HemophiliAction - Hemophilia Foundation of Southern California

HemophiliAction - Hemophilia Foundation of Southern California

HemophiliAction
A publication of the Hemophilia Foundation of Southern California Volume 8 • Issue 3 • Spring 2013
Smiles for Spring
Today, give a stranger one of your smiles.
It might be the only sunshine he sees all day.
Hemophilia Foundation
of Southern California
6720 Melrose Avenue
Hollywood,CA 90038
Tel: 323-525-0440
Fax: 323-525-0445
[email protected]
www.hemosocal.org
HemophiliAction
HemophiliAction
is published quarterly by:
The Hemophilia Foundation of
Southern California
DISCLAIMERS
The Hemophilia Foundation of Southern
California (HFSC) does not endorse any
particular pharmaceutical manufacturer or
home care company.
PLEASE NOTE: The companies whose
advertisements are listed herein have
purchased this space, and are NEVER
provided with members’ names, addresses
or any other personal details. Paid
advertisements should not be interpreted
as a recommendation from HFSC, nor do
we accept responsibility for the accuracy of
any claims made by paid advertisements.
Since we do not engage in the practice
of medicine, we always recommend that
you consult a physician before pursuing
any course of treatment.Information and
opinions expressed in this publication are
not necessarily those of the HFSC, or of its
editorial staff.
Material printed in this publication may
be reprinted with express prior written
permission from the Executive Director.
Board of Directors
Tamara Kato, President
Judy Mangione,
Secretary Jorge Catedral,
Advocacy Chair
Michael Franzen,
Treasurer Dr. Richard Metz,
VP Fundraising
Doris Quon, MD,
Medical Representative
Staff
Linda Corrente, Executive Director
Charles J Cook, Social Worker
Andressa Rogers,
Special Events and Programs Coordinator
Jori Stern,
Special Events and Programs Assistant
Special Thanks
Angie Yanez, Spanish Translation
Linda Corrente, Editor
Mark Elias, Art Director
Hemophilia Foundation of
Southern California
Executively Speaking
Education is Key.
Today, Tomorrow and Forever, the bleeding disorders community and the Hemophilia
Foundation is steadfast in sharing information, connecting people, and lending a hand of
kindness to one another.
Be proactive and share your experiences with one
another. Be proactive and attend as many events
as you can. Be proactive and communicate your
needs. Call us, write or e-mail us! We may not be
the organization that has all the answers or all the
programs to assist everyone, however let us work to
direct you to the organization or individual that may
have the answers for you.
Share your experiences. Please send us your articles
to publish in our newsletter. Attend our events and
others will learn from you. Can you imagine how
many times that I have heard from a young mother,
that she learned so much from another mother? And
Fathers too, they seek to learn from one another.
Do you think it is important that your teenager
attend our events? Yes, it is! Please tell them that
they are positive role models for parents and young child with hemophilia and to those
that are not quite sure how they will survive through all of life’s challenges living with a
bleeding disorder. How easy can it be to do so much good for another human being? You
just need to show up! Your presence means everything to those questioning their future.
Think about it, be proactive and lend a hand of kindness to one another. You can do it by
just being present. Smiles are supportive signals of acceptance and love. How powerful
a smile can be! Our Foundation staff and Board of Directors work to ensure smiles. My
joy is to see our kid’s smiles at our programs and events and share them with you in our
newsletter.
For 2013, we are planning many events for you to enjoy and attend. Saturday, May 25,
is our Family Information Day. Please save the date and plan on attending. Additionally,
we are very excited to announce that our Walk will be at the beach this year, in Santa
Monica. Get involved! Plan a family and friends day at the beach. Leave your footprint
in the sand and walk that extra mile to support the Hemophilia community.
We always welcome ideas! Send them to us! We are also looking for places to host our
events, and thoughts on what you want to learn. Share your experiences, voice your
concerns and be on our program or advocacy committee. Be in touch! And remember to
update your contact information with us.
Education is the key to empowering yourself. Be an active participant in your education
and contribute to a world of change.
We are here because we care!
Warmest Regards,
6720 Melrose Ave.
Hollywood, CA 90038
Tel: (323) 525-0440
Toll Free: (in CA only)(800) 371-4123
Fax: (323) 525-0445
E-mail: [email protected]
Web: www.hemosocal.org
2
HemophiliAction
Linda Corrente
Executive Director
Hablando Ejécutivamente
La Educación es la Llave
Hoy, Mañana y para siempre, la comunidad con enfermedades
sanguíneas y la Fundación de Hemofilia están unidas en
compartir información, conectar con otros y dar una mano de
ayuda y caridad de uno a otro.
Sea active y comparta sus experiencias con uno al otro,
sea active y participe en muchos eventos y comuniqué sus
necesidades. Llámenos, escribanos. Puede que no seamos
la organización que tiene todas las respuestas o todos los
programas para asistir a todos, pero denos la oportunidad de
dirigirlo a una organización o individuo que le puede ayudar.
Comparta sus experiencias: por favor envíenos sus historias
para poder publicarlas en nuestra revista. Participe en nuestros
eventos y otros pueden aprender de usted. Como se puede
maginar, muchas veces que escuchamos de una madre joven,
de cuanto aprendió cuando escucho a otro padre o madre de un
hijo mayor. Padres también, busque en aprender de sí mismos.
Usted cree que es importante que su joven participe en los
eventos. Si, si lo es. Por favor dígales que ellos son personas
positivas como modelo para sus padres y jóvenes con hemofilia.
Para aquellos que no saben cómo van a sobrevivir a través de
los cambios de la vida y vivir con una enfermedad sanguínea.
Su presencia significa más que todo para aquellos preguntando
sobre el futuro. Que tan fácil puede ser en ayudar a otro
humano. Solo necesita participar. Piénselo, al ser activo usted
le presta una mano de cariño o otra persona, solo con su
presencia.
Los empleados de la fundación y miembros de la junta directiva
trabajan para asegurarse que sonrían. La sonrisas son signos
de apoyo y aceptación y amor. Que tan poderosa es una
sonrisa. Mi felicidad es de mostrar las fotos de los niños y sus
sonrisas en nuestros programas y eventos. Envienos sus fotos e
historias. Siempre escuchamos ideas, envíelas. También estamos
buscando lugares en donde tener eventos. Exprese sus ideas
y sea parte de nuestro comité de programas o apoyo. SI tiene
alguna pregunta o preocupación, por favor llámenos. Ayúdenos
al enviarnos su información de contacto para añadirlo en
nuestra lista de correo.
Para el 2013, estamos planeando muchos eventos para que
disfruten. El sábado mayo 25, e nuestro día de información
familiar. Por favor guarde el día y planee en participar.
Estamos contentos de que la caminata será en la playa este ano.
Involúcrese y planee un día con familia y amigos en la playa.
Que sensación tan positiva la de caminar una milla mas para la
comunidad hemofílica con arena en los pies, la briza de la playa
y el sol del Sur de California en la cara.
La educación es la llave sea active y participe en su educación.
Estamos aquí porque nos preocupamos.
Linda Corrente
Directora Ejecutiva
Introducing CHPS!
We are pleased to announce the creation of a new program that
will benefit all of our members and our community. California
Hemophilia Program Support Inc. (CHPS), is a new nonprofit
organization designed to recognize top performing home care
services to our community. It will vet and certify home care
companies who continue to meet performance quality criteria
set forth by the Hemophilia Foundation of Southern California
(HFSC), and performance standards as defined in the State of
California’s new law to protect the hemophilia community.
With so many home care companies, HFSC recognizes the
task of finding a good home care company can be daunting.
Families are already challenged with so much to learn, and most
don’t have time to determine what home care companies meet
minimum standards or have the expertise to ensure their home
care needs are met. This is why HFSC decided to create CHPS,
patterned off the successful HPPS program in Pennsylvania.
Qualifying home care companies need a good history of serving
the community of bleeding disorders; demonstrate a working
knowledge of hemophilia and bleeding disorder products
and care, offer a full range of services within the community,
have inventory in stock to provide service, supply a 24 hour
toll free number that will make pharmacists and shipments
of medication available so that members can access their
medication at any time, and provide for the fact that despite
provided expected costs be expected to inform the consumer of
any changes to costs, but make an effort to provide treatment
and costs at lowest possible price.
They must also fully comply with AB389, Mitchell existing law.
The Holden-Moscone-Garamendi Genetically Handicapped
Person’s Program, requires the Director of Health Care
Services to establish and administer a program for the medical
care of persons with genetically handicapping conditions,
including hemophilia. This bill would impose specified
requirements on providers of blood clotting products for home
use, as described, whose products are used for the treatment
and prevention of symptoms associated with bleeding disorders,
including all forms of hemophilia. This bill would require the
California State Board of Pharmacy to administer and enforce
these provisions.
So far, there are four companies to be certified in the CHPS
program, Brothers Healthcare, Factor Support Network,
BioRx and National Cornerstone.
Great changes are coming and the introduction of the CHPS
program will help us continue to fulfill our mission to improve
the quality of life and build community for families and
individuals living with hemophilia or other bleeding disorders.
HemophiliAction
3
Join our family at Factor Support Network,
and see for yourself why our clients are clients for life.
FSN is an in-network provider for GHPP, CCS and Tri-Care.
CONTACT Client Services Representatives in Your Area
Randy DeSantis 805-402-5952
[email protected]
4
HemophiliAction
SURROUND YOURSELF
WITH SUPPORT
RODÉATE DE APOYO
•Homefactordelivery
•Kids’books
•Inhibitorprogram
•educationalworkshops
•Trainednursingsupport
•Peerconsumeradvocates
•Reimbursementspecialists
•Infusiontraining*
•Resourcelibrary
•Monthlynewsletter
•Scholarshipprogram
•Entregadefactoradomicilio
•Librosparaniños
•Programadeinhibidores
•Talleresdeeducación
•Apoyodeenfermeríacapacitado
•Defensoresdelosconsumidores
•Especialistasdereembolso
•Entrenamientoparalainfusión*
•Recursosdebiblioteca
•Boletínmensualdenoticias
•Programasdebecas
* As ordered by your physician.
* Como Ordene su Médico
866.44.BIORX | www.biorxhemophilia.com
Call Your BioRx Representative Today! Llame hoy a su Representante de BioRx
Patricia Medranda • 619.433.9405 • [email protected]
HemophiliAction
5
6
HemophiliAction
We are pleased to be recognized as
a top performing service provider to
the bleeding disorder community in
Southern California.
• Weadvocateonbehalfofpatients
• Wesimplifyaccesstoproduct
• Weprovideinsuranceassistance
• Individualpackaging&shipping
arrangements
• AssistanceforSpanishspeakingpersons
• CHPSCertifiedwithrecognitionfor
qualityperformancestandards
Callyourlocalrepresentative:
ForAdvancedSpecialtyHealthcare
ForHeartwoodHealth
WagnerLemus
310.291.7279
BrandonWalend
909.208.9485
GilbertUrsulo
949.554.9182
JonathanLemus
213.793.6021
BarbPileriRN
MichelleV.Gilmore
ClinicalSupportSpecialist RN,MSN,NP
809.490.6963(cell)
HeartwoodHealth
510.339.1513
510.206.3507(cell)
www.nc-hs.com•[email protected]
Toll-Free:1.877.616.6247•Fax:1.877.777.5717
24747RedlandsBlvd.,SuiteB•LomaLinda,CA92354
HemophiliAction
7
THANK YOU FOR YOUR GENEROSITY
2012 Donors to March 15, 2013
“There is no exercise better for the heart than reaching down and lifting people up.”― John Holmes
Diamond Sponsor
($80,000 & Above)
Novo Nordisk
Titanium Sponsor
($50,000 - $79,999)
Bayer Healthcare
Baxter BioScience
Platinum Sponsor
($25,000 - $49,000)
Biogen Idec Hemophilia
Gold Sponsor
($20,000 - $24,999)
$500 - $999
Baxter International
Bertha A. T. Guerrero
BioScript
CF Marketing
Hueneme Family
Pharmacy
Joan Parker
Joe Pugliese
Richard & Jane Metz
Richard Hearn
Sempra Energy
Pierre B. Nadeau
Stephen Trentacoste
The 6740 LLC
Factor Support Network
$100 - $499
Red Chip Investment
Group
Allstate Giving
Amanda Ewing
Amy Shelton
Angela Yanez
Anna Mellor
Becky Cleavenger
Brenda Merino
Brinker International
Calvin R. Scott
Camille Lewis
Cheryl Robbins
Christine Sauer
Christine T. Mathews
Cindy Hovarth
Clem Adkins
Community Health
Charities
Craig Tupy
Daniel Ibarra
David G. Jamieson
Deborah Joslyn
Deborah Maust
Dixie Olson
DJ Blanchette
Pfizer
CSL Behring
Silver Sponsor
($15,000 - $19,999)
Catherine Leone & Keith
Lehmann
Bronze Sponsors
($10,000 - $14,999)
Copper Sponsors
($5,000 - $9,999)
Bank of America
Brothers Healthcare
CVS Caremark
Grifols USA
Guided Alliance
Healthcare
Shawn Simmons
Tal Incorporated
$1,000 - $4,999
Aida Leone & Philip
Leone
BioRX
Children's Hospital Los
Angeles
Coram Hemophilia
Services
8
Darlene Whitney
Homecare For the Cure
Kedrion
National Cornerstone
Healthcare Services
Octapharma
Orthopaedic Hospital
Los Angeles
Premier Hemophilia
Care
Rudi and Berta Schulte
Angels
Rudi Schulte Family
Foundation
Walgreens Hemophilia
Services
HemophiliAction
Dominick Pizzutello
Donna Pett
Duncan Banks
ECHO
Eddy Rosales
Edmund Merino
Edward D. Gomperts
Elizabeth Kneier
Ellen J. S. Greenberg
Employees
Community Fund of
Boeing California
Eric J. Hardman
Eugene Galen
Federick Clough
Frank & Vivian
Stefkovich
Gavin DiMundo
George Giffen
Glenn Miller
Gwyneth Pett
Harriet H. Plunkett
Heather F. Ney
Helen Meyer
Hester Hell
Howard C. Lim
Ian Armstrong
James Berliner
Jane E. Martinez
Jason Hayes
Jeff Gentzler
Jerman Velasquez
Jerry Lee
Jesus Sanchez
Jillian Valdivieso
Joan Shaw
Johnny Ong
Jose J. Jimenez
Joseph Sirgy
Judy Metscher
Karen Lossberg
Karen Sue Meier
Katee Trinh
Kenneth Goebel
Kevin Shaughnessy
Lauren Salinas
Linda Ostoja
Lois McKeown
Luisa Sanchez
M. Hagen
Marcos Navas
Margaret Pett
Maria Medranda
Maria Servello
Mark R. Gander
Mary Betzler
Mary Compton
Mary J. Wallis
Meldon C. Levy, MD
Michael Bryant
Michael Call
Michael Chaikin, MD
Michael Kelly
Nadia Ewing, MD
Nicole Clary
Nita Steiniger
Norma Rodriguez
Norman Haley
P.M. Reardon
Patricia Gehrke
Patricia Lee
Patricia Searcy
Pauline Wong
R. Storkersen
Ralph Jr.
Randa B. Wahbe
Richard Elias Bukata
Richard M. Stokotelny
Rick Crlson
Robert CPA
Robert M. Bard
Rod Blair
Roger Wilkinson
Rosaby Lamm
Russell Bartoli
S. Ellis Renwick
Samuel Wang
Sandra Guerrero-Bazan
Sandra S. Blad
Sandra Schmidt
Sandra Wood
Sandy Delhori
Santa Barbara City
Firefighters Charitable
Fund Inc
Sara Gutierrez
Saul Md
Sean Cauvel
Shawn Guy
Sindee Riboli
Stephen A. Blewett
Steven Honma
Tanya Klaslo
Thelma Rosales
Theodoro Fischer
Theresa Hays Horner
Thomas V. Smith
Tim Cutress
Tim Heidt
Trilogy Financial Services
Veronica Lorenzana
Virgina Binford
Walter Johnson
Wendy Wong
Wilmer & Judith Pittman
Xiaohuan Chen
Donor Recognition 2012 & 2013
In Memory & In Honor Donations listed are from January 2012 to March 15, 2013
Reconocimiento de Donanes 2012 & 2013
Donaciones lista son de enero 2012 a 15 de marzo 2013
In Memory
Russell Gibbons
Bertold and Margaret Schwall
Verne Hays
Theresa Hays-Horner
Mike & Stiirling Rose
Benjamin and Pamela Rose
Kevin Lurie
Betty D. Lurie
Nick, Bobbie & Phil Green
Gerry Green
Fran and Don Pearson
Mark and Renee Gander
Polly and Joel Lewitz
Lori Schifrin
Michael Lawrence Schmidt
Mary Jane Wallis
Sandra S. Schmidt
Donnie Butler
Diane Haun
Natham Mermilliod
Duncan & Gurka Banks
Baalah F. Drooks
Gerry Green
Michael Metz
Irving & Muriel Metz
Philip Leone
Matthew Cilderman
Mary Chasse
Steven Delpidio
David & Diane
Landrum
Lauren Lehmann
Patricia Lehmann
Dian Rousselo
Tal, Incorporated
Mark & Philip Leone 29th
Memorial Golf and Tennis
Tournament
Edward L. Allum
Scott Caswell
David Hoag
Edward Kemp
Patricia Lehmann
Aida Leone
Catherine Leone & Keith
Lehmann
Helen Lewis
John A. Mancina
C F Marketing (Howard
Feldman)
Ed Meenan
Tim Ottinger
Pinnacle Sales
Michael A. Sajecki
Cardinal Sales (Keith Selby)
Tal, Incorporated (Aaron Tal)
Alan Taylor
Rosemary Thomas
Stephen Trentacoste
Laura Yocom
Tim Hill
Tap’s Fish House & Brewery
Howard Lehmann
Terri Hall/Kalisto Spa
Kathy Pham
In Honor
Blaine R Scott
Calvin R. Scott
Loren Redmond
Patricia Carter
Erik Evanson
Sandra S. Blad
Erik E. Johnson
G. Beverly Bergmann
Osvaldo Figueroa
Bertha Portillo
Richard Katz
Judy & William Metscher
Ruth J Wolf
Todd W. Pittman
Wilmer & Judith Pitman
Camp Blood Brother and Sisters 2012
Alfredo Lamm
Rosaby Lamm
Erik Evanson
Sandra S. Blad
Craig Ferrero
Randa B. Wahbe
Alona Metz streches for the Hemophilia Walk
HemophiliAction
9
Holiday Happiness Hemophilia Style
As we celebrate the beginning of a new year, we would like to thank
our community members for attending our Holiday Parties in 2012.
With the help of our kind and most generous sponsors we were able
to host four different Holiday Parties!
The Orange County community gathered at Zito’s Pizza to greet
Santa Claus as he distributed bags filled with Christmas gifts to the
children! We extend our heart-felt thank you to our magnificent hosts
Aida Leone, Catherine Leone and Keith Lehmann.
The High Desert and the Santa Barbara communities enjoyed a more
intimate party. Betsy and CJ Cook, the hemophilia power couple,
helped organize the party in Victorville and the gift giving for the
children.
Susan and Miles Cole hosted a wonderful party in Santa Barbara.
Santa Claus made a surprise appearance with gifts in hand and the
children learned some magic tricks with Tom “The Magic Man.” We
can never thank the Cole Family enough for opening their home and
welcoming our community members.
The Los Angeles area community went bowling with Santa Claus.
We gathered at the All Star Lanes Bowling Center for some Holiday
joy, pizza and hot dogs, a visit with Santa Claus, bowling and more
bowling. We thank the support of sponsors like CSL Behring, Home
Quality Infusion, Bayer, Baxter, Novo Nordisk, Factor Support
Network, Bioscrip and Kedrion for helping us make this holiday more
joyful to our community members.
We also want to thank the California Highway Patrol, the Toys for
Tots Foundation, Quality Home Infusion and Baxter for working
hard on organizing toy drives and granting our requests for the
holiday parties. A special thank you to PSDSI Lisa Rosales, CHP,
for donating toys and joining us at our party in Los Angeles. Officer
Rosales is truly dedicated to making an impact in the world and
we are pleased to be one of the beneficiaries of her hard work and
dedication.
Felicidad de los Dias Festivo A Estilo Hemofilia
Mientras celebramos el comienzo del ano, les queremos agradecer a
miembros de la comunidad por participar en las fiestas navideñas del
2012. Con ayuda de patrocinadores de comida pudimos ser anfitriones
de cuatro fiestas navideñas!!
La comunidad del Condado de Orange, se reunió en Zito’s Pizza para
saludar a Santa Claus minestras distribuía bolsas llenas de regalos
para los niños. Le extendimos nuestro agradecimiento a nuestros
grandes anfitriones Aida Leone, Catherine Leone y Keith Lehman.
En el Desierto y Santa Barbara disfrutamos de una fiesta más intima.
Betsy y CJ Cook, la pareja de poder en hemofilia, ayudo a organizar
una fiesta en Victorville y organizaron la distribución de regalos para
los niños.
Susan y Miles Cole fueron anfitriones de una gran fiesta en Santa
Barbara. Santa Claus sorprendió con participación de regalos y los
niños aprendieron unos trucos de magia con Tom el “Magic Man.”
Nunca les podemos agradecer suficiente a la Familia Cole por abrir su
hogar y dar la bienvenida.
La Comunidad de Lo Angeles vinieron a jugar boliche con Santa
Claus. Nos reunimos en All Star Lanes Bowling para disfrutar pizza,
y perros calientes y una visita de Santa Claus, jugando boliche y mas
boliche. Les queremos agradecer como CSL Behring, Home Quality
Infusion, Bayer, Baxter, Novo Nordisk, Factor Support Network,
BioScrip y Kendrion por ayudarnos en hacer los días festivos más
felices para miembros de la comunidad.
También le queremos agradecer al California Highway Patrol y los
juguetes de Toys for Tots. Quality Infusion y Baxter por trabajar
juntos en organizar recolección de juguete y tenerlos por nuestras
petiticiones para las fiestas. Un agradecimiento especial a oficial CHP
Lisa Rosales por venir a nuestra fiesta de los Angeles. Oficial Rosales
es verdaderamente dedicada en hacer un gran impacto en el mundo
y estamos orgullosos de ser los beneficiaros de todo su trabajo y
dedicación.
Holidays Happenings - Orange County
Christmas party, Orange County
Orange County Holiday Party host, Aida Leone with Irene Emerson (past HFSC president), Catherine Leone and Linda Corrente
10
HemophiliAction
Matthew is happy telling Santa what he wants for Christmas
Esme, Jacclyn and Dezy Morris pose with Santa Claus at Zito’s Pizza
Families enjoy the visit with Santa Claus
Santa barbara
Magican entertains Children at Santa Barbara holiday party
Frank Corrente couldn’t wait to meet the Franzen’s newest addition to their family
Stiel Ruiz chats with Santa
Special guest Santa and #1 elf arrive at the party
Guests gathered for a photo with Santa and his #1 Elf
Los Angeles
Santa Claus asks the girls what they want for Christmas
Linda Corrente, Kate Compton and Andressa Rogers also want to tell Santa Claus
what they want for Christmas
Community members get ready for some bowling action
PSDSI Rosales, CHP. Our special thanks to her for donating toys and joining us
at the holiday party
Matthew O’Neil and Sheldon Thompson stop for a photo with Linda Corrente
before hitting the bowling lanes
HemophiliAction
11
Research & Education Day
“Education is the most powerful weapon which you can use to change the
world.” Nelson Mandela
It is a brand new year and we have so many great things planned! We
began the year focusing on education as a powerful tool for change. On
February 9, we hosted our Research & Education Day at the Skirball
Cultural Center.
166 community members gathered to learn more about issues such as
the healthcare reform and the hemophilia community as well as selecting
a healthcare plan. Our community members were also able to benefit
from presentations centered on how to encourage early independence
and create a better future for them. Presentations included: “My Life,
Our Future” by Kathleen Casey, Biogen Idec; “Healthcare Reform (The
Affordable Care Act) and the Hemophilia Community” by Christine M.
Jarosz, Bayer; “Selecting a Healthcare Plan” by Elizabeth Stolz, Baxter;
“Today, Tomorrow: Clinical Data and Research Technology” by Jacobo
Leonardi, Baxter BiosScience; “Seven Secure” by Luke Hemming; and
Brothers Healthcare is well represented by Kevin Shaughnessy and his faithful helpers
Karen Arrieta, Bayer, is always ready to answer questions
related to their products
Shawn Guy, Walgreens Infusion Services, supplies a community member with information and giveaways
Gilbert Ursulo and Wagner Lemus representing Advanced
Specialty Healthcare
“Encouraging Early Independence” by Maria Perez, Pfizer.
We would like to thank Novo Nordisk for providing an education grant
to support the event as well as our Title sponsors Baxter, Biogen Idec
and Bayer; our Booth Sponsors; Factor Support Network, Walgreens,
Brothers Healthcare, BioRx and Advanced Specialty Healthcare;
and our Lunch Sponsor Pfizer. These generous contributions helped
make our vision a reality by empowering our community members and
providing them with the knowledge needed to succeed in taking control
of their lives.
Volunteers are instrumental in helping us fulfill our mission to improve
the quality of life and build community for families and individuals living
with hemophilia or other bleeding disorders. This event would have
not been as successful without the help of volunteers like Taylor Frank,
Gerry Green, Lori Murphree, Francesca Pascucci, Amanda Rosales,
Chante Ortiz, and The Art of Elysium.
Linda Corrente is happy to visit with Cayla Kim
Día de Investigación y Educación
“La Educación es una de las herramientas más ponderosas la cual puede
cambiar el mundo.” Nelson Mandela
¡Es un Nuevo año con muchos evento planeados! Empezamos el ano
enfocado en educación como una herramienta ponderosa para cambio. En
febrero 9, tuvimos fortuna de ser anfitriones de un día de Investigación y
Educación en el Skirball Centro cultural.
166 miembros de la comunidad se reunieron para aprender más sobre
tema de la reforma de salud para la comunidad hemofílica y la selección
de un plan médico. Nuestra comunidad también pudo beneficiar de
presentaciones enfocadas en como animar independencias temprano y
crear un futuro mejor para los jóvenes. Las Presentaciones incluyeron:
“Mi vida, NUestro Futuro.” por Kathleen Casey, Biogen Idec; “Reforma
Medica (El Acto de Cuidado Asequible) y la Comunidad Hemofílica.”
por Christine M. Jarosz, Bayer; “Seleccionar un Plan de Salud.” por
Elizabeth Stolz, Baxter; “Hoy, Mañana: Datos Clínicos y Tecnología de
Investigación.” por Jacobo Leonardi, Baxter BiosScience; “Seven Secure”
por Luke Hemming; y “Animando Independencia Temprano.” por Maria
Perez, Pfizer.
Le queremos agradecer a Novo Nordisk or proveernos una beca educative
para apoyar el evento y al Patrocinador de Titulo Baxter, Biogen Idec,
y Bayer, nuestros patrocinadores de mesas; Factor Support Network,
12
HemophiliAction
Walgreens, Brothern Healthcare, BioRx y Advanced Specialty Healthcare;
y nuestro patrocinador de almuerzo Pfizer. Estas contribuciones generosas
ayudaron en hacer un vison una realidad para apoderar a la comunidad y
mejorar el conocimiento del exito necesitado para controlar sus vidas.
Los Voluntarios fueron instrumentales en ayudarnos para nuestra misión y
mejoramiento de calidad de vida y contribuir a la comunidad con familias
e individuos viviendo con hemofilia y otras enfermedades sanguíneas.
Este evento no pudo haber sido posible sin la ayuda de voluntarios: Taylor
Frank, Gerry Green, Lori Murphree, Francesca Pascucci, Amanda
Rosales, Chante Ortiz, y The Art of Elysium.
For information about our factor products for hemophilia,
von Willebrand disease, and other rare bleeding disorders, or to
learn about our innovative patient programs, please call or email:
Brian Taylor
Manager Coagulation Products, Southern California
[email protected]
858-525-3490 mobile
858-408-3566 fax
www.CSLBehring.com
Attendees gather for lunch and to visit sponsor booths
Volunteers Lori Murphree and Francesca Pascucci lend a
hand to Andressa Rogers at check in
The Slonaker family is happy to attend this year’s Research
and Education Day
Sophia and Diego Horta and Isabella Catedral enjoy the arts
and crafts workshop with The Art of Elysium
Dan Goodwin and Luke Hemming, Novo Nordisk, are ready to greet the
Southern California’s bleeding disorders community
The Ratcovich family enjoys their lunch before visiting the Skirball Cultural
Center
Our volunteer #1 Gerry Green and Dr. Doris Quon
Little Greyson shows his dad some of his arts and crafts abilities
Kids proudly show off their face painting to family
Greyson Vann-Pett braces the cold morning with his parents and grandparents to be at the event
Fatima Alcantara and a friend explore their creativity and make beautiful
flowers
HemophiliAction
13
Washington Day Focus: Hemophilia Program Funding and
Specialty Tiers Bill
On February 28, 2013, a delegation from California joined over
300 participants from around the country. Representatives from the
Hemophilia Foundation of Southern California were, Linda Corrente,
Evan Borstein, Matt Compton, Michelle Lee, and her son Joshua Kim.
The delegates asked legislators to co-sponsor HR 460, the Patients’
Access to Treatment Act (House) or introduce companion legislation
(Senate) and to support continued funding of the hemophilia programs at
CDC (Centers for Disease Control and Prevention) and HRSA (Health
Resources and Services Administration.
Many lawmakers and advocates united to help our cause. Specifically
on the docket was the HR 460 the patients’ access to treatment act
(house). The bill introduced by representative
David McKinney and Lois Capps would help
remove the burden of cost sharing when it comes
to medication to treat people with bleeding
disorders, chronic conditions and immune
deficiency diseases. As well as support continued
funding of the hemophilia programs at CDC and
HRSA.
other services. Additional co-sponsors testified to the Patients’ Access
to Treatments Act which would prevent private insurers from requiring
greater cost sharing, through higher co-payment and/or co-insurance, for
drugs in specialty tiers. This legislation would benefit people with bleeding
disorders and many others with high drug costs.
Many family members that gained a chance to speak, spoke openly about
their struggles with hemophilia and other diseases and the toll it has taken
on their families, especially financially. Our attendance at this event has
given a voice to our cause and made people more aware of the work that is
being done to help families and individuals in need.
Currently your advocacy has led to at least 5 additional co-sponsors
signing the HR 460 bill. They are: Reps. Coffman
(CO), Norton (DC), Lewis (GA), Moore (WI)
and Langevin (RI)
Washington Days was a success and that you
will continue to advocate for the community in
your home districts. Your voice is important and
adds a face to the policy issues being debated
in Congress. If you would like to serve on our
local advocacy committee, please contact HFSC
Advocacy Chair, Jorge Catedral at 323-525-0440.
These programs provide funding for outreach
and prevention, as well as HTC surveillance and
Evan Borstein, Joshua Kim, Micheele Kim, and Linda Corrente
Michelle Kim and Linda Corrente at the Capital Building
Michelle Kim and Evan Borstein ride the underground shuttle while visiting the Hill
Día en Washington Enfocado en: El Programa de Fundación
de Hemofilia y Proyecto de Ley de Niveles Especiales
En febrero 28, 2013, la delegación de California se unió con mas 300
participantes de alrededor del país. Representantes de la Fundación de
Hemofilia del Sur de california fueron Linda Corrente, Evan Borstein,
Matt Compton, Michelle Lee y su hijo Joshua Kim.
Los delegados pidieron el co-patrocinio de HR 460, el Acto de
Acceso a Tratamiento para Pacientes (en la Casa de Representantes)
o de presentar la legislación (El senado) y de apoyar a la fundación
continua de programas de hemofilia en el CDC (los Centros de Control
de Enfermedades y Prevención) y HRSA (Recursos de Salud y
Administración de Servicios)
Muchos de los legisladores y apoyantes, se unieron para ayudar la
causa. Específicamente en la lista estaba el HR 460 el acta de acceso
a tratamiento para pacientes (Casa de Representantes). EL proyecto
de Ley fue presentado por David McKinney y Lois Caps para poder
ayudar a remover el costo compartido cuando se trata de la medicina
para tratar a personas con enfermedades sanguíneas, condiciones
crónicas y enfermedades de deficiencia inmune. También apoyo
continuo para los programas de hemofilia del CDC y HRSA.
Estos programas proveen fondos para prevención y educación,
también como reviso de Centros de Tratamiento y otros servicios..
14
HemophiliAction
Adicionalmente co-patrocinadores testificaron sobre el Acta de Acceso a
Tratamiento para pacientes el cual prevendría aseguradores privados a
requerir un costo compartido mas grande , a través de costos al paciente
más altos y costo de otros seguros para medicinas en de segundo
nivel.. Esta legislación podría beneficiar a personas con enfermedades
sanguíneas y muchas otras medicinas de costo alto.
Muchos miembros familiares que tuvieron oportunidad de hablar,
comentaron sobre sus retos con hemofilia otras enfermedades y las
dificultades para sus familias especialmente financialmente, nuestra
participación en este evento fue una voz a nuestra causa y más personas
al tanto del trabajo que está actualmente activo para ayudar a familias e
individuos con necesidad.
Actualmente su apoyo a añadido por lo menos 5 co-patrocinadores
adicionales a firmar HR 460. Aquellos son: Representantes Coffman
(CO), Norton (DC), Lewis (GA), Moore (WI) y Langevin (RI)
Los días en Washington fueron un éxito y esperamos que usted continúe
apoyando a la comunidad en sus distritos locales. Su voz es importante y
ayuda a poner un a cara en la poliza la cual está siendo comentada en el
Congreso. Si desea servir como nuestro comité local de apoyo, por favor
comuníquese con HFSC líder de Apoyo Jorge Catedral 323-525-0440
Miles Cole’s Journey May Have Just Begun
When Miles Cole was selected as one of only 13 players from the
Los Angeles County/Central California water polo “Coastal Zone” to
participate in the U.S. Olympic Team pipeline National Training &
Selection Camp, it was an emotional moment for his parents, Joe and
Susan.
Not so much because of Miles’ accomplishment, but because of his
journey getting there. Born with severe Hemophilia A, the prospect of
Miles playing competitive sports, let alone a physical sport like water polo,
was unthinkable. Many “severes” have not survived, are forced to spend
months in the hospital, or are at home fighting internal bleeding issues.
A relatively new medication replaces the clotting factor VIII that Miles
is completely missing. Every 48 hours he must receive the medication
intravenously, something that Miles, 14, enjoys shocking his Santa
Barbara Aquatics Club teammates with on the road. The medication
helps Miles’ blood to clot and allows him to be physically active. His
parents administer it via a port in his chest, but recently Miles is becoming
successful in infusing himself in a vein in his arm. As long as Miles is
treated before games, and receives more medication if he gets hurt, he’s
fine. If Miles misses his meds just one day, he starts to ache, bruises easily
and there can be all sorts of complications.
“When Miles was born we were told he wouldn’t be able to play sports
and would spend a lot of time at home, missing school,” Susan says. “As
Miles & Hemo Homies at Awareness Walk
a baby we used all kinds of padding, he wore a helmet and we had to
restrict his activity.”
Miles’ love of competitive sports was also certainly inherited, and
stimulated while watching his older siblings Jeff and Allie from the
sidelines as a youngster. Jeff, 10 years older, was a water polo CIF Player
of the Year at Santa Barbara High, part of a gold medal winning team at
the national “Junior Olympics” club championships and went on to play
at Princeton University where he became the team’s captain. Allie, 8 years
older, was a soccer and volleyball stand-out in high school then played
volleyball at SBCC and rowed at the University of Puget Sound.
Already 6 feet 2 inches tall, and a force at the set position in water polo,
Miles is also passionate about basketball, including following the Lakers
and playing one-on-one against his father and brother. He’s also played
soccer, competed in Taekwondo, run track and participated for three years
in the Junior Lifeguard program. Only about two years ago he switched
from playing club basketball in Santa Barbara to club water polo, making
his pick to the USAWP National Selection Camp even more impressive.
“Miles success with water polo represents hope for parents who discover
that their new baby boy has hemophilia,” Joe says. “He jokes with his
teammates about it and simply loves the action in the pool – the rougher
the better.”
Miles & water polo team in Montenegro
Miles Cole, water polo
El Camino de Miles Cole Empieza
Cuando Miles Cole fue seleccionado la semana pasada como 13 jugadores
de polo del agua del Condado de los Angeles y Centro de California, para
participar en el equipo en camino a equipo Olímpico en entrenamiento &
campamento de selección, fue un momento emocional para su familia y
padre Joe y Susan.
No solo por la meta de Miles, pero por su camino para llegar ahí. Nació
con hemofilia A severa, el prospecto de Miles era de jugar deportes
competitivos, y un deporte físico como el polo en el agua, era un concepto
que no se creía posible. Muchos ‘severos” no han sobrevivido, y son
forzados a pasar meses en el hospital, o en casa para mejorar de problemas
sanguíneos.
Una medicina relativamente nueva reemplaza el factor VIII coagulante
que le falta a Miles. Cada 48 horas el debe recibir la medicina
intravenosamente, algo que Miles a sus 14 disfruta al sorprender a su Club
Acuático de Santa Barbara cuando están fuera. La medicina le ayuda a
Miles a coagular y permite que el sea activo. Sus padres administran la
medicina por un porte en el pecho, pero recientemente Miles está siendo
exitoso en hacer su propia infusión en la vena del brazo. Si Miles no se da
la medicina un día, empieza a tener dolor, tiene moretones y puede tener
otras complicaciones.
Cuando Miles nació, nos dijeron que el no podría jugar deportes y pasaría
mucho tiempo en casa, perdería días de escuela, “Dijo Susan “Cuando era
bebe usábamos formas para protegerlo, el usaba un casco y tuvimos que
limitar sus actividades.”
A Miles su encanto por los deportes competitivos fue heredado y
estimulado mientras veía a sus hermanos mayores Jeff y Allie cuando era
joven. Jeff, de 10 años juagaba polo de agua Jugador de CFI del Ano en
Santa Barbara High, parte ganador de la medalla de oro y de los Jóvenes
Olímpicos Nacionales y fue a jugar a Princeton University donde se
convirtió en el capitán del equipo. Allie a los 8 años, fue jugadora de futbol
y voleibol una gran jugadora en Bachillerato y jugo voleibol en SBCC y en
la Universidad de Pudget Sound.
Ahora seis pies y dos pulgadas, y una gran fuerza en polo de agua, Miles
también tiene mucha pasión por básquetbol, incluyendo siguiendo el éxito
de los Lakers y jugando uno a uno con su papa y hermano. También ha
jugado futbol soccer, competió en Taekwondo, corrió competitivamente y
participó en tres anos del Programa de salvavidas jóvenes. Solo dos de eso
anos el se movió de jugar club básquetbol en Santa Barbara a club polo
en agua, haciendo su decisión de USAWP selección Nacional aun más
exitosa.
“El éxito de Miles con polo de agua representa esperanza para padres que
descubren que su hijo ha sido diagnosticado con hemofilia,” dijo Joe’ El
bromea con sus compañeros sobre su hemofilia y simplemente adora la
acción del agua- entre mas físico, mejor.”
HemophiliAction
15
As I See It, Prophy for the Soul
Jeff Johnson
When I was in grade school, I remember dreading physical
education. Although my sports talent was as developed as a
circus clown’s talent for subtlety, I enjoyed shooting hoops
and throwing a ball. So why the dislike of PE? Because for
me, being the crippled kid who was made of glass, PE meant
sitting on the bleachers, watching the “normal” kids play
dodge ball, floor hockey, and freeze tag.
Parenting isn’t easy even when things are nearly perfect, so
throw in a bleeding disorder and you increase the difficulty
and stress exponentially. But on the other hand, I can’t help
thinking, it’s just hemophilia! Though that may be a shocking
statement, I challenge everyone to step back a moment and
really reflect on it.
Yes, hemophilia is a bleeding disorder. Yes, it’s expensive and
time-consuming. But what isn’t it? It isn’t a death sentence.
It isn’t a barrier. It isn’t cancer or MS or sickle cell anemia.
Luckily, my parents were ahead of their time in their approach It isn’t a lot of things that are much worse. For hemos today,
to hemophilia, encouraging me to ride my bike, play ball, and the world is as accessible and open as for any clotter, and we
be normal. But my teachers (especially in PE) back in the hemos are now everywhere, doing all the things they do. We
1980s were fearful. Many of them
climb mountains. We ride bicycles
simply chose to sideline me safely
coast-to-coast. We play golf, soccer,
on the benches while they and the
basketball, and yes, even football.
I do still daydream about
normal kids spent an hour having
For hemophiliacs in the 21st century,
fun. For me, this was dispiriting and my unrealized superstardom
there is truly no logical reason to
humiliating. When recess came and playing professional dodge
accept being considered anything
we were all released from the confines
other than normal, even by those
of our classrooms, nobody wanted ball, but in the end, I wound up
who love us most: our parents. I often
to pick the hemo-whatchacallit kid
hear a standard set of statements: “I
where I’m supposed to be.
to be on their team, and why would
feel guilty that he is in pain,” or “I
they? If I couldn’t even throw an
regret that he has to suffer,” or “I feel
underinflated dodge ball in PE, then
bad when he cries.” I understand all
how good could I possibly be on the basketball court? It was of those. Yes, we hemos hurt. We sometimes suffer. We even
a no-win situation and the primary reason I eventually found cry. But who doesn’t? What kid doesn’t fall down and cry
my way into the school band. It was ironic: all through my sometimes? Who doesn’t suffer from something? Unless Kalschool years, our sports teams were Bad-News-Bears terrible El has landed and hopped from his Kryptonian pod into some
while my band won trophies, I dated hot clarinet players, cornfield, I doubt that there is a single kid anywhere who
and I eventually got to play my saxophone in China. So it doesn’t suffer in some way, hemo and clotter alike.
worked out. Mostly. I do still daydream about my unrealized
superstardom playing professional dodge ball, but in the end, Ultimately, I hope that parents facing guilt or regret can find
I wound up where I’m supposed to be.
the strength, courage, peace—or the driving force they need—
to take that step back and examine whether their feelings are
Still, it hurt that my PE teachers viewed me as a fragile kid realistic and beneficial for themselves, and most important,
they couldn’t risk putting into the thick of things because I for their little bleeder. Think of this exercise as “prophy for
might break. Granted, this was the
the soul.” Kids are far more observant
1980s and I, a clumsy and severe
and aware than most adults realize,
hemophiliac, was on cryoprecipitate,
and regardless of how deeply you’ve
so bleeds were drawn-out affairs.
buried your guilty feelings, your child
Kids are far more observant
I might fall and bleed a little, but I
will pick up on them. Your hidden
would gladly have traded an ankle and aware than most adults
guilt could inadvertently tell your
bleed for the chance to participate realize, and regardless of how
child, “You aren’t really normal.”
and be accepted by my peers. But the
After all, would you feel guilty for
adults in charge couldn’t help looking deeply you’ve buried your guilty your child’s brown hair? Or green
at me through hemo-colored glasses.
feelings, your child will pick up eyes? Then why hemophilia?
“
”
“
”
Skip to today. We “hemos” are on them.
experiencing a renaissance in living
with our condition. Our factor is
now safe and effective. We have
a vast support structure of hemophilia treatment centers
(HTCs), national and local chapters, and foundations. Some
of our blood sisters and brothers do continue to struggle
with inhibitors, but progress is even being made there. Life
isn’t perfect, but it’s good. I often encounter frazzled parents
who lament that their child is a “bleeder,” express regret and
guilt about passing on the condition, and even proclaim their
refusal to have more children. I am conflicted when I meet
these parents. On the one hand, they do have a difficult job.
16
HemophiliAction
Hemo parents have one of two paths
to walk: they can eventually choose
to wipe away fear and doubt and to
fully accept their child’s hemophilia
and normality; or they can wear the hemo-colored glasses my
PE teachers wore, acting out of genuine concern and love,
but seeing the disorder first and the kid second. We hemos
thrive when walking hand-in-hand down the first path—not
so much the second. Which path do you choose?
Jeff Johnson lives in Washington with his wife Stephanie.
Psychosocial Implications of Hemophilia
Hemophilia affects the patient’s entire family throughout his lifetime. As
the person with hemophilia grows and develops, family circumstances
also change over time.
Family challenges can negatively impact the ability of the patient
and his family to participate in hemophilia care or adhere to a plan of
treatment. These challenges can include divorce, death in the family,
school problems, financial problems, and job worries. At times, these
matters will take precedence over hemophilia treatment needs. As
always the families HTC and Hemophilia Foundation can assist with
resources and community linkage.
As with the diagnosis of other chronic illnesses, a diagnosis of hemophilia
means that parents must deal with the loss of their hopes for the “perfect”
child. Support should be provided to parents, thereby assisting them in
their efforts to resolve their feelings of loss. This will help facilitate their
acceptance of the diagnosis and adjust their expectations and lifestyle to
adapt and care for their son. Many families progress through a series of
stages in coping with such a diagnosis.
Parents often react initially with shock, disbelief, or denial. Acceptance
of the diagnosis follows and many parents, especially mothers, feel guilt
at having “given” this disorder to their baby. Parents are sometimes
confused and frightened for their child and can experience feelings of
helplessness. They often worry about
• The child’s future
• The child’s development over the lifespan
These are all normal responses, unless they are excessive or prolonged.
Parents might need support to recognize that individuals cope
differently and that this, too, is normal. One parent might acknowledge
the diagnosis and feel guilty about it, while the other might continue to
be in denial. Many parents typically feel isolated by these feelings. It is
helpful to acknowledge the “normality” of all such reactions. Ongoing
education can help to bridge gaps in parental knowledge. Counseling
and guidance, either individually or in groups, can help parents during
this time.
Adolescence is often a difficult time of transition for boys with
hemophilia. Many have felt overprotected by their parents and might
rebel and take risks with their health and safety. While this is a normal
characteristic of adolescence, risk-taking can become more significant
for an adolescent with hemophilia because of the increased potential for
serious harm.
Adolescents with hemophilia might react to their disorder in ways
similar to those of parents of a newly diagnosed infant. Anger and denial
might cause increases in risk-taking and attempts to avoid appropriate
treatment.
Many adults with hemophilia have enjoyed hard-earned independence
from parents and HTCs through education, home treatment, and
determination. However, men with hemophilia face many issues as a
result of the disease.
Center for Disease Control
Implicaciones Psicológicas en Hemofilia
La Hemofilia afecta a pacientes y a todas las familias a través de la vida
de la persona. Ya que la persona crece y se desarrolla, las circunstancias
de las familias también cambian durante el tiempo.
Retos familiares pueden causar un impacto negativo para el paciente
y la familia para participar en el cuidado de la hemofilia y adherir al
plan de tratamiento. Estos retos pueden incluir divorcio, muerte en la
familias, problemas escolares, problemas finánciales, y preocupaciones
del trabajo. A veces, estas preocupaciones toman precedencia sobre la
hemofilia y las necesidades de tratamiento. Como siempre las familias
y el Centro de Tratamiento pueden ayudar con recursos y unión a la
comunidad.
Como con el diagnostico de otras enfermedades crónicas, el diagnostico
de hemofilia significa que el padre o madre debe lidiar con la perdida de
las esperanzas de un hijo “Perfecto.” Se le debe proporcionar apoyo, y
así ayudar en aceptar el diagnostico y ajuste en resolver los sentimientos
de perdida. Esto le puede ayudar en aceptar el diagnostico y ajustar sus
expectativas de un etilo de vida diferentes y en adaptarse al cuidado
para su hijo. Muchas familias progresan a través de las etapas de lidiar
con tal diagnostico.
Padres muchas veces reaccionan inicialmente en shock, no lo pueden
creer, o negación. Aceptación del diagnostico sigue a mucho padres,
especialmente a madres, quienes se sienten culpables por haberles
“dado” la enfermedad a su hijo. Padres a veces se cofunden y tienen
miedo por su hijo y la experiencia de sentimientos de no tener ayuda.
Muchas veces se preocupan por:
• El futuro de su hijo
• El desarrollo durante la vida
Todas estas respuestas son normales, a menos que sean excesivas o
prolongadas. Padres puede que necesiten apoyo para reconocer que
individuos afrontan las cosas diferentes, y todo esto es normal también.
Un padre puede reconocer el diagnostico y se puede sentir culpable,
mientras el otro puede continuar negándolo. Muchos padres típicamente
se sienten solos por esto sentimientos. Esto es importante reconocerlo la
“normalidad” de tales reacciones. Educación continua puede ayudar a
crear un puente de áreas en conocimiento de padres. Consejería y guía,
ya sea de individuos o en grupo, puede ayudar durante este periodo.
Adolecentes muchas veces tienen dificultad en la transición de niños
a jóvenes con hemofilia. Muchos se sienten sobre protegidos por sus
padres y pueden rebelarse y tomar riesgos con su salud y seguridad.
Mientras esto es una característica normal de un adolecente, de
tomar riegos y pueden convertirse en algo mas significante cuando el
adolecente tiene hemofilia por el aumento de herirse.
Los adolecentes con hemofilia pueden reaccionar a su condición en
formas similares a los que tiene un bebe recién diagnosticado. Rabia, y
negación y negación lo cual causa aumento de tomar riegos y tratar de
evitar tratamiento apropiado.
Muchos adultos con hemofilia disfrutan una independencia ganada de
los padres y Centros de Tratamiento a través de educación, tratamiento
en casa, y determinación. Sin embargo, hombres con hemofilia encaran
muchos problemas como resultado de la enfermedad.
Por favor comuníquese con la Fundación de Hemofilia del Sur de
California para recursos adicionales y ayuda.
Centros de Control de Enfermedades Y Prevencion.
HemophiliAction
17
A Warm Southern California Welcome to the National
Hemophilia Foundation Convention
The Hemophilia Foundation of Southern California is pleased
to be the host chapter and welcome the National Hemophilia
Foundation convention and annual meeting to California.
Let’s have a record breaking number of Californians at this
convention. Join us on October 3-5 at the Hilton hotel at 777
W. Convention Way Anaheim, CA 92802.
A highlight of the convention is the Awards Luncheon on Saturday where special individuals and programs are recognized
for their excellence in service to the hemophilia community.
If you would like to nominate a person or a program for a National award, please contact us at 323-525-0440 for the application. Listed below are the award categories.
Lifetime Achievement Award: Recognizes an individual who
has dedicated his or her life to the improvement of life within
the bleeding disorder community, by providing their time and
energy, on a national and or international scale to help advance
research, care and advocacy.
Humanitarian of the Year: This award is open to all NHF
chapter/hemophilia organization paid staff and HTC’s. Given
to an individual who has made outstanding contributions in
multiple areas on behalf of the bleeding disorder community,
though their caring sprit and their ability to improve the quality of life for patients and their families.
Volunteer of the year: Honors a person whose volunteer work
for NHF has served to meet its missions and goals.
Award of Excellence: Meritorious Service Award: Presented
to a young person who has helped educate other both in an out
of the bleeding disorder community, by increasing awareness
and understanding.
Award of Excellence: Meritorious Service Award for Outstanding Leadership and Service: Presented to an individual
who has made outstanding efforts to educate and bring awareness of bleeding disorders.
Award of Excellence: Chapter recognition award: Recognizes outstanding work of NHF chapter volunteers.
Award of Excellence: Genetic counselor of the year: Acknowledges individual who has taken a leading role and assisted,
guided and educated families and individuals on genetic inheritance of bleeding disorders through expertise and empathy.
Award of Excellence: Physician of the year: Honors a distinguished physician who has had a major impact on the lives of
individuals with bleeding disorders through compassion and
knowledge as well as being patient, an advocate and a committed caregiver.
18
HemophiliAction
Award of Excellence: Researcher of the year: Honors a
distinguished scientist who has made major contributions to
bleeding disorder research.
Award of Excellence: Advocate of the year: We would like to
welcome all to nominate any individuals who you feel might be
worthy of these awards and recognition, and don’t forget to
attend our annual event in October. We look forward to sharing is special weekend with all our me members in the bleeding
disorder community as well as any attendees who would like to
find our more information about Hemophilia and other clotting
and/or bleeding disorders.
Communication award: Which recognizes an outstanding
communications entity that successfully distributes information
to the bleeding disorder community.
Health Education: Recognizes, effective and creative programs in health education and prevention among sub groups of
the bleeding disorder community such as women, parents, and
families.
Outreach: Recognizes effective, creative programs that identify and reach out to the underserved people of the bleeding
disorder community, including modeling programs for diverse
populations and women with bleeding disorders.
Award of Distinction: Tami Wood –Lively Collaboration
Award: Recognizes educational programs demonstrating outstanding efforts in collaboration between HTC’s and chapters.
That impacts the broader community because of those collaborations, displaying outstanding service to the bleeding disorder
community.
Award of Excellence: Physical therapist of the year:Honors
and individual who has demonstrated service to the bleeding
disorder community above and beyond their call of duty.
Award of Excellence: Social worker of the year: Honors an
individual who has demonstrated outstanding service to the
bleeding disorder community beyond their day to day responsibilities. Presented to a young person who has helped educate
other both in an out of the bleeding disorder community, by
increasing awareness and understanding.
We would like to welcome all to nominate any individuals who
you feel might be worthy of these awards and recognition, and
don’t forget to attend our annual event in October. We look
forward to sharing is special weekend with all our me members
in the bleeding disorder community as well as any attendees
who would like to find our more information about Hemophilia
and other clotting and/or bleeding disorders.
NHF’s 65 th Annual Meeting –
“United in Progress” Grants Available
ATTENTION FIRST-TIME ANNUAL MEETING ATTENDEES!
The National Hemophilia Foundation is pleased to offer Educational Participant Grants for first-time attendees to its 65th
Annual Meeting, “United in Progress” in Anaheim, California,
October 3-5, 2013. The Annual Meeting enables our community to come together and exchange information on a wide
variety of topics, from the basics of diagnosis to the most recent
and relevant developments in treatment and technology. It is
the premier opportunity for networking and support for individuals and families affected by bleeding disorders. NHF currently provides $35,000 annually to families who wish to attend
the meeting and take advantage of the wealth of information
and educational opportunities during the convention. Last
year’s Annual Meeting in Orlando, Florida, attracted more
than 2,930 participants. We anticipate that this number will
continue to grow with all California families in attendance.
Eligibility
In our quest to foster a more inclusive Annual Meeting, NHF
offers a limited number of Educational Participant Grants to
individuals and/or families with bleeding disorders attending
the Annual Meeting for the first time. We would especially like
to provide assistance to those unable to attend due to personal
obstacles or other barriers. Awards will be based on these factors, as well as on need.
Only applicants from the United States and its territories are
eligible to apply for the grant. NHF staff and their relatives are
not eligible to apply.
What the Educational Participant Grants Cover Grants may be
used to cover any of the following:
• Airfare
• Mileage
• Hotel
Applicants may apply for grants in one or more of these categories, for a maximum of three nights and four days.
How to Apply for Educational Participant Grants Educational
Participant Grants can be completed online. If you cannot fill
in this form online, please e-mail the contact below.
Application Deadline
Forms must be completed by Friday, June 7, 2013.
For More Information Contact: [email protected].
La reunión 65 Anual de NHF“Unidos para Progreso” becas disponibles
ATENCION PARTICIPANTES POR PRIMAVEZ
La Fundación Nacional de Hemofilia esta orgullos de ofrecer
Becas para participantes para aquellos participando por primera vez a la reunión 65 “Unidos en Progreso” en Anaheim,
California octubre 3-5, 2013. La reunión Anual la cual permite
a miembros de la comunidad, a unirse y compartir información
en una variedad de temas, desde los básico del diagnostico
hasta lo más reciente e importante desarrollos en tratamiento y
tecnología. Es la mejor oportunidad de crear una red y apoyar
a individuos y familias afectadas por enfermedades sanguíneas.
NHF actualmente provee $35,000 anualmente a familias que
desean participar en la reunión y tomar ventaja de la cantidad
de información y oportunidades educativas durante la convención. El año pasado, la Reunión Anual en Orlando, Florida
atrajo a más de 2,390 participantes. Anticipamos que este
número continuara creciendo con todas las familias de California participando.
Como Calificar
En nuestra meta en incluir a miembros de la comunidad a la
Reunión Anual, NHF ofrece un número limitado de Becas
Educativas para participantes a individuos y/o familias con
enfermedades sanguíneas participando en la Reunión Anual
por primera vez. Le queremos proveer especialmente ayuda
a aquellos que no pueden participar por retos personales. Las
becas serán basadas en estos factores, y también en necesidad.
Solo los aplicantes de Los Estados Unidos y sus territorios califican para aplicar para la beca. Los empleados de NHF y sus
familiares no califican.
Que cubre la beca de participantes Las becas se pueden usar
para cubrir lo siguiente:
• Vuelo
• Millage
• Hotel
Lo aplicantes pueden aplicar por las becas en una o más de estas categorías, para un máximo de tres noches y cuatro días.
Como aplicar para la Beca Educativa para Participantes La
aplicación se puede completar en la red. Si no la puede llenar
por la red, por favor escriba al correo electrónico abajo.
Fechas para entregar la Aplicación
Las Formas deben estar completas antes de junio 7, 2013.
Para más información comuníquese con: sroger@hemophilia.
org.
HemophiliAction
19
Pediatric Organization Urges Ruling Out Bleeding
Disorders When Evaluating Child Abuse
In two reports published in March, the American Academy of Pediatrics (AAP) is advising clinicians to exclude potential causes of
bleeding in children before deciding child abuse is the cause.
The first report, “Evaluation for Bleeding Disorders in Suspected
Child Abuse,” was published online on March 25, 2013, in the
journal Pediatrics. The lead author of the report was James Anderst, MD, of Children’s Mercy Hospital (CMH) in Kansas City.
In it, he and his coauthors explain that bruising and/or bleeding in
a child can raise concerns over possible child abuse. A history and
clinical assessment can help determine the necessity of an evaluation for a potential bleeding disorder. Knowledge of the prevalence
and known clinical symptoms of individual bleeding disorders can
therefore be used to guide laboratory testing.
A separate technical report, “Evaluating for Suspected Child
Abuse: Conditions that Predispose to Bleeding,” was published
in the same issue of Pediatrics. Shannon L. Carpenter, MD, of
CMH, lead author, and her co-authors reviewed conditions that
predispose children to bleeding. They stressed the importance of
a balanced, thorough and thoughtful approach to evaluating children who present with bleeding and/or bruising.
“Suspicious bleeding or bruising in a child warrants careful consideration of medical and other possible causes, in addition to
abuse. Inappropriate diagnosis of child abuse can lead to removal
of a child from the home, prosecution of innocent people, or both,”
explained Carpenter and co-authors. “On the other hand, erroneously attributing child abuse to medical or accidental causes can
increase the risk of future abuse.”
The reports included the following recommendations for clinicians:
1. A complete evaluation of a child’s medical, trauma and family
histories, and a thorough physical examination are the starting
point for determining the cause of bruising or bleeding.
2. In every case, consideration should be given to the possibility
that a medical condition has caused the bruising or bleeding. The
history and physical examination should guide decisions about the
need for laboratory evaluations of bleeding disorders.
3. When laboratory testing is indicated, initial evaluations should
reflect the prevalence of a condition and the potential for specific
conditions to lead to specific findings.
4. Laboratory results suggestive of a bleeding disorder do not rule
out abuse.
5. Children with intracranial hemorrhage (ICH) often receive
blood-product transfusions, and tests for bleeding disorders
should be delayed until transfused clotting elements have been
eliminated.
6. Consult with pediatric hematologists on a regular basis to remain aware of the most current information regarding the prevalence, assessment, and signs and symptoms of bleeding disorders.
The report also included a review of some conditions that can
cause bruising or bleeding that might be confused with child
abuse: ICH and non-intracranial bleeding, common factor deficiencies (VII, VIII, IX) and uncommon deficiencies (II, V,
combined V and VII, and X), von Willebrand disease, vitamin K
deficiency, fibrinogen abnormalities, defects of endogenous
fibrinolysis, congenital platelet abnormalities and vascular disorders (Ehlers-Danlos syndrome and osteogenesis imperfecta).
Source: MedPageToday.com, March 25, 2013
Toddler with HIV Potentially Cured
In a case study presented at the Conference on Retroviruses and
Opportunistic Infections (CROI) in Atlanta, GA, on March 4,
2013, investigators reported on a 26-month-old child from Mississippi with HIV who was functionally cured.
The child, born prematurely in July 2010 to a mother who didn’t
know she was infected with HIV, was treated with the antiretroviral drugs zidovudine, lamivudine and nevirapine starting 30
hours after birth and continuing for the next 18 months. After
one month on the antiretroviral drugs, the baby’s viral load was
undetectable. Although the drug regimen was stopped at the
mother’s request when the child was 18 months old, the viral load
is still undetectable some 10 months later. Investigators continue
to monitor the case.
The case study, “Functional HIV Cure after Very Early ART of
an Infected Infant,” was presented by lead case analysts Deborah
Persaud, MD, associate professor of infectious diseases at the
Johns Hopkins Children’s Center in Baltimore, and Katherine
Luzuriaga, MD, professor of pediatrics and molecular medicine
at the University of Massachusetts Medical School in Worcester.
20
HemophiliAction
The research by these and other investigators working on the case
was supported through funding from the National Institute of Allergy and Infectious Diseases (NIAID) and the Eunice Kennedy
Shriver National Institute of Child Health and Human Development (NICHD), branches of the National Institutes of Health.
“Despite the fact that research has given us the tools to prevent
mother-to-child transmission of HIV, many infants are unfortunately still born infected. With this case, it appears we may have
not only a positive outcome for the particular child, but also a
promising lead for additional research toward curing other children,” said Anthony S. Fauci, MD, director of NIAID Director.
“This case suggests that providing antiretroviral therapy within
the very first few days of life to infants infected with HIV through
their mothers via pregnancy or delivery may prevent HIV from
establishing a reservoir, or hiding place, in their bodies and, therefore, achieve a cure for those children,” said Persaud.
Source: NIH News, March 3, 2013
BEAT Losing a note
Take charge with the
complimentary Beat Bleeds app.
Set your ABR goal, track bleeds, set infusion reminders, and
review your progress. It’s never been easier to take charge.
BEAT
thereforyou.com/beatbleeds
For more information on ways to beat bleeds,
contact your Baxter representative today:
Clem Adkins
Robert Friedman
(805) 443-1331
(310) 944-2162
[email protected]
[email protected]
Baxter is a registered trademark of Baxter International Inc.
All other products or trademarks appearing herein are the properties of their respective owners.
©Copyright (March 2013), Baxter Healthcare Corporation. All rights reserved. HYL8436
HemophiliAction
21
Creating Memories for A Lifetime,
Sign up Now For Summer Camp 2013
Summer camp is right around the corner! 2013 marks the 10th
summer that the Hemophilia Foundation of Southern California and The Painted Turtle have partnered to provide an
extraordinary summer camp experience for children with hemophilia and von Willebrand Disease. Camp will be held July
29-August 3, 2013, for affected campers ages 7-16. Whether
you like archery, fishing, boating, high ropes, woodshop, or the
Pinewood Derby, it’s all at camp! And the best part of camp
is the amazing friends you meet there. Cabins house 9 boys or
girls of similar ages who are cared for by a well-trained and
camper-focused staff in a fun, safe, and empowering environment. Doctors and nurses are available at The Painted Turtle
all week to take are of any medical needs campers might have
while at camp. We have lots to celebrate in our 10th year of
summer camp together – years of Pinewood Derby competition, hundreds of friendships, and 85 Big Stick awards! Join
us for another incredible summer at camp!
You are also invited to The Painted Turtle’s Spring into Camp
Celebration event on Saturday, May 4th. The event promises
to host fun camp activities, carnival games, live music, and fun
for everyone!
For applications and more information:
• Visit www.thepaintedturtle.org/for-parents/application for
our new, online application or contact Rosalyn Skelton, Camper Admissions Manager, at [email protected] or at
661.724.1768 x203.
• We are also proud to offer a Leader-In-Training program
this summer for 17- and 18-year-old campers. For more information and to apply, visit http://www.thepaintedturtle.org/
leadership-program/
Creando Recuerdos para toda la Vida,
Inscríbase ahora. Para el Campamento de Verano de 2013
¡El campamento de verano está muy cercano! 2013 marca el
decimo verano de la unión de Fundación Hemofilia del Sur de
California y Painted Turtle para proveer un verano extraordinario y una experiencia para niños con hemofilia y von Willebrand Disease. El campamento será en julio 29-agoto 3, 2013
para aquellos afectados de edades 7-16. Ya sea que le guste tiro
al arco, pescar, montar en bote, cuerdas altas, carpintería, o la
carrera de carros de Madera Derby, todo está en el campamento. Y la mejor parte es todos los amigos que están ahí también.
Las cabañas duermen a 9 niños o niñas de edades similares
quienes son cuidados por los empleados del campamento entrenados para tener un verano divertido, seguro y con un ambiente de autoestima. Doctores y enfermeras estan disponibles en
Painted Turtle toda la semana para cuidar todas las necesidades
medicas de los campistas mientras están en el campamento.
¡Tenemos mucho que celebrar en 10 anos de veranos juntosanos de carreras de carros de madera, sienes de amistades, y 85
22
HemophiliAction
Premios de Big Stick! Únanse para otro verano increíble!
También está invitado a la Celebración del Campamento de
Primavera el sábado mayo 4. Este evento promete tener diversión, juegos de carnaval, música en vivo para todos!
Para aplicaciones y más información:
• Visite www.thepaintedturtle.org/for-parents/application para
una nueva aplicación en la red o comuníquese con Rosalyn
Skelton, Manejadora de Admisiones, en [email protected] o al 661.724.1768 x203.
• Estamos orgullosos de ofrecer el programa de lideres en entrenamiento este verano para aquellos de 17 y 18 anos campistas previos. Para mas información apliqué o visite:
http://www.thepaintedturtle.org/leadership-program/
Our Future Leaders In Training
Camp Out Loud, Camp Out Loud, Live a Little Larger, Camp
Out Loud! This was the cheer that was heard across camp in
2012 as The Hemophilia Foundation of Southern California
and The Painted Turtle partnered for another safe, empowering, high-energy, and fun week at camp. We encouraged our
campers to “Camp Out Loud,” making the most of their week
at camp and also challenging them to take what they learned
at camp and transfer it to their everyday life. Whether it’s the
teamwork, friendship, or a greater sense of self-confidence that
campers experience at The Painted Turtle, the lessons they
learn at camp make a positive impact on their lives. The best
example of this long-term growth has been evident and year
after year we see campers who have aged out of our program
return to camp as
Leaders-In-Training
(LIT). The LIT
program is designed
for 17- and 18-year
old former campers
to provide a week
of community, education, recreation
and growth. Last
year six campers
returned to The
Painted Turtle as
an LIT with one
goal in mind: to
give back to camp
by serving as a role
model and leader
for younger camp-
ers and help create the powerful experience they were able to
have as a camper. The LITs made an impact in their cabins and
across camp and at our camp closing, Calvin Dutcher, a longtime camper and now LIT, shared this message:
“Each year camp shapes me and reminds me of the person I
want to be… each year I learn something new about myself…
all these qualities we carry into our everyday lives, challenging ourselves, trying new things, and working with others are
just a few ways camp has shaped us. I love The Painted Turtle.
I believe in its magic. But I love it especially for 1 reason. It
brings out the best in each individual… No matter what you
take back from this week to your everyday lives, I hope you
strive to be the best you can
be, living life the right way,
with love, compassion, integrity, and fun.”
The Hemophilia Foundation
of Southern California and
The Painted Turtle are proud
of our campers and the way
they “Camp Out Loud” both
while at camp and in their
everyday lives.
To learn more about the
Leader-In-Training program,
and to apply, visit our website
at: http://www.thepaintedturtle.org/leadership-program/
Nuestros Líderes del Futuro en Entrenamiento
Disfrutando el Campamento, Vivan en Grande, Disfruten el
campamento!! Este es una de las canciones a través del campamento en 2012 mientras la Fundación de Hemofilia del Sur
de California y Painted Turtle se une para tener otra semana
segura, divertida con alta energía. Los invitamos en animar a
los campistas a Disfrutar en Grande cuenda pasen la semanas
en el campamento y retándolos a tomar lo que aprenden en el
campamento y que lo apliquen todos los días. Ya sea a trabajar
juntos con compañeros, amistades, o de tener gran autoestima
que aprenden en el campamento. Las lecciones que aprenden
en el campamento hacen un impacto positivo en sus vidas. Los
mejores ejemplos de este crecimiento de toda la vida, es evidente ano tras año cuando vemos a los campistas que a están
muy adultos para participar como campistas, y vuelven como
Lideres-en –entrenamiento (LIT). El programa de LIT es
diseñado para jóvenes de 17 a 18 años que han sido campistas
antes, para proveer una semana de comunidad, educación, recreación, y crecimiento. El ano pasado 6 campistas volvieron al
campamento como LIT con una meta en mente: de devolver al
campamento al servir como modelo de liderazgo para campistas
más jóvenes y ayudar a crear una experiencia poderosa como la
que ellos tuvieron como campistas. Los LITs tuvieron un gran
impacto en sus cabañas a través del campamento. Por ejemplo
durante la ceremonia Calvin Dutcher, un campista de largo
tiempo y ahora un LIT compartió este mensaje:
“Cada ano el campamento nos modal mentes y no me recuerda
de la persona que quiero Ser… cada ano aprendo algo Nuevo
sobre mi mismo…todas estas cualidades las llevamos todos los
días, nos retamos, probando cosas nuevas y trabajando con
otros son unas de la formar que el campamento me a moldado
a mi. Adoró a Painted Turtle. Creo que es magia. Pero lo adoro
por 1 razón, ayuda a a cada uno a demostrar lo mejor de cada
uno… No importa lo que se lleve de esta semana a usar para
cada día de sus vidas, espero que se empujen a ser lo mejor
que puede ser, a vivir la vida en la manera correcta, con amor,
compasión, integridad y diversión.”
La Fundación de Hemofilia del Sur de California y Painted
Turtle estan orgullosos de nuestros campistas y la forma en que
Disfrutan el campamento todos los días. Para aprender mas
sobre el programa de Lideres en Entrenamiento, y aplicar por
favor visítenos en http://www.thepaintedturtle.org/leadershipprogram/
HemophiliAction
23
Life is a Beach!
Join us for our 5th Annual
Southern California’s Hemophilia Walk
at Crescent Bay Park in Santa Monica on October 19
Come one come all to the 5th Annual Southern California’s
Hemophilia Walk! We are very pleased to announce that we
will be hosting this year’s Walk at the beach and we are inviting
everyone to come out and play in the sand and surf and join us
for fundraising, music, exercise, and more. Save the date! We
are on and walking the extra mile beachside!
Last year we exceeded our fundraising goal by raising over
$78,000 dollars. This year with your help and dedication we
will go beyond last year’s success.
There are many ways you can participate: You can form teams,
joins existing ones, walk as an individual, fundraise and or
volunteer. Call the office to register or visit http://hemophilia.
org/walk/ and click on “CA Los Angeles.”
Mark your calendars! Our 5th annual Southern California’s
Hemophilia Walk is taking place on October 19 at Crescent
bay Park in Santa Monica. Check in starts at 8am and the 5K
walk starts at 9am.
Jennifer and Donovan Guerrero,
a mom and son meeting the
challenges of an inhibitor
Share what you know and
change what is possible
We learn from those who have been there before. That’s why
Novo Nordisk created The Changing Possibilities Coalition.
Whether you are dealing with a new diagnosis or have faced
the challenges of hemophilia for years, you can share your
experiences and insights to help others live a better life.
Start by joining The Coalition today at JointheCPcoalition.com.
Changing Possibilities in Hemophilia®
Novo Nordisk Inc., 100 College Road West, Princeton, New Jersey 08540 U.S.A.
Facebook® is a registered trademark of Facebook, Inc.
Changing Possibilities in Hemophilia® is a registered trademark owned by
Novo Nordisk Health Care AG.
© 2011 Novo Nordisk Printed in the U.S.A. 0311-00001987-1 April 2011
24
HemophiliAction
For more information,
visit BayerFreeTrial.com
or call 1-866-329-3449
(Monday through Friday, 8:30 AM – 5:30 PM, ET).
©2012 Bayer HealthCare Pharmaceuticals Inc. All rights reserved
BAYER and the Bayer Cross are registered trademarks of Bayer. 02/12 KN10000212
* SUBJECT TO APPROVAL.
TERMS AND CONDITIONS APPLY.
HemophiliAction
25
HEMOPHILIA
COUNCIL OF
CALIFORNIA
Vo l u m e V
Issue 1
Advocacy Update
February 2013
Legislative Updates
By Terri Cowger Hill, HCC Consultant
Future Leaders
Covered CA Announces Standard Benefit Plans & Launches Consumer Web-Site
Every year young men and
women ages 14-22 who are
affected with a bleeding disorder,
come to Sacramento to learn
about the Legislative process.
They also learn about the current
programs that support individuals
with bleeding disorders and
how to educate legislators about
bleeding disorders and the
importance of the programs
In February, Covered California released its standard benefit plans that will be made
available to consumers on the individual and small employer group markets later this year.
The concept is to give consumers an early look at what plans and options will be available
to them once the Affordable Care Act is fully operational here in California. The State plans
to begin the online enrollment process by October of 2013 with eligible individuals enrolled
in coverage by January 1, 2014. Peter Lee, their Executive Director, said “the decision by
Covered California’s Board to establish standard benefits is placing consumers in control of
making an apples to apples comparison of health care coverage plans”. Basically consumers
will have choices of plans: Bronze, Silver, Gold or Platinum. Those families with lower incomes
will receive subsidies to help cover the cost of their care. The federal government is paying
for most of the costs via large grants to the States for the first several years. To learn more
about this new coverage go to: www.healthexchange.ca.gov/Pages/Communications.aspx
Covered California also launched a new Consumer Web Site this week: www.coveredca.
com
Most people with Hemophilia in California have private health insurance coverage or
received health care benefits via one of three State programs: Medi-Cal, California Children’s
Services (CCS), or the Genetically Handicapped Persons Program (GHPP). Covered California
is another option for families who don’t qualify for these other programs.n
After two days of training the
young advocate participates in
our annual Legislative Day for
Bleeding Disorders and advocates
for supportive services for the
Bleeding Community throughout
the state.
For more information contact
Heidi 916 498-3780. n
Excitement Builds for WFH 2016 World Congress in Miami
By Neil Frick, MS
The World Federation of Hemophilia (WFH) World Congress will be held in the United States for the first time in 20 years in
2016 in Miami. WFH’s National Member Organizations (NMO) voted in favor of this decision in July at the 2012 World Congress
in Paris.
NHF has been working with WFH for many years by participating in NMO trainings, providing organization updates in
HemAware, sharing publications and participating in the Global Blood Safety Forums. Most recently, WFH approved NHF’s
proposal to develop a twinning partnership with Nigeria. NHF will assist Nigeria with outreach efforts to educate patients, the
general public and local organizations about hemophilia. We also will help with advocacy efforts to encourage the Nigerian
government to recognize hemophilia as a noncommunicable disease and begin to provide assistance to patients. Currently,
clotting factor product is only available through charitable donations through the Hemophilia Foundation of Nigeria.
Otherwise, a patient must purchase clotting factor in a hospital at double the cost of what is charged in the US and without
knowledge of where the factor is manufactured. NHF hopes that through this four-year twinning relationship, we can foster
change within Nigeria and help the Hemophilia Foundation of Nigeria develop into a thriving WFH NMO.
One of the main reasons NHF was unable to host a WFH Congress in the US for the past two decades was the federal ban on
overseas HIV patients traveling here. But in 2009, ¬President Barack Obama announced the removal of the ban, which allowed
NHF to move forward with the bid to host the 2016 Congress.
Neil Frick, MS, is the vice president for research and medical information at the National Hemophilia Foundation.
Reprinted from HEMAWARE/Winter 2013
© 2013 National Hemophilia Foundationn
The Hemophilia Council of California exists to provide public information and to coordinate activities which will promote and ensure the welfare of all California organizations representing persons with
coagulation disorders and which will directly or indirectly improve the quality of life for all persons with coagulation disorders and their families in the state of California.
26
HemophiliAction
Promoción de actualización
HEMOPHILIA
COUNCIL OF
CALIFORNIA
Vo l u m e V
Issue 1
febrero 2013
California Cubierto anuncia planes de beneficios
estándar y lanza un sitio web para el Consumidor
En febrero, California Cubierto dio a conocer sus planes de beneficios estándar que se pondrán a
disposición para los consumidores en los mercados individuales y para los empleadores de negocios
pequeños, a finales de este año. La idea es dar a los consumidores una oportunidad de ver los planes
y opciones que estarán a su alcance una vez que la Ley de Asistencia Asequible está en pleno funcionamiento en California. El Estado tiene previsto comenzar el proceso de inscripción por internet en
octubre de 2013, con las personas elegibles inscritos en la cobertura el 1 de enero de 2014. Peter Lee,
el director ejecutivo, dijo que “la decisión de la Junta de California Cubierto es establecer los beneficios estándar y darles oportunidad a los consumidores que comparen manzanas con manzanas de
los planes de cobertura de salud”. Básicamente, los consumidores tienen opciones de planes: Bronce,
Plateado, Oro o Platino. Las familias con menores ingresos recibirán subsidios para ayudar a cubrir
el costo de su seguranza. El gobierno federal está pagando la mayor parte de los costos a través de
grandes subvenciones a los estados los primeros años. Para obtener más información acerca de esta
nueva cobertura, visite: www.healthexchange.ca.gov / Pages / Communications.aspx
Cubierto California también lanzó un sitio web para el consumidor esta semana: www.coveredca.
com
La mayoría de las personas con hemofilia en California tiene cobertura de seguro de salud
privado o reciben beneficios de atención médica a través de uno de los tres programas estatales:
Medi-Cal, Servicios para Niños de California (CCS), o el Programa para Personas con Discapacidades
Genéticas (GHPP). Cubierto California es otra opción para las familias que no califican para estos
programas. n
Futuros Líderes
Cada año, hombres y mujeres
jóvenes de 14-22 años que están
afectados por un trastorno de sangre,
vienen a Sacramento para aprender
sobre el proceso legislativo. También
aprenden sobre los programas que
apoyan a las personas con trastornos
de sangre y la forma de educar a los
legisladores acerca de trastornos de
sangre y de la importancia de los
programas.
Después de dos días de
entrenamiento el joven participa
en nuestro Día Legislativo Anual de
trastornos de sangre y piden apoyo
para los servicios para la comunidad
de personas con trastornos de sangre
en todo el estado.
Para más información contacte a
Heidi 916 498-3780.
-Por La Abogada Legislativa del HCC Terri Cowger Hill
Emoción crece por 2016 Congreso Mundial del WFH en Miami
Escrito por Neil Frick, MS
El Congreso Mundial de la Federación Mundial de Hemofilia (WFH) se llevará a cabo en los Estados Unidos por primera vez en 20 años en 2016 en Miami.
La Organización Nacional de Miembros de la WFH (NMO) votaron a favor de esta decisión en julio 2012 en el Congreso Mundial en París.
NHF ha estado trabajando con la Federación Mundial de Hemofilia (WFH) durante muchos años, participando en entrenamientos NMO, proporcionando
actualizaciones en la organización HemAware, compartiendo publicaciones y en la participación en los Foros de Seguridad Global de sangre.
Recientemente, WFH aprobó la propuesta de NHF para desarrollar un hermanamiento con Nigeria. NHF ayudará a Nigeria con los esfuerzos de alcance para
educar a los pacientes, las organizaciones locales y el público en general sobre la hemofilia. También vamos a ayudar en los esfuerzos de promoción para
alentar al gobierno nigeriano a reconocer que la hemofilia no es una enfermedad transmisible y pedir que comiencen a prestar asistencia a los pacientes.
Ahorita, producto de factor de coagulación sólo está disponible a través de donaciones de caridad a través de la Fundación de Hemofilia de Nigeria. Si
no, un paciente debe adquirir factor de coagulación en un hospital al doble del coste de lo que se cobra en los EE.UU. y sin el conocimiento de donde es
fabricado el factor. NHF espera que a través de esta relación de hermanamiento de cuatro años, podemos promover el cambio dentro de Nigeria y ayudar a
la Fundación de Hemofilia de Nigeria convertirse en una próspera WFH NMO.
Una de las razones principales NHF no pudo organizar un Congreso de la WFH en los EE.UU. durante las últimas dos décadas fue la prohibición federal de
traer pacientes con VIH aquí. Pero en 2009, presidente Barack Obama anunció el levantamiento de la prohibición, lo que permitió NHF para seguir adelante
con la candidatura para organizar el Congreso de 2016.
Neil Frick, MS, es el vicepresidente de investigación e información médica en la Fundación Nacional de Hemofilia.
Tomado de HEMAWARE / Invierno 2013
©2013 Fundacion Nacional de Hemofilian
El concilio para la hemofilia en california existe para proveer información publica y para coordinar actividades las cuales promoverán y aseguraran el bienestar de todas las organizaciones de California que representan
a personas con enfermedades de coagulación y las cuales directamente o indirectamente mejoraran la calidad de vida para todas las personas con enfermedad de coagulación y sus familias en el estado de California.
HemophiliAction
27
Hemophilia Foundation of
Southern California
NONPROFIT
US POSTAGE
PAID
OAKLAND CA
PERMIT NO.3729
A Non-Profit Charity Dedicated to
Serving the Needs of the
Bleeding Disorders Community.
Hemophilia Foundation
of Southern California
6720 Melrose Avenue
Hollywood, CA 90038
Tel: (323) 525-0440
Fax: (323) 525-0445
[email protected]
www.hemosocal.org
Hemophilia Foundation of Southern California
2013 Calendar of Events
April 7 – 8
April 25 - 27
May 13 - 15
May 15
May 25
June 10
July 29 – August 3
August 18 – 24
October 3 – 5
October 19
Regional Meetings TBA
Region IX Hemophilia Treatment Center Annual Convention – Reno, NV
HFA Symposium, Dallas, TX
Future Leaders Day – Sacramento, CA
Legislative Day – Sacramento, CA
Family Information Day – Automobile Driving Museum, El Segundo*
Golf & Tennis Tournament, Braemar Country Club
Camp Brothers and Sisters, Camp Painted Turtle*
Bike Race
NHF Annual Convention, Anaheim, CA
Hemophilia Walk – Crescent Bay Park, Santa Monica
Los Angeles, Inland Empire, Orange County, Santa Barbara/Ventura*
• Dates & locations are subject to change
www.hemosocal.org Telephone: (323) 525-0440 Fax: (323) 525-0445
Calendario de la Fundación de Hemofilia del Sur de California
Calendario de Eventos 2013
Abril 7 – 8
Abril 25 – 27
Mayo 13 – 15
Mayo 15
Mayo 25
Junio 10
Julio 29 – Agosto 3
Agosto 18 – 24
Octubre 3 – 5
Octubre 19
Reuniones regionales
Convención Anual de Hemofilia Región IX Centros de Tratamiento– Reno,
Simposio de HFA – Dallas, TX
Día de Lideres del Futuro– Sacramento, CA
Día Legislativo – Sacramento, CA
Día de Información Familiar– Museo de Automóbiles, El Segundo*
Torneo de Golf & Tenis, Braemar Country Club
Campamento Big Brothers & Sisters, Campamento Painted Turtle*
Competencia de bicicletas de California
Convención Anual de NHF, Anaheim, CA
Caminata de Hemofilia – Crescent Bay Park, Santa Monica
Los Angeles, Inland Empire, Orange County, Santa Barbara/Ventura*
• *Fechas y lugares pueden cambiar- (SD- Sera Determinado)
www.hemosocal.org Teléfono: (323) 525-0440 Fax: (323) 525-0445
28
HemophiliAction