Daily News: FRIDAY highlights
updated 11/8/03

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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 page.

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 the audience before putting her answers up on the screen, in order to get a good discussion going.
“ 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.”

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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.

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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 for Disease 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 symptomatic carrier.

A recent Harris Interactive survey is testament to this lack of knowledge among American women. The survey revealed that 91 percent of the women polled had 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.

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CULTURAL UNDERSTANDING KEY TO PROVIDING CORRECT TREATMENT

America’s cultural mix makes it unique. But cultural differences — unrecognized and unaccounted for — are also a major stumbling block to proper medical treatment.
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 barriers 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 patient understands.”

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.”

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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 sessions.”
   

Alex Tahi
Philadelphia, PA

“ I’m excited about sleeping in a hotel room and going to the the youth and adolescent programs.”
   

William Varney
Green Bay, WI


“ This is our first meeting without our son, who has severe hemophilia. We want to go to the gene therapy and hepatitis C sessions.”
   

Joan Ryan
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.”
   

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The codes above each session indicate that session’s primary audience.

 A 
 C 
 CS 
 CSO 
 MD 
 P 

 P 
 N 
 SW 
 NF 

= All
= Consumers
= Chapter Staff
= Chapter Staff Organization
= Physicians
= All Providers (nurses, physicians, physical therapists, social workers)
= Physical Therapists
= Nurses
= Social Workers
= New Families

INDUSTRY-SPONSORED SYMPOSIUM I
The hemophilia management cascade: Optimizing treatment based on patient needs

 A 
7:00am-9:00am
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

 A 
7:00am-9:00am
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
Outcomes Report
 PT 
7:00am-9:00am
All physical therapists are welcome to meet and eat with colleagues at this informal networking breakfast.

FUNDRAISING BREAKFAST FOR CHAPTERS
 CS 
7:30am-9:00am
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.

OPENING SESSION
 A 
9:30-11:00am
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

CDC/UDC CHECKOFF
 PT 
11:00am-5:30pm
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  
11:30am-1:30pm
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
 SW 
11:30am-1:30pm
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
 MD 
11:30am-1:30pm
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
 C 
11:30am-1:30pm
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 
11:30am-12:30pm
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.

STATE-BASED ADVOCACY
 C   CS   NF 
11:30am-12:30pm
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
 RN   PT 
12:30pm-1:30pm
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
 A   NF 
12:30pm-1:30pm
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
 A 
1:30pm-3:00pm
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
 P   NF 
1:30pm-3:00pm
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.

Rap Sessions
 C  N F 
1:30pm-3:00pm
Unique opportunities to talk informally with others whose situation and discussion interests are the same as yours. You can select from:

Session: Facilitator:
Infants Cazandra Macdonald
Parents of Children 4-12 Pat DeRatto
Parents of Children 13-17 Ed Jones
Inhibitors 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
Adult Men Steven Faust, Calvin Price

NURSING LUNCHEON: DEVELOPING A DISEASE-SPECIFIC UTILITY INSTRUMENT FOR HEMOPHILIA
 RN 
1:30pm-3:00pm
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 activities.
Luncheon Sponsored by American Red Cross

CSO LUNCHEON AND BUSINESS MEETING
 CSO 
1:30pm-3:00pm
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
 P  
1:30pm-3:00pm
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
 C   NF 
3:00pm-5:00pm
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
 SW 
3:00pm-4:00pm
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

 MD 
3:00pm-5:30pm
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
 PT   C 
3:00pm-5:00pm
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
 SW 
4:00pm-5:00pm
Speakers: Gaby Golan, PhD; Gina Goldstein, MSW
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
 C 
4:00pm-5:00pm
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
 C 
5:00pm-6:00pm
Speakers: Michael O’Connor, CMD; Debby O’Connor
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

 C 
5:00pm-6:30pm
Speaker: Anna DeSimone; Ann-Marie Nazarro, PhD
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
 MD 
5:30pm-6:30pm
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?
 MD   RN 
5:30pm-6:30pm
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
 A   NF 
6:30pm-7:30pm
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.

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