Illinois Chapter - Spring 2002 LIFE Newsletter

Illinois Chapter
Volume II, Issue II
2002
Your Educational Resource for Liver Health and Diseases
Hepatitis C Making National Headlines
The cover of the April 22, 2002 issue of Newsweek featured Hepatitis C with a
tag line reading Over 3 Million Americans Are Infected With the Stealth
Virus. Most Don’t Know It. The information in this seven-page article ranges
from risk factors, disease progression, treatments, and concludes with an article
regarding living donors. The article also profiles people from decidedly different walks of life who have contracted hepatitis C – a housewife, firefighter, lieutenant colonel,
medical technician as well as celebrities Pamela Anderson, David Marks and Naomi Judd.
American Liver Foundation’s President and Chief Executive Officer, Alan Brownstein, is
quoted in the article, saying “Hepatitis C mirrors America. It affects bus drivers, construction
workers, even soccer moms.” This article emphasizes the fact that hepatitis C is non-discriminatory and can affect men, women and children without regard to race, age or lifestyle. For a
complete copy of the article, please contact the Chapter Office at 312.377.9030. Illinois Chapter Golf Classic
Tees Off July 8
Inside This Issue
Page 2
Run for Research
Nutrition
Page 3
Newly Diagnosed with HCV
Page 4
For Your Benefit
Between You and Your Liver
Page 5
Pediatric Knowledge
Fun for Kids
Volunteer Recognition
Page 6
Spring Benefit Pictures
Page 7
Spring Benefit Sponsors
Page 8
Resource Directory
Town Hall Meetings
Page 9
A Personal Note
Organ Donation
Page 10
Medical Corner
Medical Advisory Committee
Page 11
Membership Form
Donor Form
Insert
Clinical Trials
Support Groups
Mark Your Calendar
The Executive Steering Committee of the Fifth Annual Golf Classic would like to invite you to join
us at Harborside International
Golf Center on Monday, July 8th
Join Mike Greenberg of ESPN
for a great afternoon of golf.
Radio 1000 as he hosts the Golf
Mike Greenberg of ESPN RaClassic
dio 1000 is returning as emcee
of this 18 hole scramble which features a buffet lunch, raffle,
auction items, gifts, and prizes followed by a fabulous dinner
and awards ceremony.
Golf Classic Co-Chair Dan Weil commented, “the changes
we made to the event last year were very well received and we
have been able to attract new sponsors. One hundred percent
of last year’s sponsors have returned, and many have increased
their level of sponsorship.” Golf Classic Co-Chair Mike
Manuel is appreciative of our sponsors and is focusing on
maximizing revenues through the number of players. “One of
Continued on page 3
With an air of excitement filling the room, the eighth annual
Celebrating Life Spring Benefit Dinner was an occasion to remember. The evening began with a reception in the Crystal
Foyer of the Hyatt Regency Chicago, where guests whetted
their appetites with scrumptious appetizers and relaxed to the
smooth sounds of the Gene Garcia Trio. Also during the
reception, guests viewed and bid on the tables and tables of
unique silent auction items and caught a glimpse of the exciting
live auction items.
After the chime of the bell, the guests made their way to the
Crystal Ballroom where they dined on a delicious meal. Corey
McPherrin, Fox Sports News Anchor and evening emcee,
Continued on page 7
The American Liver Foundation - Illinois Chapter
27 East Monroe Street, Suite #700A Chicago, IL 60603
(312) 377-9030 (312)377-9035 (fax)
Email: [email protected] Website: www.illinois-liver.org
National Website: www.liverfoundation.org
National Hotline: 1-800-GO-LIVER (465-4837)
Celebrating Life A Success
Do More than Cross the Finish Line
We’re one-quarter of the way to our goal of 100 runners for the Run for Research Team of The 2002
LaSalle Bank Chicago Marathon!!! The dedication of the members of the Marathon Executive Steering Committee has resulted in a program designed to appeal to a runner’s sense of community while
pursuing a personal goal. The Committee is now focusing on recruiting - attending running events and
distributing literature to encourage runners to join us.
In addition to good exercise and participating in a worthwhile cause, our runners receive a
membership card which entitles them to discounts at the following retailers (all locations): Body ‘N
Sole, Dick Pond Athletics, Fleet Feet, Gazelle Sports, Kiddles, The Competitive Foot, Vertel’s,
New Balance, and Running Right Plus. CARA is offering a 10% training program discount to our runners as well.
The Illinois Chapter also offers great incentives for various fundraising levels, pre-paid or reimbursed marathon entry fee, a
training manual, fundraising tips, a Patient Partner Program and much, much more. “Committing to a charity provides one
more incentive for a runner to achieve his or her personal goal of competing in a marathon,” stated Executive Steering Committee Chair, David Brown. “We hope that the Run for Research Team will increase awareness of liver diseases and result in significant
funding for research.”
Contact the Chapter Office at 312/377.9030 or e-mail [email protected] to register as a runner for the Run for Research
Team in The 2002 LaSalle Bank Chicago Marathon, volunteer for the Health Expo in October, for more information about the
Patient Partner Program, or to contribute to the fundraising efforts of our runners.
*If you have already registered with The 2002 LaSalle Bank Chicago Marathon but would like to participate on
behalf of the ALF Illinois Chapter, we will refund your entrance fee and you will be entitled to all of the benefits we
provide. An Apple A Day... Nutrition for Your Liver
FDA Warns Kava May Harm Liver
The Illinois Chapter brings this recurring column for those of you interested in including natural remedies along with your physician-directed treatments.
Remember, as always, please discuss this information with your physician to find if the contents of this column are appropriate for you.
Kava, an herb used in dietary supplements and said to promote relaxation, may be linked to rare cases of severe liver injury, U.S.
regulators warned consumers. The Food and Drug Administration (FDA) said it had not yet determined whether kava was
responsible for liver damage but felt consumers should be aware of the potential risk. It had received a report of a previously
healthy young woman who required liver transplantation as well as several reports of liver-related injuries in people taking kava
products. Outside the United States, kava has been associated with 25 reports of liver-related injury, including hepatitis, cirrhosis
and liver failure, the FDA stated in its advisory to consumers. “The FDA will continue to investigate the relationship, if any,
between the use of dietary supplements containing kava and liver injury,” the FDA said, adding it would alert consumers if
necessary as more information becomes available. Patients who have liver problems, or who are taking drugs that can affect the
liver, should consult a physician before taking kava-containing supplements, the FDA said. Also, anyone taking kava should
contact a doctor if they experience possible signs of liver problems, such as yellowing of the skin or whites of the eyes or brown
urine. Other symptoms of liver disease can include nausea, vomiting, light-colored stools, tiredness, weakness, stomach or
abdominal pain and loss of appetite.
Countries including Germany, Switzerland, France, Canada and Britain have taken action on kava ranging from warnings to
removing kava products from the market. Industry groups representing dietary supplement makers did
not quarrel with the FDA’s advice, noting that several companies have included cautions about kava
use on their product packaging. The groups stressed, however, that the FDA had not ruled that
kava caused liver damage. “The jury is still definitely out,” said Robin Gellman, a spokeswoman
for the American Herbal Products Association, adding that “consumers need to read the FDA
advisory. That’s important information.” Kava, a plant found in South Pacific islands, is an
ingredient in dietary supplements promoted for a variety of uses, including relaxation and treatment of sleeplessness and symptoms of menopause. The FDA urged consumers and physicians to
report any cases of liver or other injuries that may be related to kava use. The FDA advisory can be
found on the agency’s Web site at http://www.cfsan.fda.gov/~dms/addskava.html. Page 2
“Golf” Continued
our primary goals this year is to increase
the number of golfers. Ideally we would
fill all of the 144 spots,” Mike stated.
“This is a great way for businesses to entertain clients or reward outstanding employees or an opportunity to have fun for
a good cause.”
Date: Monday, July 8, 2002
Registration/buffet lunch begins at
11:30am with a
shotgun start at 1:00pm.
Location: Harborside International
Golf Center, 11001 Doty Avenue
East, Chicago
We are grateful to our sponsors (listed
at right). They will receive recognition in
all pre- and post-event promotional materials and throughout the day of the
event.
It’s not too late to become a sponsor! If
you haven’t received your brochure and
reply envelope, or to register, please contact the Chapter Office at 312/377.9030.
Foursome: $1,000 / Single: $250 /
Dinner Only: $75 2002 Golf Classic Sponsorships*:
Promotional Sponsor:
ESPN Radio 1000
Ace ($5,000)
Brookfield Farms
Fujisawa Healthcare, Inc.
Roche Pharmaceuticals
Eagle ($3,000)
Goldberg, Kohn, Bell, Black,
Rosenbloom & Moritz, Ltd.
Kemper Insurance
LaSalle Bank
Mesirow Financial
Hole Sponsorship ($300)
Benj. E. Sherman & Sons, Inc.
Damer and Cartwright
Dutch Farms
Excel
Cathleen & Robert Healey
Integrity Marketing
Intermune
Regional Organ Bank of Illinois
Brad & Ginny Tips
Michael Uvena
Contest Prizes
Vulcan Golf
Lunch ($1,500)
Chicago Wolves
Beverage Cart ($1,000)
CDW Computer Centers, Inc.
Driving Range ($500)
Fulton Market Cold Storage Co.
*(current as of 5/28/02)
Just a glimpse of the
beautiful greens offered by
Harborside International
Golf Center
Illinois Offers Information for Newly Diagnosed
This program was developed for people who have been diagnosed with hepatitis C. The focus is to answer questions about this
virus, help patients develop a list of questions to ask their physician, provide diet/nutrition information, and offer a list of
qualified resources (websites, library materials, etc.) for patients to further their understanding of this disease. Attendees will be
referred to support groups in their respective areas.
This program is offered at no charge to the public through the generous sponsorship of Fujisawa Healthcare Inc. Preregistration would be appreciated. For further information or to pre-register contact
the Chapter Office at 312.377.9030 or email us at [email protected]. Newly Diagnosed with Hepatitis C Program Schedule*
Wednesday, June 26, 2002 (7:00-8:30pm)
Location: Loyola University Chicago, 820 N. Rush St., Marquette Center, Rm. 30, Chicago, IL
Facilitators: Mary Kozlowski, RN, & Marjan Siadat; University of Illinois at Chicago
Wednesday, July 31, 2002 (7:00-8:30pm)
Location: Fox Center-Oak Park Park District, 640 S. Oak Park Ave. (Jackson Blvd. & Oak Park Ave.), Oak Park, IL
Facilitators: Audrey Silver, RN & Bernadette Ulleweite, RN; Rush-Presbyterian-St. Luke’s Medical Center
Wednesday, August 28, 2002 (7:00-8:30pm)
Location: Marian Education Center, 1201 S. Main St., Crown Point, IN
Facilitators: Katie Wherity, RN & Dr. Helen Te; University of Chicago
Wednesday, September 25, 2002 (7:00-8:30pm)
Location: Wilmette Community Recreation Center, 3000 Glenview Rd. (Glenview Road and Skokie Blvd.), Wilmette, IL
Facilitators: Audrey Silver, RN & Bernadette Ulleweite, RN; Rush-Presbyterian-St. Luke’s Medical Center
Wednesday, October 30, 2002 (7:00-8:30pm)
Location: Glen Ellyn Public Library, 400 Duane St., Glen Ellyn, IL
Facilitator: Nancy Leone, RN; Loyola University Medical Center
*This program will not be presented during
November and December.
Page 3
For Your Benefit
Financial Information for Patients
Newly Diagnosed with Hepatitis C by Mike Ziegler
When someone is diagnosed with hepatitis C (HCV), dozens
of questions may run through his/her mind such as, “Will I
have to change my lifestyle due to HCV? What can be done to
treat HCV? Have I exposed my family to HCV?, What doctor
should I see to treat HCV?, etc…” It is important for your
peace of mind, general health, and the treatment of HCVto
receive answers to these questions. While addressing these questions, one must also look into the financial aspects of having
hepatitis C. Just as living with HCV may require you to change
your dietary habits, you also need to be prepared for
the changes in medical expenses associated with treating and living with HCV. Below are some financial
guidelines that patients with HCV should follow.
Assess Your Insurance Coverage: Many patients are aware that they have health insurance, but
are unaware of what is covered. To understand what
your HCV medical expenses will be, you should answer the
following questions: does your insurance plan cover hospitalization? (if yes, at what percentage?); does your insurance plan
cover physician office bills? (if yes, at what percentage?); does
your insurance plan cover labs & blood tests? (if yes, at what
percentage?); do you have coverage for oral prescription drugs?
(if yes, can you get prescriptions from local pharmacies and/
or mail order and what is your copayment per each
prescription?); do you have coverage for injectable drugs? (if
yes, can you get prescriptions from local pharmacies and/or mail
order and what is your copayment per each prescription?); what
is your health insurance deductible? (the annual amount you
must pay before your health insurance will begin covering your
medical expenses); and what is your out of pocket maximum?
(the total amount you need to pay annually for your medical expenses; in most cases, prescriptions do not apply to out of pocket
maximums).
Assess Your Expenses: Now that you have an understanding
of what is covered by your insurance company, you can begin to
assess how much you will need to spend on medical expenses.
It is important to plan and budget how you will handle your
medical expenses; try to anticipate how much you will need to
spend on a monthly basis.
Assess Programs to Lessen Your Medical Expenses:
Upon assessing their insurance coverage & medical expenses,
some patients find that they do not have the financial resources
available to receive treatment for HCV. There are options available for these patients. Such as:
Investigational Studies. Many Hepatologists can enroll patients in investigational studies which, often times,
provide patients with treatment options that are similar
or more advanced than the standard HCV treatments.
Many studies cover the physician office visits, labs, tests,
and the cost of medication. Therefore, the cost to the
patient is greatly reduced. (See the insert for a partial list of
Chicagoland studies.)
Manufacturer Assistance Programs. Some patients have coverage for hospitalization and physician bills, but do not have
prescription coverage. Therefore, they cannot afford the HCV
treatments. All of the manufacturers of HCV medications
have assistance programs for patients without prescription coverage.
Other Available Assistance Programs. There may be other
government or community programs available to patients who
cannot afford healthcare. These programs depend on income,
where you live, and several other factors. If you would like to
see if you qualify for any additional programs, please contact
the Illinois Chapter. They will put you in touch with people
who can help identify program eligibility.
Mike Ziegler is a partner at Damer & Cartwright Pharmacy. He has
10 years of experience in helping patients handle financial issues that
pertain to healthcare and reimbursements of prescription medications. Between You and Your Liver
This column serves to answer many common inquiries we receive over the phone or questions that you send in to us.
Q: I would like to make a larger contribution to the ALF - Illinois Chapter, but cannot do so at this time. Is
there any way to increase the value of my donation?
Many corporations provide a multitude of benefits to their
employees, one of which may be a corporate match on donations. The corporate match offers employees the opportunity
to determine how a portion of the corporation’s charitable
giving dollars will be spent. This benefit allows employees to
donate to their charity (or charities) of choice and, with minimal paperwork, the corporation supports the employees’ charities by matching the dollar amount contributed by the employee - some times up to three times the amount of the gift!
Page 4
We suggest that you review your employee benefit handbook or contact your human resources department to find out
if your employer has a program of this nature. Program guidelines vary according to what works best for each corporation,
so pay close attention to the guidelines. Often times there are
annual limits for these types of gifts, quarterly distributions, or
other deadlines.
This is an easy way for you to increase your donation and
allow your employer to help you do so!
Pediatric Knowledge
Biliary Disfunction for Severe Itching and
Xanthomas in Alagille Syndrome by Karan Emerick, MD
The Illinois Chapter brings you this column in an effort to help you help your children cope with liver diseases. We also include something fun, such as the
clay recipe below. This issue’s story is the second of a three-part series. The following details results from a study involving AGS patients and PEBD
(Partial External Biliary Diversion). Part III will provide answers to some frequently asked questions about PEBD.
Between the years of 1985 and 2001, nine AGS
patients who failed medical therapy underwent
PEBD. The average age was 4.8 years (the
youngest patient was 1.4 years old and the oldest was 10 years old). The average duration of
follow-up was 7.5 years (the shortest was 0.5
years and the longest was 16.0 years). Patients
with cirrhosis on liver biopsy or evidence of a failing liver (fluid
accumulated in the abdomen - ascites), blood that won’t clot
despite vitamin K, or enlarged blood vessels in the gastrointestinal system called varices, were not considered candidates for
the procedure.
Pruritus was measured on a scale of 0 to 4 where: 0=none,
1=mild scratching when undistracted, 2=active scratching without skin injury, 3=scratching until skin injury, and 4=mutilation
of skin with bleeding and scarring due to scratching.
All nine AGS patients had severe, mutilating pruritus (grade 4
itching) prior to diversion. One year after PEBD the average
pruritus score was 1.1; eight patients had only minor scratching
when undistracted. Three patients with extensive xanthomas
prior to PEBD had complete resolution within one year. Mean
serum bile salt levels in five patients decreased from 136.5 to
37.1 µM/L (normal is less than 10 µM/L) and mean cholesterol in patients decreased from 724 and 367 mg/dl (normal is
less than 200 mg/dl) one year after PEBD. A single 21-yearold patient with PEBD for 14 years experienced an increase in
pruritus from grade 1 to grade 4 within 2 months of choosing
to reverse the PEBD. This data supports that PEBD is effective for treating severe pruritus and hypercholesterolemia in AGS
patients without cirrhosis who did not respond to medical
therapy. PEBD should be considered as a therapeutic option
for these patients prior to referral for liver transplantation.
Karen M. Emerick, MD is the Assistant Professor of Pediatrics at
Children’s Memorial Hospital. Rainy Day Fun Homemade Colorful Clay
It’s time to take a break! The following is a simple, fun recipe for
homemade clay. Kids love to play with modeling clay—whether they’re
sculpting it, pounding it, or throwing it. Replenish their supply with this
colorful clay that’s fun to make!
Ingredients
1 cup flour
1/2 cup salt
2 teaspoons cream of tartar
1 teaspoon cooking oil
food coloring
In a heavy saucepan, combine flour, salt, and cream of tartar.
Add oil, 1 cup water, and food coloring as desired. Cook over
medium heat for 3 minutes, stirring constantly, until mixture
pulls away from sides of pan. Remove from heat, and let cool
1 minute. Transfer to a work surface, and knead until smooth.
Store in an airtight container; it will keep for several weeks.
Note: This clay is not for children under 1 year of age; due to its high
salt content, children should be discouraged from consuming. With A Little Help From Our Friends...
A special shout to John Norton for helping us update our medical professionals database, to Brad
Stanley for his constant work on our website and for videotaping at the Chicago Town Hall Meeting
and Spring Benefit, Tom Dominguez for his assistance during the Chicago Town Hall Meeting,
and Anne and Randy Jeskey, who volunteered their efforts and spoke to guests at the Living with
Transplantation Conference. Anne also volunteered her time in the Chapter Office, helping us prepare
for events (see her story on page 9).
Volunteer efforts are vital to the success of the Spring Benefit, and this year our volunteers really made a difference! Thanks to
Co-Chairmen: Audrey Silver and Patty Devine; Silent Auction Chair: Sherry Schmitter Block, and members/evening volunteers:
Donna Arnieri, Vicky Bell, Kathleen M. Boege, Barbara Christian, Joan Conway, Merle Cooper, Jacqueline A.
Dominguez, Tom Dominguez, Jean Fitzpatrick, Krista M. Flanagan, Cindy Gonzales, Mary Harless, Catheleen
Kahn Healey, Diane Jacobson, Celeste Jensen, Nancy Leone, Heidi Litwin, Lisa Lubelchek, Lanie H. Mueller,
Libby Reinkall, JoAnn Sandstrom, Carolyn Smeltzer, Brad Stanley, Liz Weil, and Katie Wherity. A Special thanks also to
our Principal Sponsor Roche Pharmaceuticals and Heidi Litwin for making the sponsorship a reality. Thank you to American
Airlines for continuing to be the official Airline Sponsor of the Illinois Chapter’s Spring Benefit. To all friends of the Illinois
Chapter, we applaud your talents and efforts! Page 5
Photos to the left (clockwise from top): Emcee Corey
McPherrin and Chapter Director Jacqueline
Dominguez smile for the camera; ALF National
Vice President of Field Services Joe Kleiber (left)
and Chapter President David Sherman (right) talk
with Mr. and Mrs. James Curtin; the crowd
continues to grow during the reception; Board
Members Catheleen Kahn Healey and Daniel
Weil relax during the evening’s festivities; Anne
and Randy Jeskey take a break from previewing
the silent auction; and Heidi Litwin, Roche, enjoys good company for a good cause.
Photos to the right: (from top): Just one of the many beautiful tables in the Crystal Ballroom; Audrey Silver, Benefit CoChair and David Sherman, Chapter President, draw raffle
prizes; the live auction gets kicked up a notch with the energetic Paul Rogers; Chapter Director Jacqueline Dominguez
greets Community Service Honoree Jarold Anderson, his wife
Priscilla (left) and Alison Smith of ROBI ; Marjorie
(“Maggie”) Lang gives special thanks when accepting the
Youth Recognition Award; Dr. Jay Goldstein (right) brings
warmth and humor to the program when introducing Dr. Thomas J. Layden as the Physician Recognition Award recipient.
Photos to the left: (clockwise from top): Board member Dennis Gleason and his wife Karen are tempted by the many
unique silent auction items; the silent auction included many
items, even those for the hockey fanatic!; one member of the
trio, Gene Garcia tickles the ivories to enhance the ambiance;
bidders and onlookers try to choose between auction items;
Board Member Liz Weil (left) and Lynne Weil bring a touch
of Spring home, courtesy of florist Beth Weibel.
Page 6
“Benefit” Continued
welcomed the guests and introduced Joe Kleiber, ALF National
Vice President, Field Services, who thanked guests for their support. Reverend Stan J. Sloan then shared his warm thoughts.
Immediately following dessert, the awards presentation began
with Dr. Peter Whitington introducing Marjorie (“Maggie”)
Lang, 2002 Youth Recognition Award recipient, who returned
with a heartfelt speech of gratitude. Dr. J. Michael Millis then
took the stage as he introduced the 2002 Community Service
Award Recipient Jarold Anderson, President and CEO of the
Regional Organ Bank of Illinois (ROBI), and spoke of his leadership in organ donor initiatives in Illinois and Northwest Indiana. Mr. Anderson humbly accepted this award and spoke of
the importance of organ donation and the teamwork of the
ROBI organization. Lastly, but certainly not least, Dr. Jay
Goldstein, colleague and friend, introduced Dr. Thomas J.
Layden as the 2002 Physician Recognition Award recipient. Dr.
Layden, who was honored that evening for his brilliant research
in hepatitis C viral kinetics, thanked his friend and spoke about
his dedication to liver research.
The evening then took on a lighter tone as Corey McPherrin
and Paul Rogers, Benj. E. Sherman & Sons, sparked enthusiastic and entertaining live auction bidding. The successful bidders of the evening were Patty Devine (first class air transportation to Hawaii provided by American Airlines and a threenight stay at the Moana Surfrider on Waikiki Beach), Dennis
Gleason (an official autographed Frank Thomas jersey and
tickets to the White Sox), Dr. Donald Jensen (Cross-town
tickets), Bill Wolf (an autographed Sammy Sosa baseball), Dr.
Bruce Silver (an autographed Dale Chihuly book), and
Catherine McIsaac (a three-month lease on a Vespa scooter).
The raffle winners, drawn by Audrey Silver (Celebrating Life
Co-Chair), Heidi Litwin (Roche Pharmaceuticals), and Theresa
Bonomi (representing West Suburban Auto Group), respectively,
were: “Planes” – two main cabin tickets to the Caribbean, courtesy of American Airlines, won by Mr. and Mrs. Mark J.
Putterman, “Change” - $2,002 in cash won by Theresa Storino,
and “Automobile” – a one-year lease on a Volkswagen Beetle
won by Greg Mann.
Final thoughts of the evening were of pure gratitude by
Cathleen Kahn Healey, Vice-President and Co-Founder of
the Illinois Chapter and of positivity by David Sherman, Chapter President.
With record-breaking attendance, true spirit of camaraderie,
and all profits going to research and education for liver diseases and organ donor awareness, the eighth annual Celebrating
Life Spring Benefit dinner can only be described as a success!
The Illinois Chapter would like to extend a special thank you
to Cathy Dunn and Rebecca Stern of the Catering Office at
the Hyatt Regency Chicago. Their dedication to our event helped
to create the joyous atmosphere and seamless presentation.
Please see “With a Little Help From our Friends” on page 5
for a list of the volunteers, and sponsors to the right, who
helped make the night so special. The Illinois Chapter extends its deep gratitude to the friends
and contributors whose generous financial support has guaranteed the success of the 2002 Spring Benefit.
Principal Sponsor
Roche Pharmaceuticals
Associate Sponsors
Blue Cross Blue Shield of Illinois, Fujisawa Healthcare,
R.R. Donnelley & Sons Company, USG Corporation,
Walgreen Company
Supporters
Richard Barkan, Benj. E. Sherman & Sons, Inc., Sherry
Schmitter Block and Frank J. Uvena, Brookfield Farms,
Chicago Federation of Labor AFL-CIO, Children’s Memorial
Hospital - The Siragusa Transplantation Center, Damer and
Cartwright Pharmacy, Dann Insurance, Fujisawa Healthcare*,
Hackberry Endowment Partners, Catheleen and Robert
Healey, LaSalle Bank, Thomas J. Layden, MD,
Much, Shelist, Freed, Denenberg, Ament & Rubenstein, P.C.,
Northwestern Memorial Hospital - Kovler Organ Transplantation Center, Northwestern Memorial Hospital Liver Transplant Department/Novartis, Northwestern University Medical School - Division of Gastroenterology and
Hepatology, Northwestern University Affiliated
Transplant Centers, PricewaterhouseCoopers LLP, Pritzker
Foundation, Sunnie Kahn Olson, Rush-Presbyterian-St.
Luke’s Medical Center-Division of Digestive Disease, Section
of Hepatology, Rush-Presbyterian-St. Luke’s Medical CenterTransplant Program/Fujisawa Healthcare, Schering Corporation, The ServiceMaster Company, Bruce and Audrey Silver,
Jack and Nancy Schwemm, Teamsters Joint Council # 25,
University of Chicago Transplant Program/Fujisawa
Healthcare, University of Illinois at Chicago Medical Center Division of Transplant Surgery/Fujisawa Healthcare, University of Illinois Medical Center Hospital Administration,
University of Illinois at Chicago-Section of Digestive and
Liver Diseases, Vedder, Price, Kauffman & Kammholz/
Mr. and Mrs. Paul O’Kelly, William Blair & Company
*Three Tables
Patrons
Mr. and Mrs. Frederic Brace, Jr., Lyle Campbell, Caremark
Therapeutic Services, Chicago Special Events Management,
Deloitte & Touche, The Donnelley Foundation,
Steven and Carol Felsenthal, Italian Village Restaurant/
Mr. and Mrs. Ray Capitanini, Marshall and Charlene Lavin,
Arnold H. Kahn, Peter O’Brien, Pearsall Family Foundation,
Dr. Kesevan & Dr. Shakuntala Rajopal, Rootberg Business
Services, Inc., Lee and Nancy Rosenberg,
Sacks Family Foundation, Diane and Leonard Sherman,
Richard G. Weinberg
Page 7
Your Liver Resource Directory
American Liver Foundation Headquarters
75 Maiden Lane #603 New York, NY 10038-4810
Ph: 212/668.1000 Fax: 212/483.8179
http://www.liverfoundation.org
Americans with Disabilities Act Information
U.S. Department of Justice Civil Rights Division - Disability
Rights Section P.O. Box 66738 Washington, DC 20035-6738
Ph: 800/514.0301 Fax: 202/307.1198
http://www.usdoj.gov/crt/ada/adahom1.htm
Asian and Pacific Islander American Health Forum
942 Market St., #200 San Francisco, CA 94102
Ph: 415/954.9988 Fax: 415/954.9999
Email: [email protected] http://www.apiahf.org
Medicare Hotline Ph: 800/638.6833
National Insurance Consumer Hotline Ph: 800/942.4242
National Digestive Diseases Info Clearinghouse
2 Information Way Bethesda, MD 20892-3570
Ph: 301/654.3810 Fax: 301/907.8906
Email: [email protected] http://www.niddk.nih.gov
National Foundation for Infectious Diseases
4733 Bethesda Ave. Suite 750 Bethesda, MD 20814
Ph: 301/656.0003 Fax: 301/907.0878 http://www.nfid.org
National Institute of Health
9000 Rock Pike Bethesda, MD 20892
Ph: 301/496.1776 http://www.nih.gov
Social Security Administration
Ph: 800/772.1213 http://www.ssa.gov
Centers for Disease Control & Prevention
Hepatitis Branch: Mailstop G-37
1600 Clifton Rd. NE Atlanta, GA 30333
Ph: 404/639.2339 http://www.cdc.gov
Illinois Coalition on Donation
Ph: 888/3.07.3668
Immunization Action Coalition
1573 Selby Ave. #234 St. Paul, MN
55104 Ph: 651/647.9009
Fax: 651/647.9131
Email: [email protected]
http://www.immunize.org
Chat Room
If you are interested in joining an
on-line chat room regarding liver
health, please send an email to
[email protected]
PBC Town Hall
Meeting Will Be
Open to Public
The American Liver Foundation-Illinois Chapter is offering an
educational health program on Primary Biliary Cirrhosis. This
chronic liver disease causes slow, progressive destruction of
the bile ducts in the liver. This destruction interferes with the
excretion of bile. Continued liver inflammation causes scarring and eventually leads to cirrhosis.
Attendees will learn more about this disease, including treatments and advancements in research. This program features
presentations by medical professionals from Loyola University, Northwestern Memorial Hospital, Rush-Presbyterian-St.
Luke’s Medical Center, University of Chicago, and University
of Illinois at Chicago.
June 29, 2002: 8:00am-12:30pm
Wyndham Garden Hotel Schaumburg
800 National Parkway Schaumburg, IL
This program is generously sponsored by AXCAN
SCANDIPHARM INC. There is no registration fee. Seating
is limited so pre-registration is required. Please contact the
Chapter Office for your reservation at 312/377.9030. Page 8
United Network for Organ Sharing
1100 Boulders Pkwy, Suite 500 P.O. Box
13770 Richmond, VA 23225-8770
Patient/Public Info. Ph: 888/TXINFO1
http://www.unos.org
Springfield Educates Public
on Hepatitis C
On behalf of the Illinois Chapter, Don
Hunt of the Springfield Department
of Public Health coordinated the first public educational forum on hepatitis C on Saturday, May 18th, in the Springfield
area. Don volunteers for the Illinois Chapter as a hepatitis C
Support Group Facilitator and was inspired by the success we
experienced in downtown Chicago with our first Town Hall
Meeting, Understanding Hepatitis C, earlier this year.
Over 50 people attended the Springfield Town Hall Meeting
and benefited from the expertise of Dr. Robert Ewart, Southern Illinois University; Dr. Janak Koirala, Southern Illinois University; Dr. Donald Graham, Infectious Diseases and Foreign
Travel Medicine Specialist; Dr. Nancy Khardori, Southern Illinois University; and Richard Zimmerman, Program Coordinator for the Counseling and Testing Program at the Illinois
Department of Public Health (IDPH).
Don hopes to plan similar programs in the future. Please
join us in thanking him for recognizing the value of this type of
educational outreach and taking the initiative to make it a reality.
We would also like to thank the medical professionals who
volunteered their time and Schering Plough for their
generous sponsorship. On a Personal Note
by: Anne Jeskey
We bring you this column as a way for you to share your story. Also, it
is a way for you to learn from others. If you have a story you would like
to tell, please contact the Chapter Office. All submissions are subject to
approval and editing.
In addition to being a new member of
American Liver Foundation, I also volunteer from time to time in the Illinois Chapter office. I was diagnosed with hepatocellular carcinoma in July, 2000, at age 52.
My case was quite advanced by the time I
was diagnosed. I had a large grapefruitsized tumor on my liver and was lucky enough to find a heroic
surgeon, Dr. Alexander Doolas, at Rush-Presbyterian-St. Luke’s
Medical Center, who immediately performed a left lobe liver
resection for me. Later I learned that I had more small inoperable tumors than the technicians could count remaining in my
liver. I researched primary liver cancer on the Internet and
learned that liver cancer that originates in the liver is very rare
and comes with a lower prognosis. Put briefly, I concluded that
the less common a disease is, the less focus of attention and
dollars are directed at its cure. Internet research indicated limited success with relatively new treatments called chemo embolization and radio frequency ablation. One treatment had somewhat increased success when the embolizations and/or ablations
were combined with regular chemo. Chemo embolization is
similar to an angiogram. The radiologist enters the liver through
a main artery in the groin and is able to inject chemo directly
into the liver and block off the blood sources that feed the tumors. For the ablation, a radiologist inserts a prong directly
into the liver and radio frequencies are used to burn away tumors.
I was the Administrator of the State of Illinois’ Child Support Enforcement Program in Cook County at the time of my
diagnosis. Although I returned to work after my initial surgery,
I decided to take a leave of absence and fight. My goal is to
do whatever I can to stay alive and help during the time it takes
researchers to come up with a cure. And, I am significantly
motivated by my desire to fight for quality time with my husband Randy and my two sons, Doug (20) and Nick (18), all
of whom I adore.
Since September, 2000, I have undergone seven chemo
embolizations, one radio frequency ablation and three kinds of
intravenous chemotherapy, with very good results. I have also
researched and participated in several complimentary treatments,
including Chinese herbs, visualization and meditation. So far, I
have experienced three periods of “no cancer activity”, which
I view as miracles considering my original condition. I continue my battle as necessary and am so thankful for how resilient my liver has been. The best part is that I’ve been able to
enjoy life and my family and friends in between treatments.
There has even been time and energy for things like volunteer-
Organ Donation Activities
Prominent in Illinois
As part of the Illinois Coalition on Donation, the ALF Illinois Chapter joined hundreds of volunteers and healthcare
professionals throughout Illinois and Northwest Indiana in commemorating National Organ and Tissue Donor Awareness
Week (April 21-27). Hundreds of donor awareness programs
took place throughout Illinois. A few highlights include: a Celebrity Basketball Challenge; a campaign on CTA rail and bus
lines; a massive green ribbon displayed on the James R. Thompson Center building; tree planting ceremonies in Naperville
and Peoria; a Candlelight Bowl; a memorial walk in Urbana;
tray liners at Hardees’ restaurants in Springfield; an essay and
poem contest in McLean County; a green ribbon campaign in
Rockford; displays in over 200 7-Eleven stores; and employee
informational campaigns with the Chicago Fire and Police Departments.
Additionally, theaters, television, and radio began running a
commercial, developed by the Illinois Secretary of State’s Organ/Tissue Donor Program, featuring liver transplant recipient
and Olympic snowboarding bronze medalist Chris Klug. Klug,
who suffered from the same disease as Chicago Bear Walter
Payton, received a liver transplant in July, 2000 and then became the only organ recipient to ever compete in the Olympics.
The commercial also features U2’s “Beautiful Day”; the band
generously donated the rights to their song for this worthy cause.
The National Kidney Foundation of Illinois (NKFI)
hosted the annual Living with Transplantation conference on
Saturday, April 13. This event educated approximately 350
transplant recipients and candidates on various issues concerning adult and pediatric transplantation. Session topics ranged
from pre- and post-transplantation medical needs to spiritual
needs to “Frontiers in Transplantation”. Congratulations to
Rondi Wightman of NKFI for organizing another educational and successful event.
The ALF Illinois Chapter is honored to partner with local
organizations to make these organ donor initiatives a reality
and reach thousands more potential donors. ing and pursuing some of my artistic and decorating interests,
things I never had time for before.
I sought out ALF as part of my desire to do what I can to
encourage focus and resources on primary liver diseases. I was
always worried that I’d get breast cancer and so I volunteered
quite a bit in the past for those events. It’s too bad that I had to
get liver cancer to learn that the liver and its diseases need
everyone’s focus, too. When I contacted ALF, I was heartened
to hear about our organization’s increased focus on hepatocellular carcinoma. I believe that any progress made in the treatment of liver diseases and cancer of all kinds is progress for all
of us. The interest in making headway with liver disease is
building and the sum of whatever small effort each of us can
make will get us all closer to our individual and worldwide
health goals. Page 9
Medical Corner
Nonalcoholic Steatohepatitis (NASH)
Our Medical Corner column provides current
information concerning liver health, research, and
treatments.
Nonalcoholic steatohepatitis (NASH) is a
common, potentially serious liver condition, described as inflammation of the liver
associated with the accumulation of fat in
the liver. The fatty tissue in the liver may
break up liver cells (steatonecrosis) and the
patient may develop cirrhosis (scarring of the liver). It differs
from simple accumulation of fat in the liver (NAFL) in that the
inflammation causes damage to the liver cells while simple fatty
liver probably does not.
NASH is not connected with other causes of chronic liver
disease. It may be associated with various risk factors such as
obesity, diabetes, or elevated lipids, which should be controlled.
It has also been connected with rapid weight loss, or in women
taking hormones (estrogen). Many patients with NASH will
show an increase of certain iron proteins (ferritin) in their blood
and slight increase of liver enzymes tests, but whether this relates to an injury of the liver is unknown.
Many NASH patients are unaware of their condition because they do not exhibit any symptoms. As with fatty liver, the
physician will first eliminate the other possible causes of chronic
liver disease. Images of the liver are obtained by an ultrasound
test, a CT scan, or an MRI scan. The diagnosis must be confirmed by liver biopsy. At present, there is no standard treatment that is universally agreed upon. Many drugs are now
being studied for potential medical therapy. Patients who are
obese, diabetic, and have high lipids (fats) in their blood are
advised to lose weight and control their diabetes and elevated
lipids. Usually, a low-fat, low-calorie diet is recommended along
with insulin or medications to lower blood sugar for diabetes.
For patients with NASH who are not overweight and not diabetic, a low-fat diet is often recommended. Patients with NASH
should avoid alcohol or other substances which could be harmful to the liver. More research is needed to understand exactly
what causes NASH so that more effective therapies can be
developed. The Illinois Chapter Presents
the 2002/2004 Medical
Advisory Committee
Each chapter of the American Liver Foundation invites the
medical community to form a Medical Advisory Committee
(MAC) to offer guidance and direction to the chapter in areas
regarding medical issues. It’s important to have the input of
the medical experts when considering public/professional education programs, providing information associated with research study outcomes, raising awareness, and even fundraising
events.
MAC membership is voluntary with a two year renewable
term. In 2002, term limits expired for many of the Illinois
Chapter’s MAC members and, while regretfully we accepted
resignations from some, the new term provided us with an
opportunity to invite new members to join us. We are excited
about this team of 19 medical professionals who represent
various liver centers throughout the state of Illinois. (See the
back panel of this issue of LIFE for a complete listing of
MAC members and the centers they represent.)
Dr. David Cronin, Chair of the Illinois Chapter’s Medical
Advisory Committee, recently called the first meeting of 2002
to order. The meeting was well attended and provided the opportunity for members to meet each other and discuss common
concerns. Topics such as newsletter articles, increasing chapter
membership, and the feasibility of another symposium for medical professionals were among the items
discussed.
The Medical Advisory Committee will
meet quarterly and sub-committees will
develop a schedule of meetings for specific projects. The Board of Directors
and the Chapter Staff appreciate the
support of the medical community.
Their volunteer efforts play a significant
role in our success and we are appreciative of their support.
The meeting was sponsored by Fujisawa Healthcare, Inc.
Please note: The contents of this newsletter are for informational purposes only. It does not constitute medical advice, and should not be
relied upon as such, as ALF does not engage in the practice of medicine. ALF, under no circumstances, recommends particular treatments
for specific individuals, and in all cases recommends that you consult your physician before pursuing any course of treatment. Additionally,
all educational meetings are for informational purposes only. The Illinois Chapter does not recommend or endorse treatments, products, or
services.
LIFE (Liver Information for Everyone) is an informational newsletter published for members of the Illinois Chapter.
Editor: Jacqueline A. Dominguez
Co-Editor: Krista M. Flanagan
Page 10
A Truly
Special
Gift...
Making a donation to the American Liver Foundation can be a
wonderful tribute to someone special. It is a thoughtful way to
recognize someone on special occasions, such as a birthday,
anniversary or holiday. These gifts are a gratifying way to honor
someone while supporting ALF’s efforts to prevent, treat, and
cure liver diseases. Also, donating in memory of someone shows
sentiment to his/her family and loved ones.
When a donation is sent as a memorial or tribute, an acknowledgment is sent as specified. The amount of the gift is not
indicated. Every gift is tax deductible and the donor receives
proper documentation.
Please make checks payable to:
American Liver Foundation - Illinois Chapter
Special Gift
In memory of:
In honor of:
On the occasion of:
Make A Difference...
Become a Member
One in ten Americans are affected with liver disease. Become a member of the American Liver Foundation and you will receive important information including National and Chapter newsletters, research
updates, and meeting notices. You’ll also be a part of a nationwide
force of patients, healthcare leaders, scientists, and other concerned
people who can speak as a unified voice. Your tax deductible membership will help fund research, education programs, and organ donation
awareness activities.
Name
Address
City
State
Zip
Phone and Contact Information:
Work
Home
Fax
Email
Send the appropriate acknowledgment to:
Name
Address
City
State
Zip
I would like to volunteer with:
Send my receipt to:
Name
Address
City
Phone
Enclosed is my annual fee of $25
$15
check
support groups
helping at the office
community education fund raising
check
State
Zip
Credit Card #
$25
$50 Other $
Visa MasterCard AMEX
Credit Card #
Visa MasterCard AMEX
Exp. Date
Name as it appears on card:
(please print)
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(please print)
Signature
Signature
Return to:
American Liver Foundation - Illinois Chapter
27 E. Monroe St. Suite 700A
Chicago, IL 60603
Please return this form to the Chapter Office.
Thanks for joining us in the fight against liver disease and raising
organ donor awareness!
Page 11
Board of Directors
David A. Sherman, President
Catheleen Kahn Healey, Vice President
Kathleen M. Boege, Treasurer
Patty Devine, Secretary
Directors
Hon. George H. Ryan
Hon. Jesse White
Chari Aweidah
Andres T. Blei, MD
David Cronin, MD
Dennis F. Gleason
Donald M. Jensen, MD
Thomas J. Layden, MD
Doug Lubelchek
Michael B. Manuel
27 East Monroe Street #700A
Chicago, IL 60603
(312) 377-9030
Non-Profit
Organization
U.S. Postage
PAID
Permit No. 5274
Chicago, IL
J. Michael Millis, MD
Audrey I. Silver, RN
Carolyn Smeltzer, RN, EdD
Frank J. Uvena
Charles R. Walgreen, III
Daniel E. Weil
Elizabeth M. Weil
Peter F. Whitington, MD
Hank Zemola
Medical Advisory Committee
Chair - David Cronin, MD
University of Chicago Hospitals
John Brems, MD
Loyola University Medical Center
Scott Cotler, MD
Rush-Presbyterian-St. Luke’s Medical Center
Amanda DeVoss, PA-C
Rush-Presbyterian-St. Luke’s Medical Center
Mary Harless, RN
Northwestern Memorial Hospital
Steven Flamm, MD
Northwestern Memorial Hospital
Daniel Ganger, MD
DuPage Medical Group
Donna Goldman, MD
Northwest Gastroenterologists
Donald Jensen, MD
Rush-Presbyterian-St. Luke’s Medical Center
Alan Koffron, MD
Northwestern Memorial Hospital
Mary Kozlowski, RN
University of Illinois at Chicago Medical Center
Nancy Leone, RN
Loyola University Medical Center
J. Michael Millis, MD
University of Chicago Hospitals
Kathleen Shortridge
University of Chicago Hospitals
Giuliano Testa, MD
University of Illinois at Chicago Medical Center
David Van Thiel, MD
Loyola University Medical Center
Thelma Wiley, MD
University of Illinois at Chicago Medical Center
James Williams, MD
University of Chicago Hospitals
Rockford J. Yapp, MD
Advocate Good Samaritan Hospital
Give a Liver. Save a Life.
The printing of LIFE is made possible through a grant
from Roche Pharmaceuticals. The ALF Illinois Chapter
would like to express gratitude for their assistance in carrying
out our mission.
Illinois Chapter Staff
Jacqueline A. Dominguez, Chapter Director
Krista M. Flanagan, Community Events Coordinator
Linda S. Ruhe, M.A., Education/Support Group Coordinator
Lanie H. Mueller, Administrative Professional
Mission Statement:
The American Liver Foundation (ALF) is a national voluntary health
organization dedicated to preventing, treating, and curing hepatitis and
other liver diseases through research, education and advocacy.
Support Groups Sponsored by the
Illinois Chapter of the American Liver Foundation
Many who are afflicted with liver diseases feel they are alone. Our patient and family support groups are designed to provide an opportunity for
liver disease sufferers and their families to discuss issues, share information and learn more about their illness and treatments in a positive
environment. If you have any questions or would be interested in a support group in your area, please contact Linda S. Ruhe, Education/
Support Group Coordinator, at 630/585.7660.
Naperville
Location: St. Mary’s Hospital
Hepatitis C
Day:
2nd Tuesday of Each Month
111 Spring Street, North
Arlington Heights
Time:
7:00p.m. to 8:30p.m.
Assembly Hall Lower Level
Day:
1st Monday of Each Month
Contact: JoAnne Sandstrom,
PBC
Time:
7:00p.m. to 9:00p.m.
630/434-9312
Contact: Linda Ruhe, c/o Cathy
Contact: Ivette Williams, 773/779.7602
Orland Park
Batdorf, 630/585.7660
Day:
Varies per month
Location: Northwest Community
Time:
7:00p.m. to 8:30p.m.
Healthcare, Room 1-6
June 25th - June 29th, 2002 - The Olympics
Contact: Laura Salzman,
may be over, but the U.S. Transplant Games
Aurora
708/403.4001, Ext. 222
are about to begin! Courtesy of the National
Day:
Varies, Please call for details
Location: Orland Township Building
Kidney Foundation, the games will be held
Time:
7:00p.m. to 9:00p.m.
15100 S. 94th Avenue
at Disney’s Wide World of Sports. If you would
Contact: Linda Ruhe, 630/585.7660
like to participate or attend, contact the ChapRockford
Chicago/Downtown
ter Office at 312/377.9030
Day:
3rd Thurs. of Each Month
Day:
1st Tuesday of Each Month
Time:
6:45p.m. to 9:00p.m.
Monday, July 8, 2002 - Mike Greenberg,
Time:
7:00 p.m. to 9:00 p.m.
Contact: Brenda Erwin, 815/391-5100
ESPN AM 1000, is joining us again at
Contact: Linda Ruhe, 630/585.7660
Location on Odd Months: Harlem
Harborside International Golf Course for the
Location: Northwestern Memorial
United Methodist Church
Fifth Annual Golf Classic. This championHospital, 251 E. Huron,
8401 North Alpine Road
ship golf facility provides a perfect setting for
Galter Pavillion , Rm. 7-302
Location on Even Months: Brooke
a great day of golf, great food by Stefani’s, and
(Participants do not need to be affiliated
you’ll have the chance to win some fabulous
Road United Methodist
with Northwestern.)
prizes and meet local celebrities like Mike!
Church, 1404 Brooke Road
Crystal Lake (formerly Woodstock)
Sunday, October 13, 2002 - 2002 marks the
Springfield
Day:
3rd Friday of Each Month
25th anniversary of The LaSalle Bank ChiDay:
3rd Monday of each Month
Time:
6:00p.m. to 8:00p.m.
cago Marathon. We’re excited about being a
Time:
7:00p.m. to 9:00 p.m.
member of their Charity Partner Program.
Contact: Betty Kersting, 815/943.3597
Contact: Don Hunt,
We’ve established a Marathon Executive SteerLocation: 824 S. Main Street, Ste #206
217/789.2182, Ext. 111
ing Committee and have set some aggressive
Location: Springfield Department of
Elmwood Park
goals – 100 runners to raise $100,000. Can
Public Health,
Day:
3rd Thurs. of Each Month
we do it?? Sure, with your help. Remind your
1415 East Jefferson,
Time:
7:30p.m. to 9:00p.m.
runner friends that running for a charity enMain Floor Conf. Room
Contact: Norm Seiff, 708/453.2206
riches the running experience and have them
Location: Park and Recreation Building
call the Chapter Office for details.
Spring Valley
2 Conti Parkway
Day:
Last Thurs. of Each Month
Saturday, October 19, 2002 - Andy Shaw
Time:
7:00p.m. to 8:30p.m.
Lindenhurst
from ABC 7 invites you to join us on Chicago’s
Contact: Mary Sue Goldsmith,
lakefront for the fourth consecutive year to
Day:
4th Monday of Each Month
815/872.3503
take strides against liver diseases. New this
Time:
7:00p.m. to 9:00p.m.
Location: St. Margaret’s Hospital
year, we are adding the option to run or walk
Contact: Linda Ruhe, 630/585.7660
the 5K course. It’s never too early to start colPresentation Rm, 600 1st St.
Location: Victory Lakes Continuing
lecting pledges and forming your team to raise
Care Chapel Rm, 1055
Sterling
money for research, education and advocacy
Grand Ave.
Day:
1st Wed. of Each Month
for liver diseases. There’ll be food, fun, and
Time:
5:00 p.m. to 6:30 p.m.
Maywood
entertainment for the entire family, including
Contact: Joan Saunders, 815/626.2230
pet stations for the four-legged members.
Day:
1st Monday of Each Month
st
Street
Location:
United
Way,
502
1
Contact: Susan Long, 708/216-5454 or
Sunday, November 24, 2002 - For all who
Nancy Leone, 708/216.7930 Streator
are awaiting a solid organ transplant, come to
Location: Mulcahy Outpatient Center,
Day:
3rd Thurs. of Each Month
the Preparing for Transplantation ConferLoyola Medical Center,
Time:
6:30 p.m. to 8:00 p.m.
ence at the O’Hare Marriott. Topics regard2160 S. 1st Ave., Room 0100
Contact: Mary Sue Goldsmith,
ing liver transplantation include living donor,
cadaveric, and pediatric.
815/872.3503
Mark Your Calendar!
Upcoming Clinical Trials and Research
The ALF Illinois Chapter tries to bring you a complete list of ongoing clinical trials and research. However, we suggest you ask your nurse or physician
if there are any other studies affiliated with their hospital.
Northwestern Memorial Hospital (Please contact Mary Harless at
312/469.4932 for more information, unless noted otherwise.)
Hepatitis C
Pegylated Interferon and Ribavirin for patients who have never
been treated. For more information contact Debbie Manka at
312/469.4885.
Pegylated Interferon and Ribavirin for patients who did not
respond to standard Interferon and Ribavirin.
Hepatitis B
Patients with chronic Hepatitis B infection to be treated with
Adefovir.
Liver Failure
Patients will be treated with a drug or placebo for a period of
72 hours as a part of the NIH (National Institute of Health)
sponsored US Acute Liver Failure randomized controlled
double-blind study. This study will examine the potential benefit of N-acetylcysteine in fulminant hepatitic failure. Etiology
is non-acetaminophen related.
The mental state of patients with cirrhosis and deep hepatic
encephalopathy will be evaluated through the US study
examining the effects of treatment with MARS (albumin dialysis). The study is a randomized controlled evaluation of five
days of MARS vs. standard therapy.
Rush-Presbyterian St. Luke’s Medical Center (Please leave a message
on the Rush study line at 312/421.4007 and a nurse will return your
call.)
Hepatitis C
Gamma-interferon: It is hoped that this experimental drug will
reverse the liver scarring caused by hepatitis C. This study will
enroll people who either failed a course of interferon or who are
not appropriate for interferon treatment. Participants must have
significant fibrosis noted on their liver biopsy report. Participants will receive either the gamma-interferon or a placebo injection three times per week for one year. The biopsy done before treatment will be compared to the biopsy which will be
done after treatment.
Pegasysä + ribavirin: Pegasysä is the pegylated version of Roche’s
Roferon-Aä. Because it is pegylated the injections are just once
per week. Pegasysä is not yet FDA approved. Participants will
receive Pegasysä + ribavirin for 48 weeks. The purpose of the
study is to collect safety and efficacy information.
Pegasysä + ribavirin in HIV + HCV (sponsored by Roche): The
purpose of the study is to learn more about the response to
Pegasysä + ribavirin in people who have HIV infection and
hepatitis C infection as compared to people who have only hepatitis C infection. This study is open to African Americans who
have not received interferon treatment. Enrollment is open in
both the hepatitis C only group and the hepatitis C and HIV
group.
Peg-Intronä + ribavirin: Peg-Intronä is the pegylated version
of Schering’s Intron-Aä. Because it is pegylated the injec-
tions are just once per week. This drug is already FDA approved. The study is looking at whether it is better to base the
dose of ribavirin on a person’s weight or if the standard dose is
appropriate for everyone. The study remains open to people
with genotype 2 but the genotype 1 group is already full.
Hepatitis B
Entecavir for hepatitis B: This study will treat people who are
taking lamivudine but still have measurable hepatitis B virus.
Participants will be either continue lamivudine or switch to
entecavir. Treatment will be for one year.
University of Illinois at Chicago (For more information contact Mary
Kozlowski at 312/413.5694)
Hepatitis C
Patients with normal liver enzymes (ALT and AST) are usually
not candidates for treatment. We are conducting a study comparing differences in liver function and disease progression in
patients with normal liver enzymes. Patients will be randomized to either be treated with pegylated interferon and ribavirin
or receive no intervention. All patients will be followed regularly by a physician.
African American, Hispanic, and Caucasian patients that are
genotype 1 and have never been treated for Hepatitis C are
eligible to participate in research to study racial differences in
response to treatment. Treatment includes the use of
pegylated interferon with/without ribavirin for the duration
of one year.
Individuals that are non-responders to interferon and ribavirin
are eligible to participate in a non-responder trial using
pegylated interferon and ribavirin. Patients must have a liver
biopsy done within the last three years and elevated liver
enzymes.
Co-infected patients (patients with Hepatitis C and HIV) are
able to participate in a trial using pegylated interferon and
ribavirin. Patients must be African-American or Caucasian,
have elevated liver enzymes, be genotype 1, have liver biopsy results or be willing to undergo a liver biopsy, and have
never been treated for Hepatitis C.
University of Chicago (For further information or to apply for these
studies, please contact Katie Wherity at 773/702.4477)
Hepatitis C
Studies using Pegylated-interferon plus ribavirin for patients
who have never been treated with interferon before.
A study using Pegylated-interferon plus ribivirin for patients
who are non-responders to interferon plus ribivirin.
Non-alcoholic Steatohepatitis
A study involving Actos for non-alcoholic steatohepatitis
patients.
Post-transplant
A study for post-transplant patients who are experiencing
nephrotoxicity due to their immunosuppression medicines.