HemophiliAction - Hemophilia Foundation of Southern California

HemophiliAction
A publication of the Hemophilia Foundation of Southern California Volume 9 • Issue 6 • Spring 2014
Celebrating Our 60th Anniversary
Hemophilia Foundation
of Southern California
6720 Melrose Avenue
Hollywood,CA 90038
Tel: 323-525-0440
Fax: 323-525-0445
[email protected]
www.hemosocal.org
“My past has not
defined me, destroyed
me, deterred me, or
defeated me; it has
only strengthened
me.”
- Steve Maraboli
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
Richard Metz, President
Judy Mangione,
Secretary Jorge Catedral,
Advocacy Chair
Michael Franzen,
Treasurer Kevin Lee
Doris Quon, MD,
Medical Representative
Staff
Executively Speaking
A Dream Come True
Happy 60th Birthday to the Hemophilia Foundation of
Southern California.
In 1954, parents united to provide quality care for their
children. They established the Foundation and worked
tirelessly to see their dream come true. Their dream of a
Hemophilia Treatment Center. As we move forward we
honor our past. To honor the lives lost, the The Hemophilia
Foundation is supporting the Living Memorial. Please see
the article in this newsletter providing more information on
the Living Memorial. I ask all of you to submit the names of
your loved ones to be memorialized on the Living Memorial.
All of our families today join you in honoring and keeping
the memory of all in our hearts forever.
Several events this year will focus on the history of
Hemophilia. At our Family Information Day, Jeanne White
Ginder will be our Special Guest and share with us the
legacy of her son Ryan White.
Coeurage, a theatre group will be performing the play “The Yellow Boat” about a young boy with
hemophilia in the 1980’s.
THE YELLOW BOAT is based on the true story of David and Sonja Saar’s son, Benjamin, who was
born with congenital hemophilia, and died in 1987 at the age of 8 of AIDS related complications. A
uniquely gifted visual artist, Benjamin’s buoyant imagination transformed his physical and emotional
pain into a blaze of colors and shapes in his fanciful drawings and paintings. A Scandinavian folksong
tells of three little boats: “One was blue, one was red, and one was yellow as the sun. They sailed far out
to sea. The blue one returned to the harbor. The red one sailed home too. But the yellow boat sailed up
to the sun.”
And the yellow boat filled itself with love.” Come aboard for the voyage of Benjamin, the yellow boat.
THE YELLOW BOAT is “a glorious affirmation of life,” told by 8-year-old Benjamin, touching on
the healing powers of art, family, and community. It is a celebration of the strength of children and an
inspiring piece for all ages.
Linda Corrente, Executive Director
Charles J Cook, Social Worker
On May 17, the Hemophilia Foundation will partner with The Yellow Boat to host an Art In the Park
for the bleeding disorder community followed by a performance of the play.
Special Thanks
March was Hemophilia Awareness Month and April 17 was World Hemophilia Day. Southern
California joined in promoting awareness with children from our area taking part in a National Public
Service Announcement for The World Hemophilia Federation.
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
The kids had a wonderful “on camera” experience with a professional production company, and will be
playing an important part of helping kids like themselves all over the world.
On April 17, Alex and Evan Borstein, brother and sister were special guests on the Television program”
The Doctors” speaking of their life and experiences with hemophilia.
Let’s keep the awareness going, be a part of our Instagram page, bleeding for change. Form a walk
team and share your story with everyone, Why you walk. Every step you take is success. As we move
forward let’s honor our past and the very difficult road our families walked, the steps were heavy and
the road painful and hearts were broken and lives lost for all that enjoy the life that they dreamed for
their children.
Warmest wishes,
Linda Corrente
Executive Director
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HFSC President, Richard Metz, MD
The National Hemophilia Foundation’s (NHF) Meritorious Service Award in Honor of
Loras Goedken for Outstanding Leadership Service is given annually to a person who
has contributed his or her own personal time and energy on a national scale to advance
research, education and advocacy on behalf of the bleeding disorders community without
personal reward or financial gain.
In 2013, Richard J. Metz, MD, FACP, was the recipient of the Meritorious Service Award
in Honor of Loras Goedken for Outstanding Leadership Service for his efforts to educate
and bring about awareness of bleeding disorders. When Dr. Metz’s son Michael was
born with severe hemophilia in 1987, Dr. Metz researched and found the best care for
Michael. He learned about the Hemophilia Foundation of Southern California (HFSC)
at that time and stated, “I want to become involved and help others.” Today, Dr. Metz
still remains a tireless leader, advocate and volunteer for raising awareness and funds for
the bleeding disorders community. He remains an advocate and leader in the bleeding
disorders community on a national level, and shares NHF’s mission with as many people
as he can, while raising awareness and funds about bleeding disorders.
In Memory & In Honor
Donor Recognition
Reconocimiento de Donanes 2014
Donations listed are from –December 2013 - March, 2014
In Honor:
Mark and Philip Leone
Scott Caswell
Miguel Maldonado Jr
Sergio & Christina Castaneda
Allison Ennis
Mary Ennis
In Memory:
Michael Schmidt
Sandra Schmid
Mike Rose
Benjamin D Rose & Pamela Rose
Verne Hayes & Chris Hayes
Terry Hayes & Richard Horner
Nicholas Lee
Patricia Lee
Nick & Louis Frigone
Beverly J. Frigone
Joe Craft
Deena and Walter Fernandez
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California Health & Advocacy Forum
This year has been off to a great start and we have
many more events planned! We kicked-off 2014 with
the California Health & Advocacy Forum hosted
on February 15, at The Ronald Reagan Presidential
Library. Community members were presented with
many important issues regarding hemophilia awareness
and legislative action in 2014. Presentations included:
“Overcoming Challenges in Hemophilia” by Maria Perez,
Pfizer; “The Power of a United Voice” by Tony Maynard,
Hemophilia Council of California; “The Affordable Care
Act and Hemophilia” by Elizabeth Stoltz, Baxter; and
“Covered California- The Applications” by Mindy Palka
Chris, Global/Pexa Insurance Agent. Afterwards, those
who attended were invited to explore the museum and all
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of its presidential exhibits including a tour of Air Force
One.
We would like to thank our speakers for joining us from
all over the State to speak on behalf of the hemophilia
community. We would also like to thank our panel for
fielding questions from our members and giving positive
answers to difficult questions which affect the community
in their struggle to receive proper support and care.
We would also like to thank our title sponsors Pfizer and
Novo Nordisk for providing us with the opportunity to
stage this event along with our co-title sponsor Baxter
Bio-Science.
Foro de Salud y Advocación de California
¡Este años ha empezado en una gran forma, y tenemos
muchos más eventos planeados! Empezamos el 2014
con el Foro de Salud y Advocación de California en
febrero 15, en la Biblioteca Presidencial de Ronald
Reagan. Miembros de la comunidad fueron presentados
con información importante sobre hemofilia y acciones
legislativas en el 2014. Presentaciones incluyeron:
“Sobrepasar los Retos de Hemofilia” por Maria Perez,
Pfizer; “El poder de Voces Unidas” por Tony Maynard,
del Consulado de Hemofilia; “El Acto de Cuidado de
Salud y Hemofilia” por Elizabeth Stoltz de Baxter’ y
“Covered California-la Aplicación” por Mindy Palka
Chris, Global/Pexa Agencia de Seguros. Después,
aquellos que participaron fueron invitados a explorar el
museo y todas las exhibiciones presidenciales, incluyendo
el Avión Air Force One.
Les queremos agradecer a los presentadores por unirse
con nosotros de todo el estado para hablar por la
comunidad hemofílica. También le queremos agradecer
a nuestro panel por reunir preguntas de nuestros
miembros y por dar respuestas a preguntas difíciles, las
cuales afectan la comunidad en su reto en recibir apoyo y
cuidado.
También les queremos agradecer a nuestros
patrocinadores de título Pfizer y Novo Nordisk por
proveernos la oportunidad de tener este evento al lado de
los patrocinadores de título Baxter Bio-Science.
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Why I Walk
Krystal Castaneda, Team Captain for Leonardo’s Fun Factors
Well, where do I start? I had nose bleeds when I was little, but at the age
of 10 when I started menstrual it was really heavy, I was embarrassed
to tell anyone. It would last 7-8 days. Manny and I met in 2007 after we
got married in August 2008, we found out I was pregnant. During my
pregnancy I bleed a little, yet the doctor didn’t do anything. Manny at
times would bleed from his nose and have random bruises. He didn’t think
anything of it sense he said he used to get them when he was younger.
While I was having Leonardo, his head got stuck and I needed to have a
C-section. I felt like I was dying. I couldn’t breathe, my hemoglobin was at
five. It was awful, all of the doctors said (because I was 18 at the time) “oh
your young you’ll make up the blood fast” and just gave me iron pills. It
was months before I started feeling better, I felt like I was going to die.
When Leonardo was born he had Jaundice, then he had colic. At three
months old he had his first nose bleed. I thought I hurt him when I was
cleaning his nose, but at five months he had another one and at that point
they started lasting longer and becoming more frequent. I got scared when
he was about a year old; he had his first fifteen minute nose bleed. We took
him to the ER and all they said was “he is probably picking his nose”. As a
mother that spent all day with her child, I knew he was not a nose picker,
so I followed with his regular doctor the next week and they said “oh it’s
the cold weather apply Vaseline’. That did not work, it happened more
and more. We saw four different doctors in the same medical group and
they were not paying attention. I almost got kicked out of that medical
group because I wouldn’t take “nothing’s wrong with him” for an answer.
It was not until we saw a new doctor there. He recommended doing some
blood work and sent him to an E.N.T. We said, “blood work what?” and
about two weeks later the same doctor called us to tell us it looks like he
might have a bleeding disorder. I started to cry, my husband was driving.
We pulled over to finish talking to the doctor. It was a Friday and that
Monday, I got a call from the hematologist saying we needed to take him
to get some blood work the next day, it moved so fast from that point.
Manny and I got blood work done also and that determined that I have
a bleeding disorder. Also it explained a lot on my part, at that moment. I
found out that the reason why I was having a lot of C-section pain was
because the bleeding disorder caused a lot of scar tissue in my uterus
and the doctor told me there is a 78% chance I will not have another
baby. So as time went on I told Manny to get tested again for a bleeding
disorder and after a lot of testing, they think he has either VWD type 2n
or hemophilia. It’s tough to deal with the three of us having a bleeding
disorder, since we don’t get that much support from our family’s because
no one else on either side have it.
Leonardo is the strongest person we have ever known, even though he is
always anemic and has nose bleeds and bruises he always wears a smile.
When Leonardo goes back to his doctor, there going to do more tests to
make sure which type he is.
¿Por Que Camino?
Krystal Castaneda, Capitán de Grupo de Leonardo’s Fun Factors
¿En dónde empiezo? Tuve un sangrado en la nariz cuando estaba
pequeña, pero a la edad 10 años cuando empecé la menstruación era
bastante y tenía vergüenza en decirle a alguien ya que duraban 7-8
días. Manny y yo nos conocimos en el 2007 después nos casamos en
agosto 2008, y nos dimos cuenta que estaba embarazada. Durante
mi embarazo sangre un poco, pero el doctor no hizo nada. Manny
muchas a veces sangraba de la nariz y tenía varios moretones. Él no
pensaba que era nada severo y se acostumbró a tenerlas cuando estaba
pequeño. Cuando estaba teniendo a Leonardo, la cabeza se atoro y
tuve que tener una cesárea, me sentí como que me estaba muriendo.
No podía respirar, mi hemoglobina bajo a cinco. Fue horrible, todos los
doctores dijeron (tenía 18 años en este tiempo) “Tu estas joven, harás
mas sangre rápido” y solo me dieron píldoras de hierro. Fueron meses
antes de que me sentía mejor, me sentía que me moría.
Cuando Leonardo nació tenia ictericia y cólico. A los tres meses tuvo
su primer sangrado de la nariz, pero a los cinco meses tuvo otra y a
ese punto empezaron a durar más tiempo y a ser más frecuentes. Me
asuste porque cuando tenía más o menos un año, tuvo una que le duro
quince minutos. Lo llevamos a la sala de emergencias y lo que nos
dijeron era que probablemente se estaba “tocando la nariz.” Como la
mamá quien pasaba todo el día con su hijo, yo sabía que él no andaba
tocándose la nariz, ya que hable con el doctor regular la siguiente
semana y me dijeron “Es por los días están fríos, ponle vaselina.” Eso
no trabajo, y volvió a ocurrir. Vimos a cuatro doctores diferentes en
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el mismo grupo médico y no estaban prestando atención. Casi me
removían de este grupo medico ya que no aceptaba la repuesta “él no
tiene nada.” No fue hasta que vimos a un nuevo doctor en este grupo
médico. Él recomendó análisis de sangre y lo envió a un especialista de
la nariz. Dijimos, “¿análisis de sangre, qué?” y después de dos semanas
el mismo doctor nos llamó a decirnos que parecía que teníamos
una enfermedad sanguínea. Empecé a llorar, mi esposo manejando.
Paramos el carro al lado de la carretera para terminar en hablar con
el doctor. Fue un viernes y ese lunes, me llamo el hematólogo diciendo
que lo teníamos que llevar a más análisis de sangre y todo se movió
rápido después de este punto.
Manny y yo tuvimos que tener análisis de sangre también y fue
determinado que yo también tenía una enfermedad sanguínea. Lo cual
me explico bastante. Me di cuenta que la razón por la cual tuve mucho
dolor por la cesárea fue por mi enfermedad sanguínea, la cual causo
la cicatrización en mi útero y el doctor me dijo que hay un 78% que
no puedo tener otro bebe. Ya que el tiempo pasó le dije a Manny que
se hiciera el análisis de la enfermedad sanguínea y después de varios
análisis, piensan que él tiene VWD tipo 2n o hemofilia. Es difícil lidiar
con los tres con una enfermedad sanguínea ya que no tenemos mucho
apoyo de nuestra familia porque nadie más de nuestro lado la tiene.
Leonardo es la persona más fuerte que conozco, aunque el siempre
esta anémico y tiene sangrado de la nariz y moretones siempre sonríe.
Cuando Leonardo le va a hacer más análisis para ver qué tipo es.
For more information, contact your
Baxter representative today:
Mariellyn Swims
Phone: (312) 343-8496
E-mail: [email protected]
To learn more, visit www.RIXUBIS.com.
HemophiliAction
Baxter and Rixubis are trademarks of Baxter International Inc.
USBSMG45130004 © Baxter Healthcare Corporation. 2013
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6th Annual Southern California’s Hemophilia
and Bleeding Disorder Walk At the Beach
Join us this year for our 6th Annual Hemophilia Walk! The
walk will again be hosted at the beach, some come and leave your
footprint in the sand. There will be fundraising fun, entertainment,
music, and more. Save the date!
Last year we raised over $65,000. Your help and dedication this
year will help us go above and beyond last year’s achievement!
A new incentive program has been put in place this year…You
helped us raise much needed funds in 2013 and we need your help
again! We are excited to announce our partnership with Turnkey
promotions to offer some great incentives at key fundraising levels
for Walk. The more you fundraise, the bigger the prize, get started
today! Examples of prizes include $250 for headphones, $1,000 for
a duffel bag, and $10,000 for a Kindle Fire & case.
There are several ways to get involved: You can form teams, join
an existing team, represent as an individual, fundraise, as well as
volunteer! If you need help setting up your team page, we can help
in the office!
We can send you a waiver form and then you will be all set! Call
the office at 323.525.0440 to register or visit http:hemophilia.org/
walk/ and click on “CA, Los Angeles”. Also check out our new
Instagram page, bleedingforchange. See you at the Beach.
Why I Walk
My name is Fernando Alcantara. I am 11 years old. Why did I walk the "Hemophilia Walk"? Because
the Hemophilia Foundation had done many things for me, especially in avocacy and educating us.
I am very thankful. 20 people were on my team, my Mom, Virna, my Dad, Temo, older brother
Fabian, and older sister Fatima, the rest were my relatives, aunts, uncles, cousins and lots of friends.
Thank you!!
Fernando Alcantara
Virna Alcantara
Bleeding For Change
Sangrando por Cambio
We’re on Instagram! That’s right- we’ve finally joined the
Instafamily and want you to get involved. Not familiar with
Instagram? Not a problem. Here’s a quick synopsis: Instagram is
a photo and video sharing service that enables social networking
amongst a base of over 200 million active users to date. It’s the
fastest growing social media outlet since Facebook, and because
social media has grown to become a very powerful tool for
spreading awareness and advocacy, as well as getting people
excited for upcoming projects, we decided now was the time to
create our account.
! Estamos inscritos en Instagram! Correcto,- finalmente nos
hemos unido a la familia de Instagram y queremos que se
involucre. ¿No está familiarizado con Instagram? No hay ningún
problema. Aquí esta una guía: Instragram es un Sistema de
compartimiento de fotos y video que permite una red de social
con una base de más de 200 millones de usantes activos hasta la
fecha. Es la red social que ha crecido más rápido desde Facebook,
y ya que la red social ha crecido será una gran herramienta para
compartir conocimiento y advocación, y también en animar a
todos sobre proyectos, decidimos que esta tiempo de crear una
cuenta.
We encourage you to do the same. It’s easy to do. Simply
download the Instagram application on your smartphone or
head to Instagram.com and sign up. Then, search for us @
BleedingForChange and click the blue FOLLOW button. It
will turn green which means you’re officially following us on
Instagram. We have more surprises in store. Stay tuned as we
want to keep you in the loop with our featured pictures and
stories of our community. Topics will include everything from
team fundraising, previous walks, families and personal stories of
why we walk.
Follow us to stay updated and connect with your fellow team
captains and beyond. Use the hashtag #whywewalk and
#2014HemophiliaWalk for your chance to be featured in our
newsletter. We’d love to hear your story. HemophiliACTION,
our newsletter is published three times a year so features will vary
based on submissions. See you on Instagram!
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Los animamos a que hagan lo mismo !es fácil! Simplemente baje
la aplicación de Instagram en su teléfono o vaya a Instagram.com
e inscríbase. Luego búsquenos en BleedingForChange y haga clic
en las letras azules FOLLOW. Se convertirá verde lo cual quiere
decir que oficialmente nos está siguiendo en Instagram. Tenemos
más sorpresas pendientes. Esté al tanto ya que los involucramos
en fotos e historias sobre la comunidad. Los temas incluirán todo
desde recolección de fondos caminatas anteriores y familias e
historias personales por que caminamos.
Síganos y manténganse al tanto con sus co-capitanes y más. Use
#whywewalk y #201HemophiliaWalk para una oportunidad
de salir en una de nuestras revistas. Queremos escuchar sus
historias. HemophiaACTION, nuestra revista es publicada tres
veces al año así que los temas cambiaran basados en las historias
que se recibamos.
Summer Camp 2014
We are so excited to welcome campers back home to The Painted Turtle for
summer 2014! This year marks the 10thThe Painted Turtle have partnered
to provide an extraordinary summer camp experience for children with
hemophilia and von Willebrand Disease. Camp will be held July 28 - August
2, 2014, for affected campers ages 7-16. Activity areas include archery, fishing,
boating, high ropes, horses, arts & crafts, woodshop, the pool and more! In
the evenings campers can participate in a campfire, Silly Olympics, Stage
Night and the Pinewood Derby. And the best part of camp is the amazing
friends campers will meet here! Cabins house 9 boys or girls of similar ages
who are cared for by 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 care of any medical needs campers might have while
at camp. We have lots to celebrate in our 10th friendships and 85 Big Stick
awards! Join us for another incredible summer at camp!
You are also invited to The Painted Turtle’s 10 Year Anniversary event
on Saturday, May 17th. The event promises to host fun camp activities,
carnival games, live music and fun for everyone!
For applications and more information:
• Visit http://www.thepaintedturtle.org/campers-families/families/
application/ for our new, online application or contact Donna, Camper
Admissions Coordinator, at [email protected] or at
661.724.1768 ext. 202.
• Visit http://www.thepaintedturtle.org/programs/camp-programs/
leadership-program/ for information on our Leaders-In-Training program
for teen campers, ages 17 and 18.
Campamento de Verano
2014
¡Estamos animados en darles la bienvenida a los campistas de Nuevo
al campamento The Painted Turtle para el verano 2014! Este año
marca el décimo campamento de la Fundación de Hemofilia del Sur de
California y The Painted Turtle se han unido para proveer una experiencia
extraordinaria para niños con hemofilia y von Willbrand. El campamento
será julio 28-Agosto 2, 2014 para campistas afectados de edades 7-16 años.
¡Las actividades incluyen áreas de tiro al arco, pesca, montada en lancha,
cuerdas, caballos, carpintería, natación y mucho más! En las noches,
los campistas participan en la fogata, juegos olímpicos divertidos, y la
competencia de carros de madera Pinewood Derby.
¡Y la mejor parte del campamento son las amistades que conocerán! Las cabañas les dan un hogar a 9 niños o niñas de edades
similares quienes son cuidados por empleados del campamento entrenados profesionalmente enfocados en diversión en una forma
segura y en un ambiente positivo. Doctores y enfermedades están disponibles en The Painted Turtle toda la semana para cuidar
cualquier necesidad mientras están en el campamento. ¡ Tenemos mucho que celebrar en el décimo año del campamento- años
de Pinewood Derby, cienes de amistades y 85 premios de Big Stick. Únase con nosotros para otro año increíble campamento de
verano!
También están invitados al evento de Aniversario 10 de Painted Turtle el sábado mayo 17. El evento promete actividades
divertidas, juegos de carnaval, música en vivo y mucha diversión para todos.
Para Aplicaciones y mas:
• Visite http://www.thepaintedturtle.org/campers-families/families/application/ para nuestra nueva aplicación por internet, o
comuniquese con Donna, Coordinadora de Admisiones al Campamento [email protected] o al 661.724.1768 ext.
202.
• Visite http://www.thepaintedturtle.org/programs/camp-programs/leadershipprogram/ para información sobre el programa de líderes en entrenamiento para campistas 17- y 18.
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NHF 2014 ANNUAL MEETING
NHF is proud to announce its 12th Annual Meeting Educational
Participant Grant for first-time attendees at this year’s 66th Annual Meeting on September 18-20, 2014, in Washington, DC.
This program allows families who have never been able to attend
an NHF Annual Meeting to submit an online application for the
opportunity to receive the necessary funding to attend their first
meeting. The Educational Participant Grant covers hotel, airfare
or mileage. NHF currently provides $35,000 annually to a number
of families who wish to attend the meeting. The Educational Par-
ticipant Grant provides assistance to 25-30 families to attend the
NHF Annual Meeting. The deadline date is Friday, May 2nd.
The online application is available on the NHF Web site, www.
hemophilia.org. If you need a hard copy of the application, please
contact Sonia Roger: [email protected].
For further information, please contact Sonia Roger, NHF Education Coordinator, 1.800.424.2634, ext. 3724.
FDA Approves First Long-acting rFIX Therapy
In March, Biogen Idec announced that the US Food and Drug
Administration (FDA) approved ALPROLIX™, the company’s
long-acting, recombinant factor IX (rFIX) Fc fusion protein
therapy. The product, the first long-acting rFIX therapy, is
indicated for the control and prevention of bleeding episodes,
perioperative (surgical) management and routine prophylaxis in
adults and children with hemophilia B. The therapy has shown
to reduce bleeding episodes with weekly prophylactic infusions.
It is the first significant improvement in hemophilia B therapies
in 17 years.
Approval of ALPROLIX™ was based on Phase 3 results from
the B-LONG clinical studies in adolescents and adults with
hemophilia B. Subjects demonstrated a prolonged circulation
of rFIX in the body, lengthening the intervals between
prophylactic infusions. The median overall dosing interval for
those in the prophylaxis arm was 12.5 days. Further, more than
90% of bleeds were controlled by one infusion of the rFIX
therapy. No participants developed an inhibitor to the product.
“The FDA approval of ALPROLIX is a significant milestone
for the hemophilia B community, and represents an important
first step in our commitment to transform the care of people
with hemophilia,” said George A. Scangos, PhD, chief
executive officer of Biogen Idec. “ALPROLIX offers people
with hemophilia B the ability to prevent or reduce bleeding
episodes with prophylactic infusions starting at least a week
apart. We believe this new therapy will help more people with
hemophilia and their caregivers realize the benefits of this
treatment approach.”
“Hemophilia has a significant impact on people whom it affects,
throughout their lives,” said Patrick F. Fogarty, MD, assistant
professor of medicine at the Hospital of the University of
Pennsylvania, and director, Penn Comprehensive Hemophilia
and Thrombosis Program. “ALPROLIX™ addresses a critical
need by allowing people with hemophilia B to maintain factor
levels with prophylactic infusions once weekly or once every 10
days. We hope this will facilitate use of prophylactic therapy.”
Health Canada also announced the approval of ALPROLIX™
on March 21, 2014. Biogen expects its new product to be
commercially available in May. Sources: Biogen press release
dated March 28, 2014; Business Wire press release dated
March 28, 2014
NHF Highlights Orthopedics Chapter of
Nurses’ Guide
In April 2014, the National Hemophilia Foundation (NHF)
highlighted another new chapter of The Nurses’ Guide to
Bleeding Disorders (NGBD), which provides comprehensive
information and practical ideas to assist nurses at all levels
in caring for patients with bleeding disorders. This chapter,
written by Susan Geraghty, RN, MBA, focuses on orthopedic
issues relevant chronic joint bleeding.
In “Orthopedic Complications and Treatment Related
to Chronic Hemarthrosis,” Geraghty provides a baseline
explanation of target joints and hemophilic arthropathy, the
debilitating and painful joint disease resulting from chronic
bleeding into a patient’s joints such as the knee, elbow, ankle
and hip. She goes on to describe the highly sensitive tools
that can now be employed in joint assessment, including
radiographic imaging [ultrasound, CT scan and magnetic
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resonance imaging (MRI)] and the subsequent application
of effective classification systems/joint scores. Geraghty
also emphasizes the importance of comprehensive care as a
robust response to chronic hemarthrosis and a helpful way to
ameliorate its degenerative affects.
Over the last several years, the NGBD has further evolved into
a readily accessible online resource, serving as an introduction
to nurses new to coagulation and an information source for
more experienced nurses. New chapters, which continue to be
uploaded in downloadable PDF format, cover a wide range of
topics such as von Willebrand disease, rare bleeding disorders,
hepatitis, orthopedics and women with bleeding disorders.
To access and download this and other chapters go to the NHF
web site at www.hemophilia.org.
National Cornerstone Healthcare Services (NCHS) is a
national service company with over 14 years of demonstrated
commitment to the bleeding disorders community. We are
a well-established, extremely professional, experienced and
highly reliable company. We provide individualized service
by supplying not only the products needed, but also offering
options for informed choices regarding healthcare needs.
Barb Pileri, RN
NCHS offers an array of homecare services including
delivery of all brands of product, supplies, and coordination
of nursing services from our Specialty Pharmacy when needed, as well as knowledgeable
reimbursement/insurance assistance. We are fully dedicated to making it possible for those
living with hemophilia and other bleeding disorders to lead a less constrained, fuller and
active life.
Throughout the years of participation with this community, our teams of professionals have
spent much of their personal time actively involved in events such as camps, fund raisers,
treatment center activities, chapter functions, special events, family retreats, holiday parties,
and more. For them, it’s not a job, rather a commitment to serving you, your family and the
community.
At NCHS we pledge to continue offering the highest level of service to our clients. We will
never be simply a shipper of products, but instead see ourselves as part of a comprehensive
care team dedicated to improving quality of life in every way possible. We never stop
learning. Above all else, our focus has been and shall continue to be serving you in a
friendly, professional manner at the local level.
Many of you know Barb Pileri, RN, a longtime member of the
bleeding disorders community. For more information, please
contact her at 805.490.6963.
You may choose to contact the corporate headquarters
in Loma Linda, CA - ask for Barbara Chang.
We look forward to serving you.
NCHS • 24747 Redlands Blvd., Ste B • Loma Linda, CA 92354
Toll-Free: 877.616.6247 • Fax: 877.777.5717
www.nc-hs.com • [email protected]
HemophiliAction
11
As I See It
Jeffrey Moualim
The Living Memorial
Committee of Ten Thousand (COTT) has reached out to the
bleeding disorder community for over 23 years, participating in
collaborative efforts to benefit those with hemophilia. In recent
years, COTT has focused its efforts to build a “living memorial”
to those we have lost far too early to HIV/AIDS and hepatitis
C, and for the families and friends who remember them today.
The Living Memorial project is not an attempt to rekindle the
fires of controversy this tragedy symbolizes, but its mission is
rather to celebrate the lives of the men, women, and children we
miss every day—people who, through their sacrifice, have made
factor VIII and factor IX safer for all of us.
Clotting factor VIII and IX concentrates were developed in
the late 1960s and became available for home use in the early
1970s. For people
with hemophilia, like
me, who were born
in the 1950s when
only fresh frozen
plasma was available
to stop bleeding,
factor concentrate
was a miracle
drug: first, to halt
a bleeding episode,
and ultimately,
through prophylaxis,
to prevent bleeds
from occurring.
Immediate infusion
of factor minimized
joint damage due
to hemorrhaging,
and led to increased
mobility and
less pain, so that
people with hemophilia could lead a more normal life. Factor
concentrates allowed many of us to treat at home instead of
visiting emergency rooms every time we had a bleed. And factor
opened a world of new possibilities to attend college, travel,
and—most of all—become more independent.
Starting in the late 1970s through the mid-1980s, about half
of our community became infected with—and many later
succumbed to—HIV/AIDS and hepatitis C. Those who
survived began a life-and-death struggle. By 1990, with the
inception of COTT, a different kind of battle began: a battle
for the truth, seeking to expose how factor manufacturers had
allowed contaminated plasma to be used in manufacturing
factor VIII and IX. The importance of this fight cannot
be overstated. To this day, COTT labors to make sure an
accurate history remains, always with the mindset that safety
is paramount so that every generation can enjoy the benefits of
factor without fear of blood-borne viruses.
The original founders of the COTT board were all infected
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with HIV, and most were also infected with hepatitis C. Most
of them knew that inevitably they would succumb to AIDS
or liver failure from hepatitis C. Nevertheless, they made
great efforts to ensure that factor products became “cleaner”
for future generations. Though their lives were shortened,
their legacy was lengthened, as they became pioneers in
blood safety. This legacy included working with government
regulatory agencies such as FDA to establish more stringent
regulations that protect the blood-product consumer today. As
a community, we owe a debt of gratitude to all of these people,
living or deceased, for their tremendous commitment and
selfless efforts on our behalf to ensure safer factor products.
We must not forget the lessons of the past. COTT is working
toward building the Living Memorial to honor those who died,
and to give their families and friends a place to visit and reflect
on our fallen heroes. The Living Memorial will have greater
significance if the entire hemophilia community embraces
the idea that all of us—past, present, and future—are in this
struggle together, living
with hemophilia and
remaining vigilantthat
blood products are safe.
Bridges of trust and
respect must be built
between the generations,
because a fragmented
community increases the
chance of an inadequate
response to any potential
new crisis.
Although an official site
has yet to be confirmed at
the time of this writing,
we do know that the
Living Memorial will be
located in San Francisco.
Currently, COTT has
raised over $10,000
(approximately 5% of
what is needed to build the memorial) and we have received
a donation in kind from the architectural firm RRM Design
Group in San Luis
Obispo, California. Under the direction of Eddie Herrera and
his team at RRM, the initial renderings of the Living Memorial
have been completed at no cost.
If you’re interested in contributing to this valuable and
significant project, please visit the COTT website at www.cott1.
org to donate and to see the artists’ renderings of the planned
Living Memorial.
We look forward to the day when a cure is found for
hemophilia, but until that time, let’s honor the men and women
who gave their lives so that we may have fulfilling lives today
and in the future.
Jeffrey Moualim is CFO and fund development coordinator of COTT. He
was cured of hemophilia through a liver transplant, but continues to help
the community.
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HemophiliAction
13
SAVE THE DATE
60th Anniversary Golf and
Tennis Tournament September 29, 2014
Having issues with
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Bayer offers a range of programs that can help you navigate insurance questions about your hemophilia A treatment. If you’re having
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HemophiliAction
SAVE THE DATE
Holiday Party December 13
Puzzling Questions?
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©2014 Kedrion Biopharma, Inc. All Rights Reserved. Printed in USA KT-0051-00-2014
HemophiliAction
15
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
2014 Calendar of Events
April 17
April 27 - 28 May 3 May 5 - 6 May 7 May 17 July 28 - August 2 August 11 - 14
August 17-23 September 18-20 September 26-28 September 29
October 18 August 13 - 15, 2015 World Hemophilia Day
Region IX- San Francisco
Family Information Day (Los Angeles Zoo, Los Angeles, CA)
Future Leaders Day
Legislative Day – Sacramento, CA
Art in the Park and The Yellow Boat Play, Burbank, CA
Camp Blood Brothers & Sisters (Camp Painted Turtle, Lake Hughes, CA)
Sibling Camp (Lake Hughes, CA)
HCC Bike Ride to San Diego
NHF Annual Meeting – Washington, DC
Family Retreat (Camp Hess Kramer, Malibu, CA)
31st Annual Golf and Tennis Classic
2014 Hemophilia Walk (Crescent Bay Park)
NHF’s 67th Annual Meeting (Dallas, TX)
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
Fundación de Hemofilia del Sur de California
Calendario 2014
16
HemophiliAction
Abril 17
Abril 27 - 28 Mayo 3 Mayo 5 - 6 Mayo 7 Mayo 17 Julio 28 - Agosto 2 Agosto 11 - 14
Agosto 17-23 Septiembre 18-20 Septiembre 26-28 Septiembre 29
Octubre 18 Agosto 13-15, 2015
World Hemofilia Day
Región IX- San Francisco
Día de Información Familiar (Zoológico de Los Angeles, CA)
Día de Lideres del Futuro
Día Legislativo – Sacramento, CA
Art in the Park and The Yellow Boat Play, Burbank, CA
Campamento Blood Brothers & Sisters (Camp Painted Turtle, Lake Hughes, CA)
Campamento de Hermanos y Hermanas (Lake Hughes, CA)
Carrera de Bicicleta HCC a San Diego
Reunión Anual de NHF– Washington, DC
Retiro Familiar (Campamento Hess Kramer, Malibu, CA)
Torneo Anual 31st de Golf y Tenis
Caminata de Hemofilia 2014 (Crescent Bay Park, Santa Monica, CA)
NHF’s 67th Annual Meeting (Dallas, TX)
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