OCTOBER 18, 2013 4 ANNUAL FIGHT C. DIFF GALA
Transcript of OCTOBER 18, 2013 4 ANNUAL FIGHT C. DIFF GALA
MISSION
The Peggy Lillis Memorial Foundation works to increase prevention of and
minimize death and disability resulting from clostridium difficile infection and
associated diseases by educating physicians, patients, and the public at large,
and by advocating for proven solutions within health care and public health
systems.
NATIONAL ADVISORY COUNCIL
Christian John Lillis
Co-founder & Executive Director
Victoria Amari
Helen Beigel, RN
Denice Hilty, DC
Tammy Kohlschmidt
Julie Reagan, PhD, JD, MPH
Moshe Rubin, MD
Erik Satre
Alicia Skovera, MSW
Cynthia Wagner, RDH
Reid Winick, DDS
Chirstopher Young
Liam James Lillis
Co-founder
CONTACT US
266 12th Street, #6 Brooklyn, NY 11215
t: 917.364.4658 e: [email protected]
w: www.peggyfoundation.org
PROGRAM
COCKTAIL RECEPTION
WELCOME AND INTRODUCTION Christian John Lillis & Liam Lillis, PLMF
ONE PATIENT’S PERSPECTIVE ON LIVING WITH C. DIFF
Catherine Duff, Fecal Transplant Foundation
PLMF AWARD PRESENTATIONPRESENTED BY DR. MARTIN BLASER,
NYU LANGONE MEDICAL CENTERto Congresswoman Louise Slaughter
UNVEILING THE PEGGY LILLIS MEMORIAL FOUNDATION’S 3-YEAR STRATEGIC PLANChristian John Lillis, PLMF
WELCOME LETTER
Welcome the 4th Annual FIGHT C. DIFF GALA. Tonight is a celebration of the
progress we’ve made in our fight against clostridium difficile (C. diff) infections,
Congresswoman Louise Slaughter’s remarkable record of public service, and
the unveiling of our new 3-year strategic plan.
Later this month would have been Peggy’s 60th birthday. Though few people
enjoy getting older, she embraced each new decade and deemed it was better
than the last. She was a believer in the maturity that age and experience bring.
Becoming a single mother at 24 meant that Peggy had to grow up fast. This
wasn’t always easy but her many sacrifices helped us to become the men we
are today.
Much like Peggy, the foundation is getting better with age. In four years, we
have grown from being a small organization comprised mostly of Peggy’s family
and friends to a significant player in the battle against C. diff. Our first gala was
sponsored primarily by friends, local businesses and Peggy’s union, the United
Federation of Teachers (UFT). This year we have seven corporate sponsors,
including Cubist Pharmaceuticals, Meridian Bioscience and Sanofi Pasteur.
Similarly, this year UFT is joined by the American Postal Workers Union, the
United Steelworkers and Rochester & Vicinity Central Labor Council. And we
continue to be supported by friends old and new.
More important than their generous financial support is that the growth
and diversity in our sponsors reflects the growing movement to fight C. diff.
This emerging awareness of C. diff as a threat to public health is visible in:
• Increased depth and breadth of reporting on C. diff, including national
news stories from Reuters and the Associated Press to local papers like the
Stockton Daily Record,
• The growing number of hospitals fusing their janitorial services and infection
control departments, leading to impressive declines in C. diff transmission,
• The increasing number of C. diff sufferers using social media to connect, share
stories and advocate for themselves and others on Facebook and Twitter,
• The number of companies engaged in everything from developing C. diff
vaccines to more sensitive and accurate testing to better cleaning products,
• The growing awareness that antibiotic overuse (a chief driver of the C. diff
epidemic), both in agriculture and medicine, is not only lessening their
effectiveness but also spurring treatment resistant strains, and
• New organizations like The Fecal Transplant Foundation are rising up to
spread awareness of C. diff and new treatments.
At the same time, our understanding of the C. diff epidemic’s nature is shifting
A recent genetic analysis of C. diff infections at the four Oxford University
Hospitals during a three-year period found that in only 35 percent of cases the
bacteria passed from one person to another in the hospital. In other words, nearly
two-thirds of all C. diff cases are originating outside of hospitals. This finding
and others including the doubling of C. diff
rates from 2000 – 2010, increased C. diff
risk due to antacids use, and the infection’s
spread into previously low-risk popula-
tions, including pregnant and postpartum
women, and otherwise healthy children,
demonstrate the need for broad-based
public education.
Part of maturing has been developing
our first strategic plan that we’re unveil-
ing tonight. This plan is the result of 9
months of work on the part of a core team
of PLMF volunteers and consultants from
National Executive Service Corps (NESC). NESC did extensive research into
the C. diff epidemic, the landscape of organizations, government agencies
and companies in the fight against it, and gathered the wisdom of a cadre of
experts in medicine, public health, healthcare policy, and patient safety as well
as several former C. diff sufferers. This plan is the basis of our strategy and
growth over the next three years as we broaden our educational reach, focus
our advocacy efforts, and grow to a scale that enables us to truly move the
needle on this epidemic.
Finally, we are thrilled to present our Lifetime Achievement Award to
Congresswoman Louise Slaughter. Congresswoman Slaughter is a true pioneer
and as the sole microbiologist in Congress an incredible advocate for medical
science, research, and public health. Her distinguished career in the House
of Representatives includes an impressive legislative record of expanding
health research and care for women, preventing insurance companies from
discriminating against people based on genetic information, introducing the
Preservation of Antibiotics for Medical Treatment of 2013 (PAMTA), designed to
significantly reduce the quantity of antibiotics routinely used in food production,
and serving as one of the lead authors of the Affordable Care Act.
We continue to provide critical information and support to C. diff sufferers
and their families across the country. Our maturation process is embodied in our
new plan, our engagement of elected officials like Congresswoman Slaughter
and our growing network of doctors, public health experts, corporate partners,
patient safety activists and thought leaders in healthcare. Together, we will
accelerate the movement to truly fight C. diff and amplify our impact so that
more people know the risk factors, symptoms, available treatments, and, most
important, how to prevent this dangerous infection.
Thank you for joining us for a night of celebration and to recommit ourselves
to the fight against C. diff in memory of our mother and on behalf of all those
whose lives may be saved.
With love and gratitude,
Christian John Lillis Liam LillisCo-chair Co-chair
Peggy with her sons Christian (left) and Liam.
HONOREE:
CONGRESSWOMAN LOUISE SLAUGHTER
Elected in 1986 to represent the people of
Monroe County New York in the U.S. House
of Representatives, Congresswoman Louise
M. Slaughter (D-NY-25) is the Ranking
Member of the Committee on Rules. From
2007–2011, Congresswoman Slaughter served
as Chairwoman of the Committee on Rules,
making her the first woman in history to serve
in that role. A member of the House Democratic
Leadership, she also serves on the Democratic Steering & Policy Committee.
As the only Member of Congress with a degree in microbiology, Louise has
played a central role in the major health and science issues of our time. She had
a lead role in crafting and passing the Affordable Care Act, and brought the
legislation to the House Floor for final passage.
She is the original author of the Genetic Information and Non-Discrimination
Act (GINA), which is now Public Law No. 110-223. Called the “first civil rights
legislation of the 21st Century” by Senator Ted Kennedy, GINA prevents health
insurance companies from revoking an individual’s insurance or employers from
terminating an employee based on genetic information.
She also authored the Preservation of Antibiotics for Medical Treatment
Act, which would end routine use of antibiotics on healthy animals, curbing the
growing threat of superbugs. In 2011, Louise confirmed with the FDA that 80%
of antibiotics used in the U.S. are used on animals. This habitual use has been
linked to the growing threat of antimicrobial-resistant infections in humans.
PAMTA would phase out the use of 8 important classes of antibiotics on healthy
animals while allowing for their use to treat sick animals.
Louise also champions women’s healthcare issues & equal rights. As a mem-
ber of the House Budget Committee in the early 1990s, she secured the first
$500 million earmarked by Congress for breast cancer research at the National
Institutes of Health (NIH).
She also successfully fought to pass legislation guaranteeing women &
minorities are included in all federal health trials, and established an Office of
Research on Women’s Health (ORWH) at NIH. Ten years after the creation of
ORWH, the NIH awarded Louise the “Visionary for Women’s Health Research”
award.
Congresswoman Slaughter holds a Bachelor of Science in Microbiology and
a Master of Science in Public Health from the University of Kentucky. Prior to
entering Congress, she served in the New York State Assembly (1982-86) and
Monroe County Legislature (1976-79).
A native of Harlan County, Kentucky, Congresswoman Slaughter has lived
most of her life in Rochester, New York’s suburb of Fairport. She is married
to Robert Slaughter and together they have three daughters and seven
grandchildren.
FACES OF C. DIFF
David L’Heureux was a healthy, 39 year old man who was loving life,
traveling the world and working at his dream job until a business trip to China in
2004 started a downhill spiral that he continues to fight today. During this trip,
David developed abdominal cramping and diarrhea. Thinking it was a traveler’s
illness, he took some Cipro and continued to teach a course for physicians in a
Shanghai hospital, which was far removed from the nearest C. diff patient treat-
ment areas.
The following day, he awoke with increased abdominal cramping, a slightly
distended abdomen, non-stop diarrhea and a fever. Still thinking it was caused
by something he had eaten, David continued teaching and struggled through
the day with his fever rising, chills, increased distention, frequent diarrhea and
worsening dehydration. The 13 hour plane ride back to the USA was awful, he
was shivering and sweating, he couldn’t stay out of the lavatory, the odor was
nauseating and David’s abdomen looked like he was pregnant.
Once back in the United States, David went to his Family Practitioner who
directly admitted him to the hospital and started him on Vancomycin and Flagyl.
Despite treatment, throughout the night his abdominal pain became unbearable,
his fever was dangerously high and he was experiencing uncontrollable diarrhea.
David was transferred to the ICU where he was told that he was suffering from a
severe case of Clostridium difficile (C. diff) and had toxic megacolon. The C. diff
was resistant to the antibiotic therapy and surgery was imminent! When David
awoke from the surgery, he had tubes and wires coming out of everywhere, his
abdomen had a very long incision with a lot of staples and he had an illeostomy
bag high up in the right side of his abdomen. Even after the surgery, David had
several recurrences of C. diff over the next 4 years, ended up with a total colec-
tomy and several inches of his small intestine removed, and now has a permanent
high-output ileostomy (an opening in the lower abdomen to allow intestinal
waste to pass.)
Almost nine years after first contracting C. diff, David still battles many chal-
lenges resulting from this superbug. He has had several medical issues, including
infections that resulted in the removal of his gallbladder, and severe Torticollis
(cervical dystonia) which causes Parkinsonian-type tremors of his head and neck
resulting from some of his medications. David has had two brain operations to
implant a Deep Brain Stimulator (DBS) to help control the tremors and he has
struggled to maintain his weight due to his body’s poor ability to absorb nutri-
ents, fats and calories since the food passes through his system so quickly.
When asked how he gets up every day, he notes that most days it’s with a
smile on his face. He credits his deep faith, incredible support from family and
friends from all over the world that allow him to push on. He also takes comfort
in connecting with others who are dealing with the same issues he’s dealing with;
they talk with one another, motivating each other to stay positive! David also
faces his fears by learning more about them. While the health issues scare him,
he doesn’t let them control his life to the best extent he can. He shies away from
self-pity and focuses on the happiness he feels to still be here to share his story.
Judy Dexter, a [insert age] mother of [insert number of children] went
to the hospital in December 2012 due to difficulty breathing. She was admitted
for a lung infection and treated with antibiotics for 8 days. Thinking Judy was
on the mend, her family was not prepared for the torment that the following
months would bring.
Three days after being discharged from the hospital, Judy had uncontrollable
diarrhea, resulting in severe dehydration. Her doctor prescribed a series of
diarrhea medicine and instructed her to change her diet to bulk foods. It took
another two and a half weeks, and a return trip to the hospital, for Judy to be
diagnosed with Clostridium difficile (C. diff).
Judy’s family learned about C. diff very quickly, and it became second nature
for them to don protective gowns and gloves before visiting her.
January 2013 brought powerful antibiotics by mouth and enemas. When
those didn’t work, the doctors introduced the possibility of colon removal
surgery. Her family didn’t understand how Judy went from having a lung infec-
tion to this point and they intervened, looking for alternate treatments. That’s
when her new gastroenterologist recommended a stool implant. They made two
attempts, one week apart along with Vancomycin but the C. diff continued to
ravage her colon.
The doctors again recommended colon removal, but with a high mortality
rate in people over age 65, Judy’s family again searched for other options. As
an alternative, Judy underwent a minimally invasive procedure called Diverting
Loop Ileostomy & Colonic Lavage, along with several rounds of powerful
Vancomycin applied directly to her colon. The results were promising as the
colon swelling was reduced and the C. diff appeared to be in remission.
However after having to treat a serious non-related infection with antibiotics,
it returned again. Judy lost so much weight and eventually had to have a feeding
tube inserted.
It wasn’t until after consulting with a doctor from John’s Hopkins that Judy’s
family learned that antibiotics should NOT be used in tandem with stool trans-
plants, and she should not have received ANY antibiotics before or after the
procedure. Her family suspected this before the transplants, but trusted the
doctors caring for Judy.
Judy and her family were fighting a two headed dragon. Each time she would
fight off an infection or start to get stronger from her lengthy hospital stay, the
C. diff would return and knock her back down.
Being confined to the hospital and debilitated with C. diff was excruciating,
and deprived Judy of the thing she loved most, time with her kids & grand kids.
Judy and her family lost the fight with C. diff on May 30, 2013 just six months
after it all began.
Judy’s family found a valuable tool during this experience to aid in the com-
munication with family members — the website Cozi (www.cozi.com).They were
able to organize visits with Judy, share health reports, and journal her progress
for close family and friends. Judy’s family also found tremendous support from
the doctors, staff and especially the nurses at Mercy Medical & Johns Hopkins
Hospital, who truly became a second family throughout Judy’s care.
FACES OF C. DIFF
Megan F. is a 29 year old wife and mother of three small children, who
has struggled with Clostridium difficile (C. diff ) for the past year before receiv-
ing a fecal transplant, which has successfully treated the condition to date.
Throughout her experience, Megan and her family kept asking the question:
how does a healthy 29 year old woman get C. diff ? While Megan is not sure
at what point she contracted C. diff, her first indication that something wasn’t
right was in mid-2012 when she was pregnant. She would often have entire days
of vomiting and diarrhea, which she chalked up to not having a gallbladder and
being pregnant at the time.
On April 27th 2012, the vomiting and diarrhea progressed to include a
burning sensation, which persisted for two days and then stopped, so Megan
thought it was just a stomach bug. On the fourth day, it started again but was
very intense and the burning was extremely bad. That day Megan ended up
delivering her third child, two weeks early. Thankfully he was healthy.
Within one month of his delivery, Megan’s symptoms began again and per-
sisted primarily after eating breakfast each day, which prompted her to keep a
food diary to try to find an association to the pain. Her symptoms continued to
worsen however and after a few weeks it progressed to every meal or snack.
Because of the burning sensations Megan was experiencing, she saw a GI doc-
tor, who initially ordered an upper Endoscopy, which revealed nothing. When
the symptoms continued, she was tested for C. diff, and when the test was
positive, she was started on flagyl. After two weeks, Megan was told the strain
of C. diff she had would not respond to the treatment and was switched to
vancomycin.
The new treatment also proved to be ineffective, even after multiple rounds
of treatment and at this point her doctor recommended Megan consider a fecal
transplant. During her initial treatments, Megan spent large amounts of time in
her ER, and was given multiple rounds of IV fluids and pain medications, result-
ing in her body cycling through bouts of diarrhea/vomiting to constipation,
which meant that her digestive tract was shutting down and her body would
stop processing the food she was eating. Then it would reject it, hence the
vomiting/diarrhea.
Based on her doctor’s recommendation, Megan began to research fecal
transplant providers and costs. She was thrilled to find out that her insurance
would cover it and her hospital provided them. The hospital staff confirmed
Megan was a perfect candidate, and she met with the infectious disease
department to start the process. This is when I hit rock bottom and lost all of
my faith in my hospital and its staff.
Unfortunately, Megan’s meeting with the ID doctor was not a positive
experience and resulted in her losing faith in the hospital and its staff. During
this meeting, she was told that “only patients in their 80’s get fecal transplants”,
and recommended several rounds of antibiotic treatments, which would be
extremely costly and had already proven to be ineffective in Megan’s case.
Megan refused, insisting that if the hospital would not do a fecal transplant,
then she would go elsewhere. During this conversation, Megan also asked the
FACES OF C. DIFF
doctor about disinfecting methods. The doctor told her that she only needed
to clean her bathroom and kitchen, and suggested using Clorox wipes, which
according to the CDC do not work since they DO NOT contain any bleach. This
meeting left Megan feeling hopeless, since this “expert” did not seem knowl-
edgeable about her condition. She felt lost, and believed that she was going to
die of this illness as her grandmother did.
After that conversation, Megan visited with her plastic surgeon, who encour-
aged her to go to GI and to talk with them. She did, and the doctor she spoke
with scheduled her on the spot for a fecal transplant, even going as far as to
give her a specific date, time and instructions. He explained that some doctors
feel only antibiotics can fix C. diff but he had a different opinion. He did encour-
age Megan to continue antibiotics until her transplant, which she did until three
days prior to the procedure.
Megan noted that the prep for the fecal transplant was uncomfortable, but
not painful. It required her to take several rounds of laxatives so she ended up
making lots of trips to the bathroom (at one point she was in the bathroom
every 10 minutes for several hours), which started with major cramping /
burning and having to run to the bathroom after the final round of laxatives.
The pain continued until sixty minutes before my transplant was to start.
Even through the discomfort, Megan was not nervous at any point because
she knew she had to go through with it; she had to live for her children. The
staff was very thorough, nice and respectful leading up to the procedure,
introducing themselves to Megan and making sure that she remained covered
up until she received the IV meds that put her to sleep. In all, Megan felt very
comfortable.
The next thing Megan recalls is being back in a recovery room. She did not
feel sick, and a nurse was there to answer questions and make sure Megan had
everything she needed. The doctor told Megan she looked great - no signs of
colitis, or diverticulosis – and she was released within 30 minutes.
As a result of this one year ordeal, Megan learned that her skin disease is
what caused this. As a result of it, she frequently used a topical version of
Clindamycin, which she can no longer use. Since developing C. diff, Megan
now has to meet with 40 specialists, who will be tasked with finding a solution
to her skin disease and a treatment to put it into remission.
Megan’s message to those going through C. diff infection is to not lose
hope. If you are faithful, pray. It can be comforting. Fight for yourself. If you
feel that getting a fecal transplant is your only option to be cured, then get
one, even if you are embarrassed. It can save your life and it “could” prevent or
stop colitis. If your hospital will not or does not provide transplants, then ask to
be referred to one who will. Megan hopes that sharing her story gives people
going through similar struggles the hope, perspective and a renewed strength
to keep fighting.
FACTS ABOUT CLOSTRIDIUM DIFFICILE (C. diff)
WHAT IS C. DIFF?
Clostridium difficile (C. diff) is a naturally occurring bacterium that is passed
in feces and spread to food, surfaces and objects when infected people do not
wash their hands thoroughly.
C. diff can survive outside of the body for months and people can become
infected by touching contaminated items or surfaces and then touching their
mouth or mucous membranes.
Healthcare workers can spread the bacteria to patients or surfaces through
hand contact.
When C. diff bacteria grows in the bowel, it produces two dangerous toxins
that attack the lining of the intestine and cause diarrhea, causing a disease
known as C. diff associated disease (CDAD). CDAD ranges from mild to chronic
to life-threatening, and can result in serious intestinal conditions such as colitis
(inflammation of the colon), sepsis (blood poisoning), and, in a growing number
of cases, death.
Antibiotics, especially those with a broad spectrum of activity, cause disrup-
tion of normal intestinal flora, leading to an overgrowth of C. diff. This leads to
pseudomembranous colitis, an infection of the colon often caused by C. diff.
• C. diff-related diarrhea is most strongly associated with use of fluoroqui-
nolones (e.g., Cipro), but is also seen in patients taking clindamycin (e.g.,
Cleocin), third-generation cephalosporins (e.g., Lorabid) and beta-lactamase
inhibitors (e.g., Penicillin).
• C. diff is increasingly linked to proton-pump inhibitors, including many over
the counter antacids like Prilosec and Prevacid.
Deaths related to C. diff increased 400% between 2000 and 2007, due in part
to a stronger germ strain.
• Experts estimate that every year, preventable C. diff infection kills more
than 30,000 Americans and costs the healthcare system an extra $1 billion
annually.
HOW DO I PREVENT CDAD?
4 Wash your hands often, especially after using the bathroom and before
eating.
4 Clean surfaces in bathrooms and kitchens regularly with chlorine bleach-
based products.
4 Wash soiled clothing with detergent and chlorine bleach.
4 Ask all doctors, nurses, and other healthcare providers to clean their hands
with warm soap and water before caring for you — alcohol-based hand
sanitizers do not eliminate C. diff.
4 Only take antibiotics as prescribed by your doctor, and ask your doctor if
you have symptoms of CDAD.
INFECTION PREVENTION CHECKLIST
The following information can help you assess your or a loved one’s risk of
contracting C. diff, symptoms to look out for if you are at risk of C. diff infection
and questions to ask your doctor.
You are at risk for C. diff infection if you:
• Are taking or have recently taken antibiotics or have used a protein pump
inhibitor for any reason.
• Have recently stayed in the hospital for an extended length of time.
• Are 65 years of age or older. Older adults have a disproportionately high
infection rate.
• Have had bowel or gastrointestinal (GI) surgery.
• Are undergoing or have recently undergone chemotherapy treatments.
• Have a compromised immune system, including being HIV positive.
Consult your doctor if you experience the following symptoms:
4 Watery diarrhea (more than three bowel movements per day) or blood in
the stool.
4 Fever.
4 Nausea and/or loss of appetite.
4 Abdominal pain/tenderness.
If you are at risk for contracting C. diff or think you may have CDAD, consult
your doctor. Questions to ask include:
• Do the antibiotics you’re prescribing increase my risk of C. diff?
• Why does antibiotic use put me at higher risk of contracting C. diff?
• Which antibiotics are most strongly associated with C. diff infection?
• Since antibiotic use is associated with C. diff infection, which antibiotics
are safe to take if I have CDAD?
• Am I at risk for C. diff infection?
• How can you tell if I’ve been infected with C. diff?
• How can I prevent C. diff infection?
• What treatment options are available if I’ve contracted C. diff?
If you or a family member is hospitalized (or if an elderly relative is in a nursing
home), you should ask the following questions:
• What is the transmission rate of hospital-acquired infections at this medical
center?
• How can we prevent C. diff infection during the hospital stay?
• Would you please wash your hands with soap and warm water before
treating me (or my loved one)?
HOW IS C. DIFF TREATED?
The first step in treating C. diff is to stop taking the medication (typically
a broad-spectrum antibiotic) that triggered the infection. For mild illness,
this may be enough to relieve symptoms. But many people require further
treatment, including:
ANTIBIOTICS
The standard treatment for C. diff is another antibiotic. These antibiotics keep
C. diff from growing, which allows normal bacteria to flourish again in the
intestine.
• Fidaxomicin (DIFICID™) is the first antibacterial drug indicated for CDAD to
be approved to treat C. diff in nearly 30 years.
• Metronidazole (Flagyl®) is effective against anaerobic bacteria and certain
parasites, selectively blocking some of the functions within the bacterial
cells and the parasites resulting in their death.
• Vancomycin (Vancocin®) is used to treat to treat bacterial infections of the
intestines, and is typically the drug of choice for severe, complicated C. diff
infection.
The most common side effects of ficaxomicin include nausea, vomiting and
abdominal pain. The most common side effects of metronidazole and vanco-
mycin include nausea and a bitter taste in your mouth. It’s important not to
drink alcohol when taking metronidazole.
PROBIOTICS
Probiotics are organisms, such as bacteria and yeast, which help restore a
healthy balance to the intestinal tract. A natural yeast called Saccharomyces
boulardii, in conjunction with antibiotics, has proved effective in helping pre-
vent recurrent C. diff infections.
FECAL MICROBIOTA TRANSPLANTATION (FMT)
FMT involves restoration of the bacterial flora in the colon of someone infected
with C. diff by introducing healthy bacterial flora through infusion of stool
obtained from a healthy human donor. Donors must be tested for a wide array of
bacterial and parasitic infections. The fecal transplant material is then prepared
and administered in a clinical environment. The procedure involves single to mul-
tiple infusions of the healthy fecal material, and is usually carried out via enema,
colonoscope, or nasogastric or nasoduodenal tube. Most patients with C. diff
recover clinically and have the bacteria eradicated after just one treatment.
SURGICAL INTERVENTION
In the case of severe C. diff infection, surgery may be considered as a
treatment option.
RESOURCES FOR C. DIFF SUFFERERS
In addition to the work of the Peggy Lillis Memorial Foundation, there is a growing
body of resources for C. diff sufferers and their families. Please visit these web-
sites to find support or become an advocate.
Christopher M. O’Neal, Ph.D.Raf Rizk, M.D.Illustrations by Marianne Khalil
From a doctor and a patient, practical, hopeful advice for
your life.
“The Centers for Disease Control and Prevention estimate that half a million Americans will be diagnosed with a infection this year. We are so pleased that Doctors O’Neal and Rizk have written this book. The dearth of easily understandable knowledge about C. diff for those facing the
demic.”From the foreword by Christian and Liam Lillis
translations of confusing medical terms, and stories from
Clostridium
0891337805789
ISBN 978-0-578-08913-390000
Colectomy — In cases in which a patient’s colon has been damaged by inflam-
mation or has become perforated, physicians may recommend a subtotal
colectomy (removal of the infected portions of the colon while preserving the
rectum) or a total colectomy (full removal of the colon).
Ileostomy — If the colon is removed, the patient will need to have an ileostomy,
a procedure in which the small intestine is surgically attached to the abdominal
wall to allow waste to be eliminated through an opening in the abdominal wall
into an ileostomy pouch.
FOR SUFFERERS
Clostridium difficile Support Group
www.cdiffsupport.com
Clostridium difficile: A Patient’s Guide
ISBN 978-0-578-08913-3
Available through
Barnes & Noble,
Amazon.com or
by visiting www.c-
difficile-book.com
Foreword by Christian
John Lillis & Liam Lillis
Facebook C. diff Support Group
http://www.facebook.com/groups/
Cdiffsupport/
Empowered Patient Coalition
www.empoweredpatientcoalition.org
Medically Induced Trauma
Support Services
www.mitss.org
Fecal Transplant Foundation
http://thefecaltransplantfoundation.
org/
FOR ADVOCATES
RID: Committee to Reduce
Infection Deaths
www.hospitalinfections.org
Citizens for Patient Safety
www.citizensforpatientsafety.org
Consumers Union Safe Patient
Project
www.safepatientproject.org
Sepsis Alliance
www.sepsisalliance.org
ACCOMPLISHMENTS IN 2013
In 2013, the foundation continued to grow its presence and impact through a
series of collaborations and by raising awareness in the media by contributing
to reporting on the C. diff epidemic and publishing a series of op-eds. We also
worked with stakeholders and consultants from the National Executive Service
Corps to develop our first 3-year strategic plan. This plan will focus our work
over the next three years to ensure we make the greatest impact with our
limited human and financial resources while working to grow The Peggy Lillis
Memorial Foundation to the scale necessary to move the needle on the C. diff
epidemic. Throughout the year, we also provided support to many C. diff suf-
ferers and solace to many families who lost a loved one. Of course, none of our
work would be possible without the incredible support of our National Advisory
Council, Gala Committee, fellow patient safety activists, and friends and family
members.
BUILDING PARTNERSHIPS TO INCREASE IMPACT
• In December, the foundation was invited to serve as a community rep-
resentative at a conference on Clostridium difficile infections held at the
University of Texas Medical Branch in Galveston, Texas. The conference was
sponsored by Institute for Translational Science, University of Texas Medical
Branch, Texas Children’s Microbiome Center, Baylor College of Medicine &
Texas Children’s Hospital. A significant outcome of the conference was the
creation of a Gulf Coast C. diff Collaborative of doctors, researchers, and
public health experts who are working together to raise awareness and
increase community engagement in combating the C. diff epidemic in their
region. PLMF continues to work with this impressive group as a standing
community representative for the collaborative.
• In February, PLMF co-sponsored Selling
Sickness: People Before Profits, a confer-
ence organized by activist Kim Witzcak and
academic Leonore Tiefer. The conference saw
two hundred activists, academics, physicians,
journalists, and healthcare workers come
together to take on the dysfunction in the
United States healthcare system, particularly
with respect to the epidemic of over-diagnosis
and overtreatment. The conference was an
excellent opportunity for us to meet patient
safety advocates from across the country and build relationships with those
interested in curbing the overuse of antibiotics — a primary driver of the C.
diff epidemic.
• In August, leading vaccine company Sanofi Pasteur interviewed our execu-
tive director for a recruitment video for its Phase III clinical trial of a C. diff
PLMF SUCCESSES
vaccine. The trial’s objective is to evaluate the safety, immunogenicity and
efficacy of a toxoid vaccine for the prevention of primary symptomatic
Clostridium difficile Infection. The investigational vaccine stimulates a per-
son’s immune system to fight C. diff toxins upon exposure and may prevent
a future CDI from occurring. The trial, called Cdiffense, began in August 2013
and is expected to last for three years with participants drawn from 17 coun-
tries. The recruitment video, which includes the stories of Peggy and others
afflicted by C. diff, is being run in hundreds of healthcare facilities, pharma-
cies and doctors’ offices in participating countries.
RAISING C. DIFF VISIBILITY
The foundation continued to play a prominent role in raising awareness of
C. diff in the media, the press, the Internet and social media. Notable accom-
plishments include:
• Publishing a letter to the editor in the New York Times noting that more than
28,000 people die from C. diff every year according to the Department of
Health and Human Services, double the 14,000 number they had recently cited.
• Our executive director was quoted in the Associated Press article, “Hospitals
See Surge of Superbug-Fighting Products”, carried by hundreds of news-
papers nationwide, as well as in a series of articles about a local hospital’s
failure to report C. diff outbreaks in Stockton, California.
• Publishing four editorials including “The revulsion over feces: Get over it”
on the influential KevinMD.com website and pieces in Women’s E-news,
Park Slope Patch and the Rochester Democrat & Chronicle.
• Our executive director also had his first radio interview on Speak Up &
Stay Alive.
• Engaged Congresswoman Louise Slaughter, sponsor of Preserving
Antibiotics for Medical Treatment Act (PAMTA) and coauthor of the
Affordable Care Act, as first elected to receive our Lifetime Achievement
Award and as a partner in efforts to curb the overuse of antibiotics.
BUILDING OUR CAPACITY
• Recruited Dr. Joseph Pulvirenti of Chicago and Alicia Skovera, MSW of New
York to augment clinical and social work expertise and build a truly nation-
wide advisory board.
• Created Thank-A-Mother promotion for Mother’s Day 2013, our first
organized effort to solicit low-dollar donors through low-overhead program.
• Developed our first 3-year strategic plan to focus our organization’s efforts
to educate the public about C. diff globally while working locally to advance
legislation aimed at pushing the healthcare system to reduce infection rates.
In memory of
Elizabeth Anne Hutchins Young
(1939 – 2013)
Your lifetime of service to your family, friends, faith community and the
most vulnerable children of Durham County inspires us to redouble our
efforts to fight C. diff to ensure that people with Parkinson’s disease
and other debilitating illnesses are not further harmed by healthcare
associated infections.
Though you and Peggy only met a few times in life, we imagine you
both kicking back in Heaven watching your children and grandchildren
and cheering us on to be the best that we can be.
All our love to Anne and Peggy, forever and ever,
Chris, Christian and April
Love you and miss you, Mommy.
— Liam and Melissa
Congratulations to The Peggy Lillis
Memorial Foundation on its achievements
and advancements to fight Clostridium
difficile.
Thank you to the 2013 Raffles Committee
for your friendship, contributions and
good work.
Helen Bassi Peggy Lillis
1953 – 2008 1953 – 2010
“60 years remembered with love,
light & laughter.”
— Maryann Bassi
Focused on biologics for the prevention and treatment of serious infectious diseases
www.syntheticbiologics.com
Lead anti-infective biologic candidate
SYN-004 an oral enzyme
for the prevention of C. diff infections
A proud sponsor of The Peggy Lillis Memorial Foundation
ANGELS
Anonymous
Christian John Lillis &
Chris Briggs Young
CAREGIVER
EMERALD
American Postal Workers Union
Randy Demeyers
Joan Rothschild Hardin, PhD
Liam Lillis & Melissa Parmigiani
Synthetic Biologics
United Federation of Teachers
United Steelworkers
Xenex Healthcare Services
GOLD
Maryann Bassi
Helen Beigel
James Cook & Iris Merced
Frances Curry
Jim Daly
Robby Daly
David T. L’Heureux & Diane St. Louis
Dorothy “Baby Ann” Manzo
Brian & Mary Morgan
Diane R. Parmigiani
Moshe Rubin, MD &
Jennifer Mueller, MD
Bob & Ann Tracey
Van West Media
Cynthia Wagner, RDH
FRIEND
Anonymous
Sean & Lynn Brereton
Buckley’s Tavern & Caterers
Daniel & Dorothy Burns
Thomas & Noreen Daly
John DeAngelis & Patty Yu, MD
Denice Hilty, DC/Transformational
Healthcare
Hans Johnson
Michelle Kristel & Genevieve Dinouart
Nora & Helen McCaffrey-Birney
Donna McColgan
Pamela Poland
Rochester & Vicinity Central Labor
Council, AFL-CIO
Erik Satre & Anisha Kansal
Alicia Skovera & Heather Guthrie
SPONSORS
RAFFLE DONORS
Maryann Bassi
Lynn Halligan
Phyllis McEwan
Helen Beigel
Phyllis D’Accordo
Noreen & Tom Daly
Baby Ann Manzo
Donna Rea & Family
James Perri
Tricia Perri
Friends of Peggy from PS 198
Meat Supreme
Coluccio’s
Peggy Lillis Foundation
RAFFLE DONORS
EVENT COMMITTEE
Co-Chairs
Christian John Lillis & Liam Lillis
Vice-Chair
Maryann Bassi
Terri Amari
Victoria Amari
Helen Beigel
Lynn Halligan
Phyllis McEwan
Melissa Parmigiani
Shannon Smith
Christopher Young
We are deeply grateful to everyone who gave so generously of their time and
expertise in helping us develop our new strategic plan, including Victoria Amari,
Helen Beigel, Dr. Martin Blaser, Rosemary Gibson, Joan Hardin, Dr. Denice Hilty,
Hans Johnson, Dr. Cliff McDonald, Lisa McGiffert, Chris O’Neal, Julie Reagan,
Dr. Moshe Rubin, Patty Skolnik, and Alicia Skovera.
We are also grateful to John Chan for donating his fabulous photography
services for the fourth year in a row!
GRATITUDE
Hans Johnson
Evelyn Kulka
Lisa LoBue
David T L’Heureux & Diane St. Louis
Suzanne Mattei
Pamela Poland
Alicia Skovera & Heather Guthrie
AMBASSADORS COMMITTEE
ABOUT THE PEGGY LILLIS MEMORIAL FOUNDATION
The Peggy Lillis Memorial Foundation, created in memory of Brooklyn
Kindergarten teacher Peggy Lillis who lost her life in just six days to a
Clostridium difficile infection in April 2010, is the first national organiza-
tion dedicated to reducing and eradicating C. diff infections, or CDIs,
through education and advocacy. Though largely preventable, every
year CDIs claim the lives of 28,000 Americans, and sicken another sev-
eral hundred thousand. For more information about how you can avoid,
recognize, and prevent CDIs, join us at www.peggyfoundation.org.
CONTACT US
266 12th Street, #6 Brooklyn, NY 11215
t: 917.364.4658 e: [email protected]
w: www.peggyfoundation.org