News: FRIDAY highlights
Thursday | Friday | Saturday & Sunday
EXPERTS WILL ANSWER QUESTIONS ABOUT PROPHYLAXIS,
INHIBITORS AND IMMUNE TOLERANCE
If patients have questions about prophylaxis, inhibitors or immune tolerance,
chances are good Amy D. Shapiro, MD, and Kathy Bosma, RN, have the answers.
Dr. Shapiro, medical director of the Indiana Hemophilia and Thrombosis Center,
and Bosma, nurse coordinator of the Michigan State University Center for
Bleeding and Clotting Disorders, will give a lecture entitled, “Everything
You Always Wanted to Know About Prophylaxis, Ports and Immune Tolerance,
but Were Afraid to Ask.” The lecture, which will be geared toward patients,
will run from 3 to 5 p.m. today in Imperial Ballroom B.
Whatever they need to know is what we are going to cover,” Dr. Shapiro
said. “The talk is on prophylaxis, inhibitors and immune tolerance,
so it is covering a huge range of topics. I assume people will come from
a variety of places in terms of what they want to get out of the forum. So
I am hoping to make it as informal as possible.”
Dr. Shapiro said she will give a PowerPoint presentation that will begin
listing the most basic definitions, to make sure everyone is on the same
Prophylaxis — the regular infusion of clotting factor administered
to prevent or suppress bleeding episodes — is an aggressive and effective
treatment for bleeding disorders, she said. But with the treatment come lots
of questions that parents need answered. Inhibitors — an antibody that
develops against the factor that is deficient — are also an area of
concern for patients and their parents, Dr. Shapiro said. Treatments are
available to battle these inhibitors, but various factors must be weighed.
The experts will attempt to help the audience weigh these factors for themselves
by giving them the facts, Dr. Shapiro said.
The presentation will cover various questions that she and Bosma have
been asked in the past. Dr. Shapiro said she will ask for answers from
before putting her answers up on the screen, in order to get a good
We are just trying to answer questions and get some good dialogue going here,” Dr.
Shapiro said. “This talk is based on questions we put together from
a patient perspective and we have answered those questions. We want to ask
the audience questions and get some answers from them.”
LIVE WEBCAST — www.hemophilia.org/inhibitors
The NHF Online inhibitor community will be able to ask questions and interact
with speakers while the forum is in progress during a live Webcast on www.hemophillia.org/inhibitors.
The Web site has several features available to users:
personalized content allowing users to get answers to their own questions;
NHF online communities allowing specific groups to share information and
connect with similarly interested members through chat groups and live forums;
new navigation and search tools.
PROJECT RED FLAG FOCUSES ON BLEEDING
DISORDERS IN WOMEN
The lack of awareness about bleeding disorders among women is staggering,
but NHF is striving to raise public consciousness through a proactive campaign — Project
Red Flag: Real Talk About Women’s Bleeding Disorders.
According to Anna DeSimone, coordinator of Project Red Flag (PRF), the
public awareness campaign and outreach program, designed with the Centers
Control and Prevention, brings attention to the millions of underserved women
affected by bleeding disorders nationwide.
Women tend to tolerate and ignore heavy periods and bruises, but too much bleeding
is not alright,” said DeSimone. “We’re trying to alert women
that such symptoms are not the norm, and after diagnosis simple and effective
treatments are available.”
DeSimone is a faithful advocate for raising awareness about bleeding disorders
among women, as she has been a longtime volunteer with the New Jersey
Hemophilia Association. Her son is a boy with hemophilia, and she is
A recent Harris Interactive survey is testament to this lack of knowledge
among American women. The survey revealed that 91 percent of the women
never heard of von Willebrand disease, noted DeSimone.
Geared to patients, providers and policy makers, PRF will introduce
a number of new offerings during the NHF Annual Meeting.
Rep. Carolyn McCarthy (D-NY) recently reintroduced a concurrent resolution before
Congress to draw attention toward bleeding disorders among women, and a version
applicable for chapters to take to state legislators will soon be available.
A video of Rep. McCarthy’s statement of support, a video news release and
a video highlighting women’s stories will be shown during the 5 to 6 p.m. “Women
with Bleeding Disorders: Project Red Flag Reception and Update” on Friday
in the Venezia room (the women’s stories video will also be available by
visiting www.projectredflag.org). While this session is designed for women-to-women
discussion, men are welcome. This is an opportunity to share information and
experiences and to meet with the PRF team.
Grants totaling $70,000 will be awarded to 12 chapters and associations for outreach
and education during the 4 to 5 p.m. “PRF Toolkit Session” on Friday
in the Venezia room.
For more information about this campaign, DeSimone encourages
Annual Meeting attendees to stop by the PRF booth or visit
www.project redflag.org, as
new features are being added.
CULTURAL UNDERSTANDING KEY TO PROVIDING
America’s cultural mix makes it unique. But cultural differences — unrecognized
and unaccounted for — are also a major stumbling block to proper medical
With that in mind, the Multicultural Task Force (MCTF) will give back-to-back
lectures on the influence cultures can have on a patient’s treatment
experience from both the consumer and physician perspectives. A forum entitled, “Multicultural
Task Force: A Cultural Perspective,” will be held from 11:30 a.m. to
1:30 p.m. on Friday in the Grand America Hotel’s Milano Room.
The first speaker, MCTF member Huma Karimi Siddiqui, along with patient
Felix Garcia, will lecture on the topic of identifying various cultural
that can be problematic in the treatment of bleeding disorders. Siddiqui
said she will also give hard examples of how these roadblocks can be overcome.
Some roadblocks are cultural, some physical and some geographical, Siddiqui
said. Many times the biggest barrier to treatment is the lack of services
to be found in rural areas.
This talk is about communication across cultures and identifying barriers
that are not obvious,” Siddiqui said. “What is the underlying
principle here? Physicians need to be able to communicate with their patients
in order to provide the best treatment options.”
Siddiqui said a study on women’s authority points out that the messenger
can be the problem in some cultures. In the study, a Muslim patient was being
treated by a female doctor, which caused a problem with regard to the patient
and the family following doctor’s orders. Siddiqui explained that in
the Muslim culture, women are not afforded the same respect level in certain
areas that men are. This causes problems when a patient disregards what a
doctor prescribes, Siddiqui said.
The doctor giving the information was a woman, and the family was not following
the prescribed treatment regimen,” Siddiqui said. “Once they
changed to a male a physician, the family started responding and adhering
to the treatment schedule.”
Siddiqui said that, while this may be hard on one’s pride, doctors
must be mature enough to put their own personal feelings aside in many cases
to do what is best for the patient.
This discussion is targeted toward handling whatever diversity the patient
brings with them,” Siddiqui said.
Barriers also arise from assumptions, said Cathy McAdam, an MCTF
member and one of the speaker’s at the forum’s second session.
Many times the problem can be that a Spanish-speaking person can come into
a doctor’s office and speak some English,” McAdam said. “The
doctor then assumes that the patient can understand everything he or she
is asking, and that may not be the case. You simply cannot assume that the
McAdam, Lucy Cabal and MCTF Chairwoman Marisella Trujillo will
speak about “How
to use an interpreter effectively” in the second forum.
Trujillo said that the MCTF wants to make people aware of
the barriers and how to break them down.“
We want people to know about services and how to access them with the help
of our and other organizations,” Trujillo said. “If a patient
walks into a treatment center and they don’t speak English or they
are hearing impaired, an interpreter can be called in to break down that
barrier. Then the service can be provided.”
WHAT ARE YOU MOST LOOKING FORWARD TO DURING THE NHF ANNUAL
MEETING AND WHY?
Sue Ann Hawes, RN
Children’s Hospital, Halifax, Canada
|“ I want to take back as much as I can to my patients.
I’m very interested in the pediatric, inhibitor and summer camp
|“ I’m excited about sleeping in a hotel room and going
to the the youth and adolescent programs.”
Green Bay, WI
“ This is our first meeting without our son, who has severe
We want to go to the gene therapy and hepatitis C sessions.”
IHC Home Care, Salt Lake City, UT
|“ I have hemophilia in my family and I’m a buyer, so I
look forward to the sessions on gene therapy.”
|The codes above each session indicate
that session’s primary audience.
= Chapter Staff
= Chapter Staff Organization
= All Providers (nurses, physicians, physical therapists, social
= Physical Therapists
= Social Workers
= New Families
INDUSTRY-SPONSORED SYMPOSIUM I
The hemophilia management cascade: Optimizing treatment based on
Speakers: Linda Belling, MS, RN, CRRN; Deborah Brown, MD; Marilyn Manco-Johnson, MD; Craig Kessler, MD
The management of hemophilia treatment continues to evolve, with ongoing advances in various strategies including long-term prophylaxis, initiation and discontinuation of prophylaxis, optimal dose and dose intervals and prevention of musculoskeletal sequelae. Each factor must be considered individually when determining appropriate management strategies, and must be adapted based on the changing needs of each patient. This educational symposium will allow for an interactive discussion of the many issues faced by hemophilia healthcare professionals, patients and their families on a daily basis.
Sponsored by Wyeth
INDUSTRY-SPONSORED SYMPOSIUM II
Prophylaxis in von Willebrand disease
Speakers: Thomas Abshire, MD; W. Keith Hoots, MD; Barbara Konkle, MD; Jennifer Maahs, MS, PNP
This symposium will focus on the issues related to prophylactic treatment in von Willebrand disease (VWD patients). Several top healthcare professionals will present on topics such as treating affected joints, female treatment issues and the benefits and risks of prophylactic treatment. Healthcare professionals, as well as patients and families, can use this opportunity to hear first-hand about prophylaxis in VWD and to discuss their own experiences and concerns.
Sponsored by Aventis Behring
PHYSICAL THERAPISTS NETWORKING BREAKFAST
All physical therapists are welcome to meet and eat with colleagues
at this informal networking breakfast.
FUNDRAISING BREAKFAST FOR CHAPTERS
Speaker: Patricia Pollok, NHF Director of Resource Development
Join the staff of NHF’s Development Department to discuss
national and local fundraising efforts. This breakfast will provide
an opportunity to meet NHF development staff and better understand
how to utilize their expertise in your local fundraising efforts.
Many Stories, One Voice will
be vividly illustrated through the words and images of many
diverse members of this community. Special guest Ben Shuldiner
will tell us his story as the youngest principal who heads his
own innovative school—the High School for Public Service.
Ben has hemophilia
B. Join us for this uplifting look at our top celebritites—the
men, women and children affected by bleeding disorders and for
inspirational performances by Native American dancers and a chorus.
Sponsored by American Red Cross
This special check-off session is designed for physical therapists
who wish to complete training for the CDC Universal Data Collection
(UDC) Musculoskeletal Measurements.
BLEEDING DISORDERS 101: ASK THE PANEL OF EXPERTS
C NF N
Moderator: Debbi Adamkin
Speakers: Debbie de la Riva; Jeffrey Kallberg, PT; Roshni Kulkarni,
MD; Corey Parker
After a brief, creative animation depicting the basics of bleeding
and clotting by Dr. Kulkarni, the panel will answer questions from
parents. Areas covered will include: dealing with the diagnosis
of a bleeding disorder in your child, treatment options, sports,
prophylaxis and rare bleeding disorders.
Sponsored by Wyeth
CREATIVE SOCIAL WORK PROGRAMMING
Speakers: Chloe Becca, MS, MA; Mavis Harrop, MSW; Susan Kocik, MSW; Edward Kuebler, LMSW, ACP; Danna Merritt, MSW; Goldie Mulak, MSW; Diane Standish, MSW; Carol Stauffer, LSW, ACSW; Dawn von Mayrhauser, MSW
This session will present new programs and strategies designed and
implemented by social workers from HTCs here and abroad.
Sponsored by Aventis Behring
PEDIATRIC THROMBOPHILIA AND ANTICOAGULANTS FOR CHILDREN
Speaker: Marilyn Manco-Johnson, MD; Guy Young, MD
This session will review the inherited risk factors for thromboembolism
in children. Diagnostic studies and current recommendations for
anticoagulation in infants and children will be outlined.
ASK THE EXPERT: VON WILLEBRAND DISEASE
Speakers: Andra James, MD, MPH; Andrea
Lukes, MD, MHSc
Women with von Willebrand disease will have the opportunity to address two noted obstetricians/gynecologists who
direct the Women’s Hemostasis and Thrombosis Clinic at Duke
University. One expert is also a woman with von Willebrand disease.
After a brief introduction by the physicians, the audience’s
questions will guide and create the session.
MULTICULTURAL TASK FORCE (MCTF): A CULTURAL PERSPECTIVE
C SW NF
Speakers: Felix Garcia, Huma Karimi Siddiqui
Diverse cultural beliefs, values and traditional practices in relation
to bleeding disorders will be described. A focus will be on barriers
encountered by various individuals as well as on the empowering experiences
of these representatives of diverse cultures.
C CS NF
Speakers: Shannon Penberthy
Learn how to improve your relationship with state officials and work to address issues for bleeding disorder patients in your state.
MANAGEMENT OF MUSCLE BLEEDS: A NURSING AND PHYSICAL THERAPY PERSPECTIVE
Moderator: Jim Munn, RN, MS
Speakers: Ruth Mulvany, MS, PT; Jan Tuller, RN, MPH
The physiologic process of muscle bleeds, the signs and symptoms associated with muscle bleeds and complications of severe bleeds will be reviewed. Important to the discussion are: recognition of a bleed and nursing and physical therapy issues in management of acute and chronic bleeds.
HOW TO USE AN INTERPRETER EFFECTIVELY
Speaker: Lucy Cabal
This session will examine how to recognize the communication barriers
in medicine, identify approaches for bridging language gaps and acquire
the skills and know-how to work with interpreters.
EXHIBIT HALL LUNCHEON
Join us in the Exhibit Hall for a complimentary lunch and a chance
to enjoy and visit our spectacular exhibits.
Luncheon sponsored by Novo Nordisk Pharmaceuticals, Inc.
POSTER SESSIONS/MEET THE AUTHORS
Meet the authors of important, cutting-edge research. Make your
own assessment of which top 20 abstracts will be published in Haemophilia,
the international journal of the World Federation of Hemophilia.
C N F
Unique opportunities to talk informally with others whose situation
and discussion interests are the same as yours. You can select from:
|Parents of Children 4-12
|Parents of Children 13-17
||Jeanne Lusher, MD,
Roshni Kulkarni, MD and Jane Smith
|Girls and Women
||Paula Elbirt, MD, Andra James, MD, and Andrea Lukes, MD
|Grief and Loss
||Elizabeth Fung, MSW, PhD
||Steven Faust, Calvin Price
NURSING LUNCHEON: DEVELOPING A DISEASE-SPECIFIC UTILITY INSTRUMENT FOR HEMOPHILIA
Speakers: Martha Hare, PhD, RN; Jennifer Maahs, MSN, PNP; Joan
Wasserman, RN, MBA
Quality of life (QoL) utility measures and their import for persons
with bleeding disorders will be the focus of discussion.
Age and severity of disease variables will be considered as current
trends in QoL measures. Dr. Leveck, Deputy Director of the National
Institute of Nursing Research, will discuss NINR’s current
Luncheon Sponsored by American Red Cross
CSO LUNCHEON AND BUSINESS MEETING
Join us for a networking luncheon for staff, volunteers and board
members of the chapters of NHF.
Luncheon sponsored by Novo Nordisk Pharmaceuticals, Inc.
NHF RESEARCH FELLOWS LUNCHEON
Moderator: W. Keith Hoots, MD
This special session provides an opportunity for all healthcare
providers and researchers to meet with and discuss the work of NHF-funded
research fellows over lunch.
INHIBITORS--PORTS AND PROPHYLAXIS
Speakers: Kathy Bosma, RN; Amy Shapiro, MD
Speakers will discuss issues relevant to the treatment of inhibitors.
Prophylaxis will be emphasized. The use and complications of central
venous access devices will be discussed. This session will also
be carried live on the new NHF online inhibitor community on hemophilia.org.
Luncheon sponsored by Novo Nordisk Pharmaceuticals, Inc.
SOCIAL WORK RESEARCH
Speakers: James Knappe Langworthy, MS, LICSW; Karyn Walsh, MSW;
Kelly Williams, MSW, LCSW
Using featured research projects funded by the NHF Social Work Excellence
Fellowship, the session will review development, implementation
and outcome evaluation in social work research.
NEW HRS at NHF
HEMOPHILIA RESEARCH SOCIETY (HRS) CLINICAL UPDATE
Moderator: Roshni Kulkarni, MD
Speakers: Thomas Abshire, MD; Jorge Di Paola, MD; Amy Dunn,
MD; Eric Grabowski, MD, ScD
Members of HRS will provide:
• An overview of HRS and of
all agencies involved in researching bleeding disorders and working
toward a common goal—Centers for Disease Control and Prevention, NHF, NHLBI,
HRSA (Thomas Abshire, MD, Emory University)
• A discussion of early target
joint intervention in hemophilia (Amy Dunn, MD, Emory University)
• A presentation on risk-adapted
therapies for venous and arterial thrombosis (Eric Grabowski,
MD, ScD, Harvard Medical School)
• An understanding of the variability
of von Willebrand disease (Jorge Di Paola, MD, University
of Iowa, first HRS hemostasis grant recipient)
ANATOMY AND KINESIOLOGY OF THE KNEE
Speaker: Mary Beth Deering, MD, PT
The anatomy, bio-mechanics and pathologies of the knee will be the
focus of this mini-symposium for physical therapists working with
bleeding disorders patients.
GROUP THERAPY FOR PRE-SCHOOL CHILDREN WITH HEMOPHILIA
Speakers: Gaby Golan, PhD; Gina Goldstein,
The basis of this discussion will be how to develop the appropriate
dynamics and effectively manage a group of preschool children with
hemophilia in the group therapy context.
PROJECT RED FLAG TOOLKIT SESSION
Moderator: Ann Marie Nazzaro, PhD
Speaker: Anna De Simone
Meet the recipients of this year's Project Red Flag grants. Learn their winning techniques for outreach and education. Polish your skills with the PRF toolkit and materials.
MAKING YOUR LIVER LAST A LIFETIME: CO-INFECTION FROM TREATMENT TO TRANSPLANTATION
Speakers: Michael O’Connor, CMD;
With the efficacy of antiretrovirals for HIV treatment, more co-infected
persons with hemophilia are finding that progressive liver disease
is their most pressing health concern. This is a first-hand patient
account of end-stage liver disease and transplantation highlighting
current medical interventions, availability and accessibility of
transplantation programs, as well as the best ways to work within
the medical community to navigate this system.
WOMEN WITH BLEEDING DISORDERS
PROJECT RED FLAG RECEPTION AND UPDATE
Speaker: Anna DeSimone; Ann-Marie Nazarro,
This session is designed for women-to-women discussion, but men
are also welcome. This is an opportunity to share information and
experiences and to meet the team of NHF’s campaign, Project
Red Flag: Real talk about women’s bleeding disorders. The
opening (5-5:30) will be an update of PRF activities and a chance
to meet NHF’s PRF partners, CDC and Aventis.
NEW AND EMERGING LABORATORY TESTS
Speaker: B. Gail Macik, MD
The focus of this session is on new assays and tests available for
diagnosing bleeding disorders. It will describe the limitations
of current tests, the advantages and disadvantages of new tests
and tests proposed for the future.
DENTAL CARE/DENTAL BLEEDING: THE PAST,
THE PRESENT, AND THE FUTURE. HOW WILL CHANGES IN DENTISTRY AFFECT
PERSONS WITH BLEEDING DISORDERS?
Moderator: Chris Guelcher, MS, RNCS, PNP
Speaker: Karen Ridley, RDH, MS
This Dental Care/Bleeding 101 will cover:
• How to manage everyday issues
with dental care
• Dentistry today—how
it differs from the past and where it’s going in the future
• Why dentistry is important
to overall health
• Are there special oral health
issues for women?
• Specific dental issues for
patients with bleeding disorders
• Contraindicated procedures
for patients with bleeding disorders
• Helpful hints for dealing
with bleeding complications
MANY STORIES, ONE VOICE: REMBERANCE SERVICE
This is an opportunity for all of us to reflect on and remember
departed heroes, living heroes, our collective history and to
look forward together at what the future holds. All ages are welcome.