HemophiliAction - Hemophilia Foundation of Southern California

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HemophiliAction - Hemophilia Foundation of Southern California
HemophiliAction
A publication of the Hemophilia Foundation of Southern California Volume 8 • Issue 4 • Summer 2013
summer
A life without love is like a year without summer.
-- Swedish Proverb.
We worry about what a child will
become tomorrow, yet we forget
that he is someone today.
- Stacia Tauscher
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.
Executively Speaking
Enjoy the Moment
“Each day comes bearing its own gifts. Untie the ribbons.”
--Ruth Ann
Schabacker Summer swiftly
passes and we prepare for
fall and before we know it, it
will be 2014. The Hemophilia
Foundation of Southern
California will celebrate our 60
This will be a momentous time
to celebrate all of you and the
rich history of the hemophilia
community in Southern
California. Please send me
your family photos, articles,
for our celebration, as we want
to celebrate you and your life
stories!
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
Special Thanks
Angie Yanez, Spanish Translation
Linda Corrente, Editor
Mark Elias, Art Director
Hemophilia Foundation of
Southern California
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
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As we close out this year, there
are still a few moments to
share together with you. Join
us at the National Hemophilia
Annual Meeting in Anaheim,
Uniting in Progress on Oct
3-6. One of our leaders will
be honored at the Awards luncheon on Saturday, Oct 5, 2013. Tickets for the
luncheon are twenty dollars.
Meet us shore side on October 19 to leave your footprint in the sand at our
Hemophilia Beach Walk at Crescent Bay Park in Santa Monica. Register now at
hemophilia.org/walk. Our office is happy to assist you in establishing your team
page.
Pack your sleeping bag and save the date for the Family retreat, December 6-8.
It is a rustic setting in Malibu close to the Ventura County line. We have limited
space so call now to reserve your bunk bed.
Please call and e-mail us at 323-525-0440 or [email protected] with your
suggestions and information you would like to share in our newsletter.
Warm Regards
Linda Corrente
Executive Director
Hablando Ejécutivamente
Disfrute cada momento
“Cada día viene con su ofrecimiento de regalos” – Ruth
Ann Schabacker
Mientras el verano pasa rápidamente y nos preparamos
para el otoño, y cuando menos pensemos aquí estará el
2014. La Fundación de Hemofilia del Sur de California
celebrara su aniversario 60 en el 2014.
Esto será un periodo celebración para todos ustedes y
la gran historia de la comunidad de hemofilia del Sur
de California. Por favor envíeme fotos de sus familias,
artículos, para nuestra celebración, queremos celebrarlos
a ustedes y sus historias!
Mientras cerramos este año, todavía hay unos momentos
para compartir juntos. Únase en la Reunión Anual de
Hemofilia en Anaheim, Uniendo en Progreso el Octubre
3-6. Uno de nuestros lideres será honorado en el
almuerzo de Honores el sábado Oct 5, 2013. Los tiquetes
para este almuerzo son $20.
Únase con nosotros al lado de la playa octubre 19 para
dejar su paso en la arena en la Caminata de Hemofilia en
la Playa Crescent Bay Park in Santa Monica. Regístrese
hoy en hemophilia.org/walk. Nuestra oficina le puede
ayudar en establecer su grupo.
Empaque su maleta para dormir y guarde la fecha para
el Retiro familiar, diciembre 6-8. Es unlugar rustico
en Malibu, cerca de la línea del Condado de Ventura.
Tenemos espacio limitado, llamo hoy a reservar su
espacio.
Por favor llámenos y envíenos un correo electrónico
a 323-525-0440 o [email protected] con sus
sugerencia e información que quiera ver en la revista.
Sinceramente
Linda Corrente
Directora Ejecutiva
2013 In Memory & In Honor of Donor Recognition
Reconocimiento de Donanes 2013
Donations listed are from –March – July 15th
In Memory
David Brand
Anita Pinsker
Mark Castle
Evan Borstein
Nickolas & Louis Frigone
Beverly Frigone
Peter Parker
Sandy & Andrew Clark
Todd Pittman
Judith & Wilmer Pittman
Mark Leone Summer Camp Fund
Edward L. Allum
Audio Video Representatives, Inc.
Dr. Gina Brown
Scott Caswell
C F Marketing
Greg Davis
Tim Hill
David Hoag
Michael Jordin
Edward Kemp
Keith Lehmann
Patricia Lehmann
Aida Leone
Catherine Leone
Stacy & Ed Meenan
Keri & Jim Pari
Annette & Michael A. Sajecki
Keith Selby
Sunbelt Associates
Tal, Incorporated
Stephen Trentacoste
Patricia Wakefield
HemophiliAction
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CHPS Certified!
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
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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-MosconeGaramendi 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.
Proud members of the CHPS program, one of the
top four Certified Homecare Company’s recognized
for our performance and quality standards by the
Hemophilia Foundation of Southern California.
Factor Support Network is a patient centered, full service
specialty pharmacy serving the bleeding disorders community
since 1994. We are dedicated to providing comprehensive
care and support to persons with hemophilia and other
bleeding disorders.
Our services include medication therapy management,
coordination of care and ancillary supplies. We maintain
inventory of all factor therapies and assay choices to minimize
delays in your care and promote positive health outcomes.
FSN is an in-network provider for GHPP, CCS and Tri-Care.
We develop an individual relationship with every client to
provide customized services that respond to the complex
needs of hemophilia and other serious disorders.
Toll Free: 877-376-4968
www.FactorSupport.com
Brothers Healthcare is CHPS Certified!
As a premier CHPS certified home care company Brothers Healthcare
has been recognized for providing exemplary service to the bleeding
disorder community. CHPS and Brothers Healthcare are dedicated to
ensuring that patients continue to receive the highest quality of care
and services at an affordable cost. Brothers Healthcare is an integral
part of your healthcare team reaching far beyond the standards of
care as defined by the state of California’s new law AB389.
We are here 24 hours a day, 365 a year. Hemophilia
doesn’t take a break and neither do we.
We provide personalized services to match your
family’s unique needs.
We have reimbursement specialists that track,
navigate, and handle all your insurances issues.
We coordinate nursing services that come to you,
on your schedule.
We offer all factor brands with supplies delivered
on time to your doorstep.
We are community advocates, educators,
volunteers, and your child’s mentor.
24 Hour Toll Free: (877) 276-4248 | www.brothershealthcare.com
Scott Carthey (714) 337-6789 and Kevin Shaughnessy (909) 855-0711
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We are pleased to be recognized as a top
performing service provider to the bleeding
disorder community in Southern California.
•
•
•
•
•
•
We advocate on behalf of patients
We simplify access to product
We provide insurance assistance
Individual packaging & shipping arrangements
Assistance for Spanish speaking persons
CHPS Certified with recognition for quality
performance standards
Se habla español.
For further information, contact Barbara Chang: [email protected]
www.nc-hs.com
Toll-Free: 1.877.616.6247 • Fax: 1.877.777.5717
24747 Redlands Blvd., Suite B • Loma Linda, CA 92354
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
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HemophiliAction
Advocacy Update
Hemophilia Council of California Standards for
Treatment for Hemophilia – Policy Brief
Statement for Standards of Health Care
Until the 1970s, people with severe hemophilia suffered
from uncontrollable internal bleeding, crippling orthopedic
deformities, and a shortened lifespan. More recently, the
production of highly purified blood clotting factors has
provided people with hemophilia and other bleeding disorders
the opportunity to lead normal lives, free of pain and crippling
arthritis. The preferred method of treatment of hemophilia
today is intravenous injection, or infusion, of prescription
blood clotting products several times per week, along with
case management and specialized medical care at a federally
designated regional Hemophilia Treatment Center (HTC).
The Key to the Success of Covered California for People
with Hemophilia Should Include:
and placing Californians with these potentially devastating and
unpredictable disorders in the hand of well-meaning clinicians
who have no expertise in rare blood disorder diagnosis and
management. While most standard insurance plan models also
provide for this direct access to Hemophilia Treatment Centers,
continued access to an HTC as an Essential Health Benefit is
critical. The Hemophilia Council of California seeks to ensure
that this is maintained as a health care benefit under the plans
in CA that roll out in 2014 for newly insured patients. We
specifically request that the Hemophilia Treatment Centers
are in included in the Health Plan networks.
3. Access to a Broad Range of Clotting Factor Products:
There are currently no generics for clotting factor. Patients
have different reactions to different products. HCC believes
it is critical to maintain access to a full range of clotting
factor products for patients with Hemophilia and other
bleeding disorders, as these pharmaceutical products are not
interchangeable.
1. Keeping CCS and GHPP as Safety Net Programs for
People with Hemophilia:
4. Minimizing High Cost of Co-Pays for Specialty Drugs:
The May Revise proposes to fully fund CCS and GHPP as
safety net programs for people with Hemophilia and other
chronic conditions. CCS provides coverage for children with
eligible conditions up to age 21 and GHPP provides coverage
for those 21 and over with eligible conditions. These vital
programs provide “wrap around” coverage and in some cases
full coverage for patients with Hemophilia. Clotting factor is
covered under both of these programs, as well. HCC supports
maintaining these programs.
Pharmacy benefits are cited as an essential benefit by the
federal government. However, co-payment barriers exist today
in many private insurance plans. If the co-payments are not
equivalent to a typical brand name pharmaceutical product,
patient compliance could be at risk. Poor patient compliance
historically has produced some of the most disabled individuals
in the hemophilia and bleeding disorders community. Therefore,
the Hemophilia Council of California seeks to eliminate copayments for clotting factor, as is done in many other countries.
2. Access to Hemophilia Treatment Centers for Medical
Care within the Networks:
The Hemophilia Council of CA supports people with
Hemophilia having, at a minimum, an annual evaluation at a
federally designated HTC in order to maintain positive health
outcomes for these patients. CDC studies determined HTC
team based coordinated care lowers the risk of mortality and
morbidity by 40%. A recent Missouri Medicaid study found
HTC care lowers hospitalization and costs compared to
Managed Medicaid. Patients in California with Hemophilia
and other severe bleeding disorders have this direct HTC
access under the public programs such as the California
Children’s Services (CCS) and the Genetically Handicapped
Persons Program (GHPP). However, Managed Medi-Cal is
disrupting long standing HTC doctor/patient relationships,
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Beach Walk
Dear Walkers, We are up and running!
Our Walk Web site is now live and we need you to:
Register your team
by visiting: http://www.hemophilia.org/walk and clicking on “CA
Los Angeles.” The process is very easy and user friendly. But if you
need help registering, call the office and we will help you!
Spread the word
Let all your friends know that you are registered and raising funds
for hemophilia by updating your Facebook status and sending
e-mails. We will be helping you along the way, so don’t be shy and
ask for help!
Start fundraising
Make a donation today and ask your family, friends and co-workers
to support you initiative.
Need fundraising ideas? Call us and we will help you! Have
fundraising ideas to share? Share them with us and we will share
them with the rest of the walkers! Remember: The more passionate
you are about a cause, the more contagious your enthusiasm
becomes to people you talk to and share our thoughts or beliefs with.
It is never too early to start fundraising! Last year, more than 700
walkers and walk supporters came together to help spread the word
about hemophilia and to raise funds for our cause. Our goal is to
surpass all the success we achieved these past years and we are
counting on your support! We cannot do this alone and need every
bit of help we can get!!!!!
This year, we are taking to the beach to show our support for the
Southern California’s bleeding disorders community. Yes, you heard
it!!! We will be strolling across the white sands of Santa Monica
Beach! Mark your calendars and cancel any previous appointments
you had scheduled for Saturday, October 19!
Camina a la Playa
Apreciados Caminantes, Estamos listos!
Nuestro lugar en la red de la Caminata esta disponible y necesitamos que:
WHAT: 5th annual Southern California’s Hemophilia Wal
WHEN: Saturday, October 19, 2013
check in: 8am 5K walk: 9am
WHERE: Crescent Bay Park in Santa Monica
2000 Ocean Ave Santa Monica, CA 90405
Come walk the extra mile beachside!!! Every step makes a difference
so make yours count: Register and Start Fundraising Today!!!!
Registre su Grupo
Al visitar a: http://www.hemophilia.org/walk y hacer clic, en “CA
Los Angeles.” Es proceso es muy fácil. Pero si necesita ayuda
registrándose, por favor llame a la oficina y le ayudaremos.
Nunca es muy pronto para empezar a recolectar fondos! El año
pasado, mas de 700 caminantes y patrocinadores se unieron para
compartir el mensaje sobre hemofilia y recolectar fondos para la
causa. Nuestra meta es de sobrepasar el éxito que tuvimos los
últimos tres años y estamos contando en su apoyo! No podemos
hacer esto solos y necesitamos cada poco de ayuda que llegue!!
Comparta el Mensaje
Cuéntele a todos sus amigos y amigas que esta registrado y
recolectando fondos para hemofilia al actualizar su pagina de
Facebook y enviar correos electrónicos . Les estaremos ayudando
así que no sea tímido (a) en pedir ayuda.
Este año, estamos llevando la caminata a la playa a demostrar
nuestro apoyo por el Sur de California y la comunidad con
enfermedades sanguíneas. Si así lo escucho, estaremos caminando
en la arena de la Playa de Santa Mónica! Marque sus calendarios y
cancele cualquier plan que tenga ese día, para el sábado octubre 19.
Empiece a recolectar fondos
Haga donaciones hoy y pídale a miembros de su familia, amigos, con
gente en el trabajo, a que le apoyen su iniciativa. Necesita ideas de
como recolectar fondos? Llámenos y le ayudaremos!
Qué: La Quinta Caminata Anual del Sur de California
Cuándo : Sábado, Octubre19, 2013
Registro a : 8am 5K caminata: 9am
Cuándo: Crescent Bay Park en Santa Mónica
2000 Ocean Ave Santa Mónica, CA 90405
Tiene ideas de como recolectar fondos? Compártalas con nosotros
los compartiremos con los otros caminantes. Recuerde: que entre
mas pasión tenga sobre la causa, será mas contagiosos su entusiasmo
y la gente con la que lo comparte creerá en usted.
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Venga y camine en la playa!! Cada paso hace una gran diferencia,
haga el suyo contar: regístrese y empiece a recolectar fondos!!
T:8.375”
S:7.125”
Having issues
with co-pays
or gaps in
coverage for your
hemophilia A
treatment ???
We may be able to help.
Bayer offers a range of programs that can help you navigate insurance questions about
your hemophilia A treatment. If you’re having issues with co-pays or gaps in coverage, we
may be able to offer assistance. Speak with one of our case specialists to find out more.
Call 1-800-288-8374 and press 1 to speak to a trained insurance specialist!
Bayer and the Bayer Cross are registered trademarks of Bayer.
© 2013 Bayer HealthCare Pharmaceuticals Inc. All rights reserved. 04/13 KN10000213A
HemophiliAction
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Education is the Driving Force, Rev Your Engines!
The Hemophilia Foundation of Southern California (HFSC)
held its Annual Family Information Day on Saturday, May 25,
2013. The event was held at the Automobile Driving Museum,
located at 610 Lairport Street in El Segundo, California. With
a “Pit Stop Lunch” and “Second Lap Vendor Booths” the 8:00
A.M. to 2:30 P.M. event served to educate the public about
hemophilia and other bleeding disorders. Tamara Kato, HFSC
President, and 2013 Slate of Board of Directors, presided over
the President’s Annual Report. Thank you to our speakers,
Doris Quon, MD, Director, Hemophilia Treatment Center,
Orthopaedic Hospital; Guy Young, M.D., Director of the
Hemostasis and Thrombosis Center at Childrens Hosiptal,Los
Angeles; James. V. Luck, Jr., M.D., Professor and Residency
Program at the Hemophilia Treatment Center at Orthopaedic
Hospital; and Karen Wyatt-Coleman, M.S.W., Community
Services Director, Helpline Youth aaCounseling, Inc. In
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addition to these “Hemophilia Today” speakers, HFSC
welcomed other exciting speakers to discuss parenting and
living as a teen with hemophilia: CJ Cook, MBA, HFSC
Social Worker; Virna Alcantara, Calvin Dutcher, and Alfred
Coleman.
Numerous awards were distributed, as well, including the Big
Stick Honorees 2012 (Josh Aponte, Maximiliano Fernando,
and Jack Sneedon), and the 2012 Christopher Mark Pitkin
Scholarship Award Winners (Fernando Luna, Richard
Benson, Nicholas Self; Honorable Mention: Jose Flores,
Clayton Ku, Kalvin Vivanco, Nicole Jarboe, Sarah Jarboe,
Farin Gray, Nicole Coppage, Lawrence Gregge, Diego Ibarra,
Kelsey McAdam, and Carl Schwarz).
This HFSC gala really got our motors running!
La Educación es la Fuerza que nos lleva , Prendan su Agnición!
La Fundación de Hemofilia del Sur de California HFSC tuvo
el Día de Información Familiar el sábado mayo 25, 2013. El
evento fue en el Muse de Automóviles Clásicos localizado en
61º Lairport Street El Segundo, con un almuerzo rápido y
mesas de ventas de 8am-2:30pm. El evento sirvió para educar
al publico sobre hemofilia y otras enfermedades sanguíneas.
Tamara Karo, Presidenta y miembro de la Junta Directiva
2013, presidieron el reporte anual . Gracias a los presentadores
la Dra. Quon MD, Directora de Hemostasias & Trombosis
Center at Children’s Hospital : Guy Young MD Director
de Hemostasis & Trombosis Center Children’s Hospital Los
Angeles ; James V. Luck Jr. MD Profesor del Programa de
Residencia & Programa del Centro de Hemofilia del hospital
Orthopedic; y Karen Wyatt-Coleman , M.S.W. Directora
de servicios comunitarios Helpline Youth Counseling Inc.
Adicionalmente a los presentadores de “Hemofilia Hoy.”
HFSC le dio la bienvenida a otros presentadores que
hablaron sobre el ser madre y/o padre, de un hijo con
hemofilia y vivir siendo un joven con hemofilia; CJ Cook,
MBA, HFSC trabajador social ; Virna Alcantara, Calvin
Dutcher y Alfred Coleman. Una variedad de premios fueron
entregados incluyendo premios “Big Stick”2012 (Josh Aponte,
Maximiliano Fernando, y Jack Sneedon) y ganadores de la
beca Christopher Mark Pitkin (Fernando Luna, Richard
Benson, Nicholas Jarboe, Sarah Jarboe, Farin Gray, Nicole
Coppage, Lawerence Gregge, Diego Ibarra, Kelsey McAdam y
Carl Schwarz)
Esta reunión nos prendió los motores!!
HemMobile™:
your personal logging tool
Log infusions, track bleeds, and more regardless of what factor you use or what
type of hemophilia you have.
Developed with feedback from the community, HemMobile™ lets you log and share
information at home or on the go with your iPhone®, iPod touch®, or iPad®.
With HemMobile™ you can:
• Record the date, time, location, and reason for every infusion
• Share reports and information with your care team
• Create a password to protect your data. Pfizer will not collect any of your
personal information unless you choose to enroll in Hemophilia Village
… and more
iPhone, iPod touch, and iPad are trademarks of
Apple Inc., registered in the U.S. and other countries.
App Store is a service mark of Apple Inc.
HEM535016-02 © 2013 Pfizer Inc. All rights reserved.
Printed in USA/January 2013
HemophiliAction
HEM535016-02.indd 1
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4/2/13 2:29 PM
30th Annual Golf and Tennis Classic Luau
We sincerely thank you for your generous contributions and
support to the Hemophilia Foundation’s 30th Annual Golf and
Tennis Classic held on June 10 at the Braemar Country Club
in Tarzana. This momentous occasion could not have been
possible without the support of friends like you, the generous
title sponsorship by Baxter Bioscience, and the hospitality of
Braemar Country Club.
This year’s Luau themed classic was an enormous success! We
had 134 golfers participate in the Classic. Your donations along
with the sponsorship of many companies and groups raised
us over $70,000 at this event to benefit Camp Blood Brothers
summer camp. Together with our yearly fund-raising activities,
this will help to send over 100 kids to camp in 2014.
This year’s Classic included The Golf and Tennis Awards
hosted by Dan Goodwin, Clem Adkins, and Perry Parker
after our memorial dinner and cocktail reception; a live
auction hosted by Keith Lehmann which offered wonderful
items including a Cartier diamond necklace and earrings and
a Louis Vuitton handbag donated from Catherine Leone and
Keith Lehmann. Special thanks to Clean Sweep Supplies, Five
Star Golf, Kenwood USA Corporation for live auction items;
a wonderful lunch provided by TAL, Incorporated; and of
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course, a beautiful 18 hole round of golf at Braemar Country
Club in Tarzana.
This year’s raffle brought us many wonderful gifts from many
of our friends including Roland Neill, Catherine Leone,
Keith Lehmann, Karen Arrieta, Fino Painting & Decorating,
MIDA Industries, California Electrical Services, Prudential,
Cleanroom Services and Halper Fine Art.
Special thanks to our contest sponsors: BJ Hula Girls Rum,
Walgreens, Factor Support Network, Nawgan Drink, and the
always lovely 2013 Laker’s Girls. Your presence and generous
gifts kept all of our golfers happy throughout their play. Also,
we give thanks to Firestone Beer, our Tennis Co-chair Clem
Adkins and Tennis pro Scott Burton. All of your support
helped make this event one of our greatest yet.
We hope everyone who attended had a wonderful day! From
all of us at The Hemophilia Foundation we thank you for your
support and hope to see you all at our 5October which will take
place at Crescent Bay Park on the beach in Santa Monica. So,
put down your clubs for a day, grab your sandals and let’s head
to the beach!
Torneo 30 Anual de Golf & Tenis Clasico y Luau
Sinceramente les agradecemos por su generosidad y
contribuciones y apoyo durante el Torneo 30 de Golf y Tenis
Clásico hecho en junio 10 en el Bramar Country Club en
Tarzana. Esta importante ocasión no pudo haber sido posible
sin el apoyo de amigos como ustedes, la generosidad del
patrocinante Baxter Bioscience y la hospitalidad de Braemar
Country Club.
Este ano el torneo fue de estilo Luau y fue un gran éxito!
Tuvimos 134 jugadores en el torneo clásico. Sus donaciones
y patrocinio de muchas compañías y grupos recolecto fondos
de mas de $70,000 y este evento beneficia el campamento de
verano de Blood Brothers. Juntos nuestros fondos anuales
enviaran a 100 campistas.
El clásico de este ano incluye los premios de golf y tenis con
anfitrión a Dan Goodwin, Clem Adkins y Perry Parker después
de la cena conmemorativa y recepción, la subasta en vivo tuvo
como anfitrión a Keith Lehman el cual ofreció grandes artículos
de subasta donados por Catherine Leone y Keith Lehmann.
Un agradecimiento especial a Clean Sweeps Supplies, Fiva
Star Golf, Kenwood USA Corporations por los artículos para
la subasta. El almuerzo fue proveído por TAL incorporated y
claro el lindo club Braemar Country club en Tarzana.
La rifa de este ano nos trajo muchos regalos y muchos de
nuestros amigos incluyeron a Roland Beill, Catherine Leone,
Keith Lehmann, Karen Arrieta, Fino Painting & Decorating,
MIDA Industries, California Electrical Services, Prudential,
Cleanroom Services & Halper Fine Art.
Un agradecimiento especial a los patrocinadores de BJ Hula
Girls Rum, Walgreens, por sus grandes paquetes de cuidado.
Factor Support Network, Nawgan Drink y como siempre las
hermosas chicas de los Lakers. Su presencia y generosidad
mantuvo a los jugadores felices mientras jugaban. También
agradecemos a Firestone Beer, nuestro director del Torneo de
Tenis, Clem Adkins y jugador profesional Scott Burton. Todo
su apoyo nos ayudo en hacer un gran evento.
También le queremos agradecer a patrocinadores de Birdie :
Aida Leone, Y patrocinadores de Tees Stephen Tentcoste de
Trent Partners & Associates, Brother Healthcare, Octapharma,
Joe Pugliese, THe Hemophilia Aliance Foundation, Red
Chip Enterprise, Miller’s Children’s Hospital, THe Center
for Comprehensive Care & Diagnosis for Inherited Bleding
Disorders, BioRx, National Cornerstone y Biogen Idec.
Esperamos que todos los que participaron hayan tenido un
gran día! De todos de la Fundación de Hemofilia del Sur de
California les agradecemos por su apoyo y esperamos verlos
en al caminata en octubre la cual tomara lugar en Crescent
Bay Park en Santa Monica. Así que guarde el equipo de golf y
agarre sus sandalias para ir a la playa¡
HemophiliAction
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Antiviral Oral Combination Successfully Treats Certain HCV
Patients
A clinical trial last month showed that a once daily, all-oral drug
combination to treat chronic hepatitis C infection (HCV)-Bristol-Myers Squibb’s daclatasvir (NS5A replication complex
inhibitor) and Gilead’s sofosbuvir (nucleotide NS5B inhibitor),
direct-acting viral agents--was effective in all patients. It tested
that drug combination with and without ribavirin, and excluded
interferon, which is notorious for causing debilitating side
effects. Results of the trial were presented by Mark Sulkowski,
MD, professor of medicine at Johns Hopkins University
during the 48th Annual Meeting of the European Association
for the Study of the Liver (International Liver Congress 2013),
April 24-28, 2013, in Amsterdam, The Netherlands.
All 41 study subjects had genotype 1 chronic HCV. More
than 80% had subtype 1a, which is difficult to treat. They
represented HCV patients who did not respond previously to
interferonbased triple therapy using pegylated interferon and
ribavirin, with an approved HCV protease inhibitor, either
boceprevir (Victrelis) or telaprevir (Incivek).
Twelve weeks after the treatment ended, the rates of sustained
viral response (SVR) were 100% in the sofosbuvir/daclatasvir
arm and 95% in the sofosbuvir/daclatasvir/ribavirin arm. SVR
indicates that a patient has “cleared” the virus for at least six
months after completing therapy. It is achieved when viral
levels drop to nearly undetectable levels.
Of the 21 patients who completed 24 weeks of follow-up once
treatment ended, all had undetectable virus, or 100% SVR
in both arms. Researchers reported that the drugs were well
tolerated and there were few side effects.
“These data provide proof-of-concept that the combination of
two potent direct-acting antivirals with different viral targets is
effective in patients who failed [pegylated interferon/ribavirin]
plus a protease inhibitor,” concluded Sulkowski. “We can tell
our patients who failed triple therapy they now appear to have
a path forward toward a cure.”
Source: AIDSmap.com, April 29, 2013
Combinación de medicina por boca Antiviral es Exitosa en
Tratar el virus de Hepatitis C en ciertos Pacientes
Un studio clinico el mes pasado demostró que una medicina
de una vez al dia, con todas las medicinas combinadas en
una, para tartar la infección de hepatitis C (VHC)- hecha por
BristolMyers Squibb’s declatastavir (NS5A replication complex
inhibitor), un instrumento con acceso directo- fue efectivo en
todos lo pacientes. Se hizo el estudio con y sin la combinación
de ribavirin, y excluyo interferon, el cual es notorio en causar
efectos secundarios debilitantes. Los resultados del estudio
fueron presentados por Mark Sulkowski, MD, professor de
medicina en Johns Hopkins University durante la reunión
Anual Europea de la Asociación para Estudios del higado (El
Congreso Internacional del Higado 2013), abril 24-28, 2013 en
Armsterdan, Netherlands.
Todos los 41 sujetos estudiados tenian el genotipo 1 chronico
del VHC. Mas de 80% tenían el subtipo 1a, el cual es dificil
de tratar. Ellos representaron pacientes con VHC que no
respondieron previamente al tratamiento basado de interferon
terapia triple usando el interferon pegilado y ribavirin, con
un inhibidor protease aprobado de VHC, o de boceprevir
(Victrelis) o telaprevir (Incivek).
fueron sostenidos de como respondian al virus (SVR) los cuales
fueron el 100% en la porción de sofobuvir/declatasvir y 95% en
la porción de sofosbuvir/declatasvir/ribavirin. SVR indica que
el paciente esta “libre” del virus por lo menos por seis meses
despues de completer la terapia. She llega a este punto, cuando
los niveles del virus han bajado a niveles indetectables.
De los 21 pacientes que completaron las 24 semanas despues de
que el tratameinto terminó, todos tenian el virus indetectable, o
100% SVR en ambas porciones. Los investigadores reportaron
que toda las medicinas fueron toleradas y con pocos efectos
secundarios.
“Esta información prueba el concepto que la combinación
de dos medicinas potentes actuando como antivirales con
diferentes metas virales tienen efectividad en pacientes que
han fracasado en [interferon/ribavirin pegilado] además de
inhibidor de protease,” concluyo Sulkowski. “Les podemos
decir a nuestros pacientes que fracasaron en la terapia triple
que ahora parece que hay un camino hacia la cura.”
Recurso: AIDSmap.com, abril 29, 2013
Doce semanas despues que el tratamiento terminó, los niveles
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15
Experimental Hemophilia B Gene Therapy Tricks the Immune
System
In July, researchers at The Children’s Hospital of Philadelphia
(CHOP) published the results of a study in which they used
bioengineered decoys as a ruse to foil the immune system. This allowed
for the successful delivery of gene therapy in mice with hemophilia
B, or FIX deficiency. The lead author of the study was Katherine
High, MD, director of CHOP’s Center for Cellular and Molecular
Therapeutics.
High and her team used capsids, the protein shell that encapsulates a
virus, as the decoy. They also used adeno-associated viruses (AAVs)
as delivery vehicles, or vectors, to carry the actual genetic material
that triggers the production of factor IX. AAVs have recently become
the “vector of choice” for researchers because they can deliver the
genetic material into living cells to sustain therapeutic effect without
causing disease. In addition, they can be targeted to liver cells, which
manufacture FIX.
However, one drawback in using injected AAVs is the body’s natural
immune response. In some cases, antibodies are released, neutralizing
the AAVs. To remedy that, investigators injected both empty capsids
and genetically altered AAVs into the mice. The empty capsids
effectively drew antibodies to them and away from the gene therapy.
Quality
Safety
16
©2012 CSL Behring LLC 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901 USA
www.CSLBehring-us.com MTL07-12-0001 7/2012
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This technique also proved effective in follow-up studies performed in
rhesus macaque monkeys. The therapy initiated higher levels of factor
IX production, with no adverse events reported. Although additional
studies, including clinical trials in humans, will be necessary before
such a therapy becomes a reality, the authors are encouraged by these
preliminary findings.
“Our results, which held up over a range of doses, suggest that in
clinical studies, it will be feasible to adjust the ratio of empty capsids
to gene vector doses, depending on an individual’s pre-existing level
of neutralizing antibodies. That means we could personalize gene
therapy to make it more efficient for each patient,” concluded High.
“This work should make it possible to bring effective gene therapy to
most adults with severe hemophilia B. Each patient would receive a
personalized final formulation that contains just the right amount of
empty capsid to neutralize any pre-existing antibody, and allow the
gene-expressing vector to reach the liver.”
The study, “Overcoming Pre-existing Humoral Immunity to AAV
Using Capsid Decoys,” was published in the July 2013 online issue of
Science Translational Medicine.
Source: Science Daily, July 17, 2013
At CSL Behring
Innovation leads the way
Committed to making a difference in patients’ lives
Therapies
Patients
Innovation
“This decoy strategy could be individualized to patients and could
greatly expand the population of patients who may benefit from gene
therapy,” said High. “Right now, 30 to 60 percent of adult patients
develop antibodies that block the ability of an intravenously infused
vector to reach the target cells in the liver. This approach holds the
promise of overcoming this roadblock--pre-existing antibodies--and
allowing successful intravenous gene therapy in virtually all adult
patients.”
As the industry leader in coagulation therapies, CSL Behring
offers the most extensive portfolio of coagulation products
for patients with factor deficiencies, including FI, FVIII, FIX,
FXIII, and von Willebrand factor. And we continue to broaden
our efforts with a number of recombinant factor therapies in
development, including rFVIII, rFVIIa, rFIX, and rVWF.
Life
For more information about our factor products for
hemophilia, von Willebrand disease, and other rare bleeding
disorders, or to learn about our innovative patient programs,
please visit www.cslbehring.com or call consumer affairs at
1-888-508-6978.
HFSC Picnic at Travel Town
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HFSC Picnic at Travel Town
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Therapies
Patients
Innovation
Quality
Safety
Life
At CSL Behring
Innovation
leads the way
Committed to making a difference
in patients’ lives
As the industry leader in coagulation therapies,
CSL Behring offers the most extensive portfolio
of coagulation products for patients with factor
deficiencies, including FI, FVIII, FIX, FXIII, and von
Willebrand factor. And we continue to broaden our
efforts with a number of recombinant factor therapies
in development, including rFVIII, rFVIIa, rFIX, and rVWF.
For more information about our factor products for
hemophilia, von Willebrand disease, and other rare
bleeding disorders, or to learn about our innovative
patient programs, please visit www.cslbehring.com
or call consumer affairs at 1-888-508-6978.
©2012 CSL Behring LLC 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901 USA
www.CSLBehring-us.com MTL07-12-0001 7/2012
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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
August 3
August 12
August 15
August 18 – 24 October 3 – 5 October 19 Dec 6-8
Picnic and Affordable Car Act Presentation *
LAUSD School Nurse Training
Dodger Game
Bike Race
NHF Annual Convention, Anaheim, CA
Hemophilia Walk – Crescent Bay Park, Santa Monica
Retreat, Camp Malibu *
Regional Meetings TBA 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
Agosto 3
Agosto 12 Agosto 15
Agosto 18 – 24 Octubre 3 – 5 Octubre 19 Diciembre 6-8
Picnic y Presentation sobre el Acta de Cuidado Accesible
Entrenamiento de Enfermeras del LAUSD
Juego de los Dodgers
Carrera de bicicletas
Convencion Annual de, Anaheim, CA
Caminata de Hemofilia– Crescent Bay Park, Santa Monica
Retiro Familiar, Campamento en Malibu *
Reuniones Regionales
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
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