, MD
Surgical Oncology
St. Vincent’s Medical Center
Udeme Ekong, MD MPH
Associate Professor of Pediatrics
Gastroenterology
Medical Director, Pediatric Hepatology and
Pediatric Liver Transplantation
Yale University School of Medicine
Always Remember
David Hull, MD
Joyce Willig
Director, Clinical Transplantation
at Hartford Hospital
Member of the Connecticut Division’s
Board of Directors and past Medical Advisory
Chairman
Founding Member of the Connecticut Chapter
of the American Liver Foundation
1936-2013
1953-2013
Page 3
Website offers Help for People at
Risk for or Diagnosed with Hep C
The American Liver Foundation has a valuable new
online resource about all things related to hepatitis C,
which now affects (conservatively speaking) four million
Americans.
The new site, Hep C 123, provides information about risk
factors for hepatitis C, as well as guidelines about who
should be tested for the disease. Other helpful topics
include how to prepare for your medical appointments,
current treatment options for people who test positive
for hepatitis C (including “triple therapy” for patients
with certain strains of the virus) and financial issues associated with treatment. There is also a section dedicated to support for patients and caregivers, including an on
-line support community. Hep C 123 offers periodic
webcasts about hepatitis C-related issues, as well as the
opportunity to read about other people’s experiences
with diagnoses and treatments.
We encourage you to visit www.hepc123.org to learn
more about hepatitis C and its many related issues.
Hep C Resource Guide and Audio CD Available
The American Liver Foundation’s Connecticut Chapter has
produced an audio CD that it has packaged with the ALF’s
hepatitis C support guide, Newly-Diagnosed: Hepatitis C.
This CD, entitled Hepatitis C: Understanding Your Diagnosis, offers valuable information to individuals newly diagnosed with hepatitis C helping them understand various
aspects of the disease and treatment, as well as provide
answers to the many questions that they will have about
treatment choices, complications and outcomes.
The support guide and CD are available to physicians who
wish to distribute them as supplemental materials to their
patients at no charge and are also available to patients
and caregiversfrom the Connecticut Division by calling
(203) 234-2022 or [email protected]
Primary Care Providers Invited to Participate in
Educational Program
The Centers for Disease Control updated its recommendations for hepatitis C testing protocol last summer by
adding baby boomers to the list of
people who should have a one-time
test for Hepatitis C. Baby boomers,
classified as people born between
1945 and 1965, comprise 75% of thenewly diagnosed cases of hepatitis C.
Hepatitis C is often asymptomatic,
and when symptoms do occur they
present as flu-like in nature and are
often disregarded until more severe
symptoms occur. Baby boomers may
have contracted hepatitis C decades
ago through experimental IV needle
use, exposure to contaminated blood
during medical procedures such as
transfusions prior to 1992, hemodialysis, or unsanitary tattooing.
Primary care providers are encouraged to offer one-time hepatitis C
testing to ALL baby boomers in their
practices. The Medical Advisory Committee of the Connecticut Division has
developed a 20-minute educational
program for primary care providers
that informs them about the new
CDC testing recommendations and
why testing baby boomers is critical
in diagnosing as-yet unknown cases
of hepatitis C.
The program is conducted by members of the Medical Advisory Committee and guides primary care physicians through the process of the ini-
The ALF national Helpline has expanded its hours, calls will now
be taken from 9 am – 7 pm EST. The helpline has 2 lines; where
by a caller can ask for Hepatitis C & transplant information from
one line and general liver health information from the 2 nd line.
1-800-GO-LIVER
Page 4
tial hepatitis C test. It provides information about the tests that should be
conducted if that initial test is positive.
Finally, the program helps primary
care practitioners understand when it
is appropriate to refer patients to
specialists for follow-up care for HCV.
All program attendees are provided
with take-away tools that they can
refer to after the program is completed.
For more information or to schedule
a Primary Care Program for your practice, contact the Connecticut Division
at 203-234-2022.
Patient and Public Education Continues to be a
Core Focus
The ALF offers three core educational programs that help
the public understand how to prevent liver disease as well
as current treatments for liver disease, specifically hepatitis C. All educational programs are provided free of
charge upon request.
The Liver Matters program was developed for the general
adult population and has been presented to corporations,
community groups, service organizations such as Rotary
Clubs, and senior centers. The program provides information about the importance of healthy liver function
and action steps to reduce injury or damage to the liver.
Topics include viral diseases, diet and liver health, medications and their possible effects on the liver, among others. Participants are encouraged to partner with their
health care providers and have appropriate tests for liver
function, as well as seek one-time hepatitis C testing if
they have a history of risk factors or are in the baby
boomer generation.
Love Your Liver is a youth education program that is presented to middle and high school students and covers
many of the same topics as Liver Matters but in ageappropriate language. Students learn that they cannot be
healthy without a functioning liver and learn that liver
disease can occur through IV needle usage, misuse of alcohol or other toxins, poor diet and lack of exercise, unsanitary tattooing/body piercing, and unprotected sexual
activity. This program has reached over 25,000 Connecticut students over the past four years.
Finally, the ALF provides the Viral Hepatitis Treatment
Choices Initiative program to populations with elevated
risk for hepatitis C. These groups include people in drug
rehabilitation treatment programs and other community
groups. Participants learn about the transmission of Hepatitis C, diagnosis procedures, treatment choices, and
how to prevent the spread of the virus to others if they
are already infected.
To schedule one of the ALF’s programs for your corporation, community group or school please contact Donna
Sciacca, Program Manager at 203-234-2022 or
[email protected].
Page 5
12th Annual Flavors of Connecticut Raises $242,500
Chef crew from Caseus Fromagerie & Bistro
The evening could not have been more
outstanding for the guests at the 12th
Annual Flavors of Connecticut. Throughout the evening you could hear the tingling of taste buds and the sizzling of the
pans as the guests enjoyed the unique
Renee DiNino-Event Chairman and Chef
Jason Sobocinski, Chef Chairman. The
cocktail reception was hosted by Northeast Wine Brokers, Saratoga Springs
Water, Thurston Foods, National Watermelon Promotion Board and Olde Burnside Brewing Company. Guests were
given the opportunity to bid on over 200
unique silent auction items. These
items included gift certificates to local
businesses, culinary experiences with
Flavors chefs, vacation packages, fine
wines, sports memorabilia, spa packages
and more. The silent auction raised over
$45,000 of the funds brought in that
night. The cocktail reception offered
guests a chance to try each chef’s culi-
Hartford Hospital guests enjoy their meal at Treva
Chef Prasad Chirnomula and Dr. Leventhal
Chef Carlos
Hernandez
presents his
dessert
Tim Scott of Geronimo Southwest Grill,
Arlene Ghent of Ghent Catering Company, Billy Grant of Grant’s Restaurant,
Manuel Romero of Ibiza, Juan Garcia of
Ibiza Tapas Wine Bar, Dan Fortin of Infinity Bistro, Julio Cancho of J RestauBar, Jonathan Harris of J. Christian’s Restaurant, Nicola Mancini of La Tavola
Ristorante, Edward Varipapa of Leon’s
Restaurant, Fico Cecunjanin of Luce ResChef Peter Hamme Cooking Tableside
culinary flavors prepared by thirty four
of the most reputable chefs in Connecticut. This annual Flavors had yet another
sold out crowd of over 420 guests on
April 9th and raised over $245,000 for
liver disease research, education and
support, more than any previous Flavors
event raised. The Connecticut Division
staff would like to extend our sincerest
gratitude to all who attended and supported this year’s Flavors event and to
the restaurants for their participation.
Guests of Flavors were welcomed by
Mr. and Mrs. John Hampton
nary expertise with passed hors
d’eouvres such as as taylor bay scallops
with lavender, lime and lychees from
Michael Jordan’s Steakhouse and
house made ricotta with sea salt and
truffle from Grant’s Restaurant Group.
Participating restaurants and chefs included:
Will Talamelli of 116 Crown, Eric Violante of Backstage Eat Drink Live, Adam
Greenberg of Barcelona Wine Bar, Tim
East of Besito, Gabriel Carreno of Bistro
Mediterranean & Tapas Bar, Bryan Malcarney of Blue Lemon, Harry Schwartz of
Café Colt & Event Liasons, Vinne Carbone of Carbone’s Ristorante, John
Naughright and Jason Sobocinski of Caseus Fromagerie & Bistro, Mario Cirikovic or Cugino’s Restaurant, David Foster and Dan Parillo of Da Legna, Joseph
Bucholz of Esca Restaurant & Wine Bar,
Page 6
taurant, Todd Mark Miller of Michael
Jordan’s Steakhouse, James Martell of
On the Rocks at Fox Hopyard, Thomas
Schultz of Park Central Tavern, Jeffrey
Lizotte of The Restaurant On20, Angelo
Marini and Carlos Pineda of Sal e Pepe
Italian Bistro, Carlos Hernandez of Solun
Tapas Bar, Peter Hamme of The Stone
House Restaurant, Prasad Chirnomula of
Thali, John Medonis of Treva Restaurant, Jean-Pierre Vuillermet of Union
League Café and Robert Malfucci of ViJoAnn Thompson, Dr. Leventhal and Renee DiNino
Chef Fico Cecunjanin put the finishing
touches on his main dish
Fund A Need presenter, David Roncari
with guests
Chefs of Esca Wine Bar
Intricate place setting and design at On The
Rocks table
THANK YOU TO ALL FLAVORS CHEFS!!
Tom Nealon, National Board Chairman and guests at their
award winning table from La Tavola Ristorante
Flavors was emceed by Chairman, Renee
DiNino, Midday Host of The River 105.9
and the Fund-a-Need speaker was David
Roncari, a transplant recipient. David
shared his journey of living with liver disease in an effort to raise funds to support
research in the fight against liver disease.
His efforts raised over $21,000.
Paul Stansel of Absolute Auctions conducted the evening’s live auction, raising
$17,000. Some of the live auction items
that evening included: A pizza truck party
for fifty people from DaLegna, a 3-night
stay in Turks & Caicos, a trip to see Donny
and Marie in Las Vegas, and a Kelly Clarkson augographed guitar.
In addition to the amazing cuisine and
auction donations compliments of the
participating chefs, they each brought in
additional staff and vendors to create
extraordinary and unique table designs.
These designs topped off the evening’s
array of wonderful creations. Table
awards were given for: Best Overall Table
Design to Geronimo Southwest Grill for
Tim’s outstanding organically made Mexican Desert themed table with live scorpion’s and all! Most Elegant to J. Christian’s
classy take on Mardi Gras, Best Floral
Design to 116 Crown; Most Witty La Tavola Ristorante for their La Tavola life sized
carousel centerpiece; Best Giveaway to
Solun Tapas Bar and Best “Something Out
of Nothing” to Da Legna for Dave Foster’s
homemade maple syrup.
We would like to thank all of the Flavors
of Connecticut
2012speaker,
sponsors:
Presenting
Fund –A-Cure
Taylor
Curran
Sponsor, Hartford
National
(second toHospital;
left) with her
family Gold
Corporate Sponsor, Salix Pharmaceuticals; National Silver Corporate Sponsor,
MERCK, Media Sponsor, Community Access Radio; Platinum Sponsors: Naugatuck
Valley Gastroenterology, Boehringer
Ingelheim , and Vertex Pharmaceuticals;
Gold Sponsors, Bristol-Myers Squibb, Connecticut Gastroenterology Associates,
Connecticut Gastroenterology Consultants, Connecticut GI, Digestive Disease
Consultants, Gastroentereology Center of
Connecticut, Greater Hartford Jaycees
Photography by BREA Photos Www.breaphotosgalleries.com Page 7
Foundation, Kadmon Corporation, Mr.
and Mrs. Nicholas DeRoma, You Sung
Sang, MD, Kolala Sridhar, MD, and Jeannine Hampton, APRN, Webster Bank, Yale
New Haven Digestive Disease, Yale Liver
Center, Yale New Haven Hospital, and
Karan Emerick, MD; Silver Sponsors, Mr.
Thomas Nealon III, AcariaHealth, BioPlus
Specialty Pharmacy, CVS Caremark, Deep
River Snacks, Drapp & Jaumann, LLC,
Genentech, Oceanus Insurance, Jefferson
Radiology, Saint Francis Hospital, and
Travel Insured International; Exhibit Sponsors, Janssen Biotech, Inc., Gilead Sciences, Coram, Onyx Pharmaceuticals, NPS
Pharmaceuticals, and Warner Chilcott.
Enjoy all of the Flavors of Connecticut
Chefs by watching their videos online as
they cook their favorite dishes at
www.behindthepan.com. For more information on reserving a table at the 2013
Flavors on April 1st call 203-234-2022.
Remember, Flavors is always sold out, so
reserve your table now!
Hepatitis C and Liver Transplantation
By Caroline Rochon, MD, FACS
Transplant and Hepatobiliary Surgeon, Hartford Hospital
lowing transplantation for HCV, how patients
actually behave clinically is extremely variable. For example, HCV recurrence may be
Originally called non-A non-B hepatitis, the existence of the Hepatitis C accompanied by abnormal liver function
virus (HCV) was postulated in the 1970s and proven in 1989. Hepatitis blood tests without symptoms, symptoms of
C virus (HCV) infection causes about 40 percent of all chronic liver disfatigue and mild jaundiced with signs of disease in the United States and HCV-associated cirrhosis is the most com- ease activity on liver biopsy or in a worst-case
mon indication for liver transplantation among adults. Unfortunately,
scenario, very abnormal blood tests and rapliver transplantation does not cure HCV, a popular misconception. HCV idly progressive recurrent liver failure know
infection remains a problem after transplantation and recurrent hepatic as “ cholestatic hepatitis with rapid fibrosis”
infection is the leading cause of graft failure. Recurrence of HCV folon biopsy leading to the development of
lowing liver transplantation occurs in nearly 100% of patients.
cirrhosis and graft failure . Unfortunately,
Studies demonstrate that the recurrent disease following liver transthis can sometimes occur within one year following liver transplantaplantation results from the same viral strain present before. Reinfection.
tion at the time of transplantation is not surprising, since almost all
PREVENTION OF POST TRANSPLANT RECURRENCE
patients have viruses circulating through their blood at this time. Rein- Eradication of HCV infection prior to transplantation would be the ideal
fection occurs during reperfusion of the new liver in the operating
approach, as patients who undergo transplantation in the absence of
room, and viral titers reach pre-transplant levels within 72 hours.
the virus in their blood are much less likely to have recurrent infection.
The exact factors that influence how a patient will do after transplanta- However, treatment of patients with decompensated cirrhosis is diffition for hepatitis C are not fully understood, but some key variables
cult. When patients are sick enough to be transplant candidates, they
have been identified and are always taken in to account by members of are usually also weak, sometimes confused and often fragile. The treatthe transplant team. Donor characteristics for example are important. ment drugs, which have numerous side effects, are difficult to tolerate.
For unknown reasons, the strongest predictor of outcomes after trans- A large proportion of patients never finish the full course of treatment
plantation is donor age. Although grafts from donors aged 60 to 80
due to the numerous side effects. There is no consensus on the role of
years very well in non-hepatitis C infected patients, Hepatitis C recurpreemptive therapy following transplantation prior to HCV-related liver
rence may be more severe when older donors are used.
injury from recurrent infection. There is also no evidence to support a
Characteristics of the patient’s virus itself can also have an impact. The survival benefit for therapy; thus, preemptive therapy is unfortunately
influence of HCV genotype (particularly genotype 1b) on the severity of not currently supported by available data.
disease recurrence following OLT is controversy. It is possible that paTREATMENT OF POST TRANSPLANT RECURRENCE
tients with genotype 1b Hepatitis C recur quicker and with more severi- Optimal treatment of recurrence is unclear. Treatment is generally
ty post liver transplantation than other genotypes. Not all studies
started only if there are signs of significant liver injury on biopsy (Grade
agree on this however. The blood virus levels of Hepatitis C increase
3 or 4 inflammation or Stage 2 through 4 fibrosis). In addition to changfrom 4- to 100-fold following liver transplantation. However, it is uning the immunosuppression drugs, specific treatments for HCV recurcertain how that affects outcomes.
rence includes in most cases a course of combination therapy with peg
Because of the shortage of organs, transplantation of livers from HCVinterferon plus ribavirin. However, up to 50 percent of patients drop
infected donors to HCV-infected recipients
out due to side effects (mainly anemia). The optimal
has been attempted. Studies, including large
duration of therapy is unclear; there is some eviUnited Network for Organ Sharing (UNOS)
dence that 12 months of therapy is no better than six
database studies, found that five-year survivmonths; meanwhile there is also suggestion that
al was similar to HCV-infected recipients who
continuous treatment may be required for patients
received grafts from HCV-negative donors.
with severe early recurrent disease. Studies are also
Finally, the level and type of immunosuppresneeded regarding the efficacy and safety of the new
sion drugs following transplantation is likely
directly acting antivirals (boceprevir and telaprevir)
influence the severity of disease recurrence.
in this setting. Pilot studies are promising but one
The impact of immunosuppression is most
concern is the risk of drug interactions between
pronounced when high-intensity regimens
telaprevir and immunosuppressant medications.
are used to treat acute rejection.
Retransplantation
POST TRANSPLANT CLINICAL COURSE
Disease recurrence may ultimately lead to graft failAll patients transplanted for hepatitis C get
ure and the need for retransplantation. Indications
closely evaluated for disease recurrence post
and contraindications for retransplantation remain
transplantation. The evaluation, beyond the
unclear and practices vary widely among transplant
routine blood tests and imaging done for all
centers. Unfortunately, the patients who get retransplant patients, includes regular viral
transplanted for recurrent hepatitis C often do not
testing and liver biopsies. Five-year survival is
fare well.
approximately 60 to 80 percent in most seIn summary, although liver transplantation does not
ries, which is comparable to transplants performed for other reasons.
cure hepatitis C, it is the best option for patients with end stage liver
However, the course of HCV infection after transplant is accelerated
disease caused by the virus. I often tell patients the numbers I tell you
compared to the pre-transplant setting, with 10 to 20 percent of patoday may not be true tomorrow, because science is evolving quickly in
tients developing cirrhosis only five years post-transplantation
transplantation and in the treatment of hepatitis C. Patients are doing
(compared to 20% at 20 years before transplant) .
better and better every year and we, the transplant community will
Although blood test universally detects the virus in patient’s blood fol- continue to show this deadly virus that we’re ready for a good fight.
Page 8
WHAT IS…
Biliary Artresia?
Biliary atresia is inflammation of the large bile ducts outside the liver
that irreversibly blocks bile flow from the liver to the small intestine. It
is the most common cause of cholestatic jaundice in infants and a common reason for liver transplantation in children. It affects 1:8,000 to
1:18,000 live births worldwide. There are 2 forms of biliary atresia: an
embryonic form that accounts for ~15% to 20% of cases, and an acquired form which accounts for ~85% of cases.
The cause of biliary atresia is unknown; however, there is a brisk inflammatory response involving the bile ducts inside and outside the
liver. The bile ducts are gradually destroyed and replaced with scar
tissue. The bile ducts eventually get blocked and normal bile flow ceases resulting in cholestasis. Cholestasis is reduced or stopped bile flow.
Babies who have the acquired form of biliary atresia typically are well
at birth and develop jaundice in the first weeks after birth. Jaundice is
a yellow discoloration of the skin and whites of the eyes due to an
abnormally high level of bilirubin (bile pigment) in the blood stream.
Jaundice is usually the first sign and sometimes the only sign of liver
disease. When blockage of bile flow occurs, the stool loses its normal
pigmentation and becomes light colored or clay-colored.
Early diagnosis of biliary atresia is crucial as the long-term outcome is
dependent on the age of treatment. Tests that are done to make a
diagnosis of biliary atresia include blood tests, radiology exams and a
liver biopsy (figure 1), all of which help point to or away from a diagnosis of biliary atresia. The gold standard for diagnosis of biliary atresia is
an intraoperative cholangiogram, a surgical procedure that shows
whether the bile ducts are open or not.
Treatment of confirmed biliary atresia is surgery. A hepatoportoenterostomy, commonly called a Kasai procedure, is the initial procedure of
choice (figure 2). Here, the surgeons remove the blocked bile ducts;
and a section of the small intestine is connected directly to the liver to
initiate bile flow from the liver to the intestine. Following the Kasai
procedure, antibiotics are usually given to prevent infection of the liver
from the small intestine. This infection is called cholangitis. Infants
with biliary atresia also need special
By: Udeme D. Ekong MD MPH
vitamins; a medication that thins the Associate Professor of Pediatrics
Yale School of Medicine
bile called Ursodiol as well as specialized formulas to ensure proper nutriRobert A. Cowles, MD
tion.
Associate Professor of Surgery
The chance of a successful Kasai proYale School of Medicine
cedure is best if it is done before the
baby is 2-months of age. However, Manuel Rodriguez-Davalos, MD
even with early intervention, inflam- Associate Professor of Surgery &
Pediatrics
mation with scarring of the liver conYale School of Medicine
tinues resulting in cirrhosis. Liver
transplantation is required if continued scarring of the liver causes it to fail. Generally, ~50% of infants
who undergo a Kasai procedure will need a liver transplant by 2-years
of age; ~ 25% will need a liver transplant by their teenage years because of slowly progressive cirrhosis; ~20% of those undergoing a Kasai
will survive to their 20’s without needing a liver transplant.
The outcome for babies diagnosed with biliary atresia and who undergo a Kasai procedure is very dependent upon how well the bile flows
out of the liver after this surgery. Close monitoring of blood tests and
the appearance (color) of the stool will help predict whether the surgery has been a success or whether bile flow continues to be poor. An
infant with a total bilirubin level greater than 6 mg/dl 3-months following a Kasai, has a high likelihood of needing a liver transplant by 2years of age. Similarly, a total bilirubin level between 2 and 6 mg/dl 3months following a Kasai and growth failure is associated with a high
likelihood of needing a liver transplant by 2-years of age.
Overall, the long-term outcome for infants and children with biliary
atresia has improved dramatically over the last several decades. Until
the 1960s, few treatments existed for biliary atresia and the outcome
was poor. Since then, the development and refinement in the Kasai
procedure and liver transplantation has resulted in survival rates of
95% or greater in experienced multidisciplinary centers.
Fatty Liver Disease?
Fatty liver disease is a disease
By Colin Swales, MD
where fat builds up inside the liver
Hepatologist, Hartford Hospital
cell, known as the hepatocyte. This
fat, in some people, can produce
inflammation. That inflammation, over time, can lead to cirrhosis.
Fatty liver disease is a disease which on liver biopsy looks just like alcoholic liver disease. However, many people who have fatty liver disease
do not drink an unhealthy amount of alcohol. Therefore, the term nonalcoholic fatty liver disease has been coined. In most people, it is
thought the disease is caused by having a high or unhealthy body
weight. Many other diseases caused by being overweight are found in
common with fatty liver disease, such as diabetes and high cholesterol.
In fact, one of the most prevalent groups of people to have fatty liver
disease is people who are undergoing weight-loss surgery. Sometimes,
fatty liver is caused by rare metabolic diseases or medications.
Why am I hearing so much about this now?
As an entity, fatty liver disease is on the rise. This happens to be in parallel with the growth of overweight and obesity in the United States.
Also, many people who are found at a late stage with cirrhosis may no
longer have signs of fatty liver on their liver biopsy. Previously, these
people were called cryptogenic cirrhosis. We now know that most of
these people had fatty liver disease originally.
As mentioned, this disease is very common. In the Dallas heart study, it
was found that 37% of people enrolled had evidence of excessive fat in
their liver on scanning.
What can be done about this problem?
The good news: it is thought that the majority of cases can be reversed.
The safest and healthiest way to stop this problem in its tracks is to lose
weight. It is known that weight-loss can cause the fat in the liver to
vanish- in some series in as little as three weeks. What I tell my patients
is they do not need to go back down to their ideal body weight, but
even modest 5-10 percent of their weight can make a big difference.
Along those lines, assessments have shown that people who undergo
weight-loss surgery and are successful have stabilization or reversal of
their disease on subsequent liver biopsy.
There is a great deal of hope that medications will be able to retard the
progress of this disease. Many medications that target obesity, overweight, and the other metabolic consequences of that such as diabetes
medications have been tested in some clinical trials. The majority of the
scientific information available suggests that if they work they are marginal at best. The best done clinical trial sponsored by the National
Institutes of Health called pivens looked at vitamin E at a dose of 800
units daily. In that trial, it was shown that vitamin E can improve the
appearance of this disease on a liver biopsy. However, it remains to be
seen whether or not this medication can prevent cirrhosis and its consequences. Tempering enthusiasm about vitamin E, is a meta-analysis
of trials done looking at vitamin E used to prevent heart disease. In that
large pooling of patients, is was thought that the vitamin E could potentially be harmful in someway. Therefore, decisions about vitamin E are
handled on a case-by-case basis in our office, and if you're thinking
about this treatment you should talk to your doctor.
Fatty liver disease appears to be a very common problem, and one
which we will be dealing with in liver clinics for some time. We are
learning more about this every day and many clinicians and scientists
are working actively on hopefully curing this important problem .
Page 9
Walt Disney World® Marathon Weekend 2014
Full & Half Marathon, Goofy Challenge and Dopey Challenge…
Once again the CT Division is gearing up for the Liver Life Challenge: Walt Disney World® Marathon Weekend presented by Cigna.
For the 4th year in a row the ALF will bring a dedicated team to one of the most sought after, fun race experiences while raising
funds for the fight against liver disease. Each year Team Connecticut has grown in magnitude and we are looking forward to this
year being the best yet.
Last year not only was each runner dedicating their race to their loved ones with liver disease, the celebration of their life as a liver
patient or in memory of someone who has passed from liver disease, they were also running in honor of LIVEr Champion, Sam
Grover, a 2 year old child suffering from liver disease. Sam’s mom, Darien also ran on the team in honor of her son.
This year, Team Connecticut’s runners raised an extraordinary $46,000!! .
In addition to Team Connecticut, Cleveland, Chicago and a Virtual Team will join us in Disney 2014 to represent the American
Liver Foundation from January 8-12.
The Liver Life Challenge program is designed to help train all levels of runners , even those who have never run before, for the half
or full marathon. We provide the coach, training tips, clinics, long run meeting locations, fundraising advice and support.
We want YOU to join us this year for Disney Marathon as Team Connecticut forms again for another endurance adventure and
more magical memories. Call (203) 234-2022 or visit www.liverfoundation.org/disneymarathon for more information.
ING Hartford Marathon 2013
Full & Half Marathon, 5k Run/Walk and Team Relay…
On Saturday, October, 12, 2013 the Liver Life Challenge team will come together and take part in the ING Hartford Marathon races. We are asking runners and walkers of all levels to join our team and help create awareness for the American Liver Foundation!
There is no fundraising minimum commitment to join the team for this event! We also have a expert running coach that will work
with and train you for a small fundraising commitment of $200.
We are also looking for volunteers to work at the ING Hartford Marathon! If you are interested or for more information on volunteering or participating on the team please contact us at (203) 234-2022 or [email protected]
Dr. David Hull Memorial Golf Classic
Honoring a Hero
Page 10
Remembrances
George Manguilli
The Fers and Stamp
Families
Mr. and Mrs. Robert
Stellavato
Mr. and Mrs.
Matthew Pisani
Shelly and Kasey
Sullivan
Mr. and Mrs. Joseph
Ogle
Mr. and Mrs. Joseph
Sierzputowski
Gordon and Marjorie
Cohen
Milton and Sondra
Bernblum
Joseph Dowling
S.Z. and D.R.
Mackowicki
Louis and Jennifer
Altschuler
Mary Rearson
Mel Wolpert
Carmelo Scarfo
Donald and Janice
Brown
JoAnn Thompson
Lorraine and Tom
Cirillo and Family
Rosemarie DeCapua
and Family
Lawerence and Patricia Longo, Jr
Mr. and Mrs. Chris
Eno
Philip Scarfo
Howard and Charlotte Burkholz
Felice Eskin
Jennifer Potito
Charlene Disler
John “Jack” Daly
Gertrude Beckwith
Phylis R. Johnson
Sal and Doreen
D’Auria
George and Colleen
Belbusti
David and Eileen
Bujalski
CT Lacrosse Foundation
Marilyn Kolwicz
Joann Ottens
Judith Locke
Jeremy Waggoner
George and Solvej
Waggoner
Sprague Rod & Gun
Club
Rebecca Everett
Barry and Cecile
Feldman
Patricia Autencio
Sylvia Kojima
Kirk Waggoner
Richard Edward
Kocielo
Jack Douton
Bob Dona
Ron Dona
Jack Margan
Stan Bourdish
John Cutone
Walter Beauchamp
John Douton
Mickey and John
Flanagan
Terri Gelinas
Patricia DeMatteo
Christine DiPietro
Ken Crilly
Ken and Sandy Trifino
Linda Aldridge
Frank Trifiro
Thomas Pruzinsky
Linda Mack
Mary Griffin
Tom Caraher
Frank Santa-Donato
Paul DeSimone
Jim Kerley
James Mitchel
Clarence “JR” Gould
Carol and Nancy
Einstein
Jarvis Production
Corporation
Elizabeth Dowling
William Thompson
Michael and Sue
Berger
Seasons Federal
Credit Union
Kathleen Larke
Nancy Offenberg
The Willig Family
Keith Iodice
Karen and Russ
Bruneau
Patricia Fekete
Nancy Geromin
Brad Shwidock
Ina and Paul Haller
JoAnn Thompson
Troy Insurance, Inc
Donald Case
Audrey Frankenburg
Eileen Ascher
Benjamin Frimmer
Penelope Wolff
Cindy Bamatter
Mark Plotzky
Martin Butensky
Jane Meyer
Audrey Schechter
Aline Melzer
Scott Piskin
Steven Rothenberg
Seymour Putterman
Maggie Allman
Bina Jariwala
Anna Karidas
Jordana Lubliner
Stefanie Milligan
Amy Temple
Alan Freeman
Nancy Spaulding
Barbara Krasner
Martin Levine
Marjory Cole
Lynne Boccuzzi
Joyce Willig
Bernard Miller
Deborah and Wallace Zuckerman
Donate Life Connecticut
Sid and Frances Stein
Bonnie Goldberg
Evelyn and Warren
Silver
JoAnn Thompson
Reggie Belmont
Alice Baron
Mr. and Mrs. Timothy Samway
Hyla and Barry Vine
Jim and Beth
Holzman
Mrs. Fran Weiss
Anita NathanMichelson
Deborah and Robert
Feinson
Mr. and Mrs. Gene
Carter
Ms. Pat Toole
Meryl Kessler
Beverly Landau
David Ives– TVEyes
Cheryl Glickstein
Nicolas Mandelkern
Fitness
Deb and Gary
Brownstein
Jeffrey and Christine
Kiely
Tamar Taddei, MD
Bradford Collins
Joyce Furman
Barbara Mezoff
Bonnie Goldberg
Jose “Quintas”
Fernandes
Maria and Lydia
Gerard
Gary Prushko
Precision Computer
Services
Maria Lage
Amandio DaSilva
Valentin Baptista
Isabel Barroso
Augusto Pereira and
Family
Victor Frazao
Brian Curry
Christine Pereira
Cynthia McDonald
Rollin Needham
Sara and Jeff Jones
Rosanne and Jim
Richard
The Hurley MFG
Company
Lenni-Lee Wilson
Catherine Curran
Barbara Arnold
Julie Anne Fosdick
Terence Arico
Lori Bradshaw
Marilyn Toomey
Claudette Kleczkowski
Kristen Furs Kayfus
Kathy Li
Camille Cerullo
Antonia Henley
Lisa McMullen
Alfred DaDalt
Mary McMullen
Madelyn Mackovich
Gabrielle Lazzerin
Julian DeCicco
Kathleen Ladr
Lynn Carpenter
David Hull, MD
Bonnie Goldberg
Barbara Porter
JoAnn Thompson
Reggie Belmont
Mr. and Mrs. Illescas
Steven Robert Fox
Julie Coscarelli, +45
Charlotte Zultowsky
Page 11
Betty Ventry
Claire Hartling
Schania Zelvin
Sandra Epstein
Reva Coleman
Cathy Saiff
Cheryl Morosky
Mary Flynn
Barry Sheriff
Gertrude Marquay
Rita Marcinkus
Margorie “Marg”
Ross
Mr. and Mrs. John
Gutowski
Madeline Mary Tobin Naturale
Lois O’Hare
William White, Sr
Kathleen Conran
Michael Penn
Diann Rohde
Maureen Taranto
Nancy Zezima
Nancy Holmes Holcombe
Richard Parker
Douglas Thompson
Dawn Grace
Joyce Laponte
Lynn Frances
Costello
Elaine Keeley
Rick Chaney
Howard Smith
Nick Slivka
Kerri Slivka
Sonya “Sunny” Krasner
Barbara Krasner
United States Unilever
Foundation, Inc.
John “Jack”
Jenkinson, III
Jean Hust-Platz
Michael Curtin
Michael Batson
David Duguay
Linda Ann Truskaukas
Joanne Gregg
Judith Brennan
Becker’s Diamonds
& Fine Jewelry
Roger Bullock
Anthony Morelli
Geraldine McDermott Armstrong
Mary Welch
Pat Welch
Judith Busch
Lawrence Post
Mary Weiner
Mark Prukalski
HONORARIUMS:
John Polio, MD
Cheryl and David
Dickerson
Ed Patz
Stella Riccio
Zenas Lu
Irmgard Meisterling
Paul H. Landi
Bryan Morris
Christopher Martin
Patou Martin
Valerie Morris
Kimberly Glenn
Sukru Emre, MD
M. Rodriguez
Bonnie Goldberg
Susan Zucker
Judith Murphy
Stephanie Armstrong
JoAnn Thompson
James Boyer, MD
Neil Droney
John Droney
Mason Platt
Dr. David Hass
Annabelle May
Thompson
Dr. David Hass
Non Profit Org.
U.S. Postage
PAID
New Haven, CT
Permit #350
This issue of the newsletter is sponsored by the Maximilian E. and Marion O. Hoffman, Foundation, INC.
The newsletter of the Connecticut Division of the American Liver Foundation is published annually.
Our Mission
The American Liver Foundation works to facilitate, advocate and promote education, support and research for the prevention, treatment and cure of liver disease.
Robert Leventhal, MD,FACP, AGAP Chairman
John Tomich, Esq., Vice Chairman
John Polio, MD, Vice Chairman
Betsy Boatman
Yolanda Belmont, LCSW
Agnieszka Buller
Thomas Carley
Renee DiNino
Jeannine Hampton, APRN
Martin Hoffman, DO
Kathryn Jack, MSN, FNP, BC
Rodney LeBlanc
Robert Leventhal, MD
Juan Carlos Lopez-Talavera, MD, PhD
Catherine Petraiuolo
David Roncari
Tamar Taddei, MD
Helen Tomich
Zvi Laurence Cole
JoAnn Thompson
James. L. Boyer, MD, FACP
Bonnie Goldberg
Joyce Willig
David Hull, MD
Guadalupe Garcia-Tsao, MD
Yale University School of Medicine and
VA Healthcare System
Tamar Taddei, MD, Chairman
Yale New Haven Hospital
Renuka Umashanker, MD, Vice Chairman
Hospital of St. Raphael
Jeannine Hampton, APRN Associate Chairman
Norwich GI Associates
David Assis, MD
Yale-New Haven Hospital
James Boyer, MD, FACP
Yale University School of Medicine
Myron Brand, MD
Hospital of St. Raphael and
Yale-New Haven Hospital
Joel Garsten, MD, FACP, FACG, AGAF
Waterbury Hospital
John Polio, MD
St. Francis Hospital and Yale-New Haven
Hospital
Steven Gorelick, MD
Danbury Hospital
Manuel Rodriguez-Davalos, MD
Yale University School of Medicine
Martin Hoffman, DO
St. Francis Hospital and
Yale-New Haven Hospital
You Sung Sang, MD
Norwich GI Associates
Jonathan Israel, MD
Hartford Hospital
Sofia Simona Jakab, MD
Yale-New Haven Hospital
Matthew Brown, MD
Hartford Hospital
Sanjay Kukarni, MD
Yale-New Haven Hospital
Cary Caldwell, MD
Hospital of St. Raphael and
Yale-New Haven Hospital
Anne Lally, MD
Hartford Hospital
Dean Chang, MD
Hospital of St. Raphael
Udeme Ekong, MD MPH
Yale University School of Medisine
Karan Emerick, MD, MSCI
Connecticut Children's Medical Center
Sukru Emre, MD
Yale University School of Medicine
Antonio Galvao Neto, MD
NYU Medical Center/Tisch Hospital
VA Healthcare System
Michael Nathanson, MD., PhD
Yale University School of Medicine
Robert Leventhal, MD, FACG, AGAF
Waterbury Hospital
AnnMarie Liaipakis, MD
Yale University School of Medicine
Joseph Lim, MD
Yale University School of Medicine
Kisha Mitchell, MD
Yale University School of Medicine
Douglas Miller, MD, FAGA, MBA
Midstate Medical Center
Pramod Mistry, MD, PhD, FRCP
Yale-New Haven Hospital and
Yale University School of Medicine
Page 12
Patricia Scheiner, MD
Hartford Hospital
Michael Schilsky, MD
Yale University School of Medicine
Harold Schwartz, MD
Griffin Hospital
Kolala Sridhar, MD FACG, AGAF
Norwich GI Associates
Mario Strazzabosco, MD, PhD
Yale University School of Medicine
Colin Swales, MD
Hartford Hospital
Christine Van Cott, MD
St. Vincent’s Medical Center
Jonathan White, MD
Midstate Medical Center
George Wu, MD
UConn Health Center
Peter Yoo, MD
Yale University School of Medicine
Randall Zuckerman, MD
St. Vincent’s Medical Center