The Official Newsletter of the Florida Hemophilia Association
Fall 2016
INSIDE
Executively Speaking
Page 2
Community Corner
ate
D
e
h
t
e
Sav
Lace Up Your Sneakers for the
7th ANNUAL
Page 6, 7, 10, 11
NHF News
Page 14
FHA Resource Center
Page 15
“SAVE THE DATE”
Teen and Young Adult Retreat
Lake Wales, FL
January 6-8
PEP Train The Trainer en Español
Fort Lauderdale, FL
January 20-21
7th Annual Walk in the Jungle
Miami, FL
Sunday, April 30
Walk in the Jungle
Sunday, April 30, 2017 • Jungle Island
It’s time to start thinking about forming your team
and creative ways to fundraise for the Walk!
The 2017 website is up and running! Get a head start and join today at
www.hemophiliawalk.donordrive.com/event/florida
We welcome back LORENA ESTRADA,
WSVN News Anchor/Reporter as the
Honorary Walk Chair!
ExecutivelySpeaking
MensajeEjecutivo
A new year is upon us! What better time
to initiate positive change? We had
some great programs in 2016 and with
the year winding down, I would like to
extend my dearest gratitude to all of our
supporters, volunteers, and donors who
assisted the chapter in achieving our
goals, and for providing their time to
make our events victorious. With 2017
rapidly approaching we are thrilled to announce that the
New Year will consist of some fresh and fun programming.
Un nuevo año se nos viene encima! ¿Qué mejor
momento para iniciar un cambio positivo? Hemos tenido
algunos grandes programas en 2016 y el año de la
bobina hacia abajo, me gustaría expresar mi
agradecimiento más querido a todos nuestros
seguidores, voluntarios y donantes que ayudaron al
capítulo en el logro de nuestros objetivos y por ofrecer
su tiempo para hacer nuestros eventos victorioso. Con
2017 acerca rápidamente estamos encantados de
anunciar que el año nuevo se consisten en algunos
frescos y divertidos de programación.
I look forward to seeing you in 2017!
Espero verlos en 2016!
Debbi Adamkin
FHA Executive Director
Debbi Adamkin
Directora Ejecutiva de FHA
he weather was in our favor this year when FHA hosted its
27th Annual Swing for the Kids Golf Tournament at the
Lago Mar Country Club in Plantation on Monday November 14,
2016. The golfers started the day with a wonderful lunch
sponsored by Alpine Jaguar, mimosas sponsored by Precept Wine,
and a Meet and Greet with Billy the Marlin. After bidding on the
various silent auction items, everyone headed to the golf course for
a warm afternoon of fun competition under clear blue skies.
Executive Director Debbi Adamkin welcomed the players and
then dispatched everyone to begin the tournament. The day’s
contests included CSL’s golf challenge with Perry Parker’s “Beat
the Pro,” “Closest to the Pin,” and “Longest Drive.”
T
The golfers were all smiles when they later gathered inside of
the Clubhouse for dinner. The room was filled with cheer, laughter,
applause (and some groans!) as the winners were announced for
the raffle and silent auction. Michael Williams, owner of
Lifestream Spa & Boutique, was the auctioneer for the night. With
great zeal, he called the bids during the live auction and swayed
the golfers to spend for the kids!
The day wouldn’t have been such a tremendous success
without our dedicated golf committee and devoted volunteers.
Likewise, we thank our sponsors and our participants for giving
their time and treasures to the bleeding disorder community.
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FALL 2016 • LIFELINE
(Continued...)
Swing for the Kids '16
Contest Winners!
1st Place, Team Shire
Greg Hurdle, Christian Thomson, Judd Hobgood, and Dennis Sweeney
2nd Place, Team Planet Golf
Peter Tsotsos, Bobby Dinicola, JD Harris, and Max Karyo
3rd Place, Team Hialeah Firefighters Benevolent Association
Wayne Pflum, Bert Vinas, Paul Abolafia, and Mark Hawkins
Closest To The Pin Winner: Scott Byers
Longest Drive (Men) Winner: Steve Trodick
Longest Drive (Women) Winner: Julianna McCabe
Putting Contest Winner: Andres Gusman
(Continue page 4)
FALL 2015 • LIFELINE
3
(Continued...)
THANK YOU
SPONSORS!
TITLE SPONSOR
Shire
MAJOR SPONSORS
Bayer HealthCare
CSL Behring
Pfizer
Corporate Sponsors
Novo Nordisk
Octapharma
Crystal Cup Sponsor
Aptevo Theraputics
Biogen
Thrivent Financial
Par Sponsors
BioTek reMEDys
Cottrill’s SP
Embassy Suites by Hilton
Hole Sponsors
BioRx
Bob and Beth Carlin
Morgan-Weiss LLC
Sajdera Kim, PLLC
Soleo Health
In-Kind Sponsors
Lago Mar Country Club
Massey Yardley
Oak & Cane
Planet Golf
Precept Wine
Red Bull
Golf Shirt Sponsor
Perri Ellis International
Embroidery Sponsor
Levy Advertising
Lunch Sponsor
Alpine Jaguar
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FALL 2016 • LIFELINE
Auction/Raffle Sponsors and Donations
Angelique Euro Café
Anthony’s Coal Fired Pizza
Best Buy Fort Lauderdale
Bluefoot Pirate Adventures
Boomers Boca Raton
BurgerFi
Busch Gardens
ChampionsGate Golf Club
Chick-Fil-A
Chipotle Mexican Grill
Color Me Mine
Coral Ridge Country Club
Country Club of Coral Springs
Cuba Libre
Dinosaur World
Disney
Embassy Suites Ft. Lauderdale
Embassy Suites West Palm Beach
Flamingo Beach Resort and Spa
Flamingo Gardens
Florida Panthers
Fresh Market
Gaylord Palms Resort
GolfTec
Gordon Maybury
Grand Palms Golf & Country Club
Hilton Miami Airport
Homestead-Miami Speedway
Humberto Capelo
Island Water Sports
Jacaranda Golf Club Plantation
Jungle Island
Kennedy Space Center
Lago Mar Country Club
Lagunitas
Latif's Jewelry
LifeStream Spa & Boutique
Mango’s Restaurant and Lounge
Marcelo Holzinger
Miami Dolphins Foundation
Miami Marlins
Old Lisbon Restaurants
Palm Beach Opera
Panera Bread
P.F Changs
Precept Wine
Rapids Water Park
SeaWorld Aquatica
SeaWorld Orlando
Starbucks #08328
Tampa Bay Buccaneers
Tampa Bay Rays
The Biltmore
The Red Door Spa
Total Wine & More
Tower Club
Trader Joe's Fort Lauderdale
Truluck's Fort Lauderdale
Winterfest Inc.
Zoo Miami
Thank You To Our Golf Committee
Thank You To Our Volunteers
Debbi Adamkin — Event Chair
Brian Anderson — Co Chair
Christopher Ricci — Co Chair
John Novoa
Elsie Acevedo
Thank you
to everyone who helped
make this year’s golf
tournament another
success
!
Ginny Liebick
Karen Alfonso
Justin Lindhorst
Barbie Arrebola
Barbara Matias
Jesus Benitez
Yinell Nunez
Elise Boston
Keri Oliver
Sheila Brooks
Perry Parker
Jeanette Cesta
Alex Perez
Ken Crandall
Doriselle Perez Dwyer
Julie Doar-Sinkfield
Sally Ricci
Liz Garcia
Laura Robbins
Yamida Garcia
Barbara Schechter
Myriam Lagomasino
Jeanine Schmidt
Women’s
RETREAT
T
his year’s Women’s Retreat took place at the
beautiful Delray Sands Resort in Highland Beach.
The serene getaway began on Friday, December 2nd with a
delicious dinner and an activity to break the ice and get
everyone comfortable with each other. To further get the
ball rolling, we provided a photobooth, which gave the
ladies a chance to strike their best pose and be silly as they
shifted gears from the work week to a weekend of
relaxation and education.
Saturday morning began with a healthy breakfast and a
walk on the beach, where the women were encouraged to
“Be in the Moment.” Dr. Suzanne Stewart expanded on the
concept after everyone returned inside. She urged the
participants to develop the all-important skill of stopping to
savor the moment, good or bad, and letting go. It is a
difficult idea to put into practice, especially during tense
times, but a couple of participants shared their experience
with turning the concept into a habit and affirmed that it has
greatly improved their stress management.
The day continued with a rousing and competitive game
of Jeopardy, led by Maria Santaella, RN, where the ladies
showed off their knowledge of bleeding disorders. After the
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FALL 2016 • LIFELINE
(Continued...)
winning team was declared, Gina Perez-Wiberg spoke about the
importance of advocating for our children by getting involved with your
local chapter. It was a valuable conversation about the different ways
someone can volunteer their time, talent and/or treasure. After lunch,
Lynn Szott, RN presented on health insurance and the changes that may
be on the horizon, which was extremely informative for everyone in
attendance. The day ended with a fun raffle and easy-going echoes of
“Be in the Moment,” as the women filed out with gratitude and
enthusiasm for the program’s continuation.
This program was made possible by a grant from CSL Behring.
FALL 2016 • LIFELINE
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Holiday
Duo
A
little rain couldn’t dampen our fun this year! On
Sunday, December 11, the bleeding disorder
community came together at Hialeah Park to celebrate
the holiday season. The children enjoyed getting their
face painted, expressing their creativity through arts &
crafts, and playing games. Everyone captured their
festive memories through our photobooth, but of course
the highlight of the day was the children meeting the
Hialeah Firefighters, who gifted them with presents. This
holiday season, we are thankful to everyone who
continues to support the bleeding disorder community.
THANK YOU SPONSORS!
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FALL 2016 • LIFELINE
Guy’s DAY OUT
Submitted by Erick Lutin
My son and I had an excellent time at
the Guy’s Day Out. I had never golfed
before, so I was pleasantly surprised by
how much I enjoyed it. The event
provided a great opportunity for me to
bond with my son. We had a lot to talk
about afterward, and the excitement and
joy on his face was priceless. I look
forward to participating with him next
year. Thank you so much CSL Behring and
Debbi for all that you do for our
community!
FALL 2016 • LIFELINE
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NHF • eNews 2015
PEN’s Insurance Pulse
Ask the Expert
By Michelle Rice
Senior VP, Public Policy & Stakeholder Relations
Q: My insurance company says my brand of factor is non-preferred. Does this mean
I have to choose another product?
A: Not necessarily. Most health plans have a drug formulary. A formulary is a list of
medications your insurance company approves, and will help you pay for. If your
prescribed drug is not on this list, your plan may not cover it, so you may need to pay
out-of-pocket for the drug.
Formulary lists are regularly reviewed and typically updated at least once a year. Within
the formulary, medications are usually divided into three or more groups, or tiers. A tiered
formulary (also called a preferred drug list or PDL) provides financial incentives for
patients to select lower-cost drugs. For example, under a three-tier formulary, tier 1
typically includes generic drugs and has the lowest cost share for you, the insured—maybe
only $10 per prescription. Tier 2 includes preferred brand-name drugs and has a higher
cost share—maybe $30 per prescription. Tier 3 includes non-preferred brand-name
drugs and has an even higher cost share—maybe $75 per prescription. Other plans have
a fourth or fifth tier; these are normally reserved for high-cost specialty medications or
drugs requiring proof of medical necessity. Rather than a flat fee, like the first three tiers,
fourth or fifth tiers require the individual to pay a percentage of the actual drug cost—
maybe 20% or more. This is called co-insurance.
The good news is that if your medication appears on any of these tiers, it is covered.
Remember that the main difference between preferred and non-preferred drugs is the
cost to you. Some health plans require additional steps before allowing you to
purchase a non-preferred medication, such as requiring a letter of medical necessity
from your physician, or requiring you to “fail” on a preferred medication.
PEN’s Insurance Pulse
Pregúntele al Experto
Por Michelle Rice
Senior VP, Public Policy & Stakeholder Relations
P: Mi compañía de seguros dice que la marca de factor que uso no está en la lista de
medicamentos preferentes. ¿Quiere eso decir que tengo que elegir otro producto?
R: No necesariamente. La mayoría de los planes de seguro médico tienen un vademécum de
medicamentos. Un vademécum es una lista de los medicamentos aprobados por su compañía
de seguros y por los que le ayudará a pagar. Si su medicamento recetado no aparece en esa
lista, es posible que su plan no lo cubra, así que tendría que pagarlo por cuenta propia.
Las listas de medicamentos son revisadas periódicamente y, por lo general, las actualizan
una vez al año. En la lista, normalmente dividen los medicamentos en tres o más grupos,
o niveles. Una lista por niveles (también llamada lista de medicamentos preferidos o PDL,
por su sigla en inglés) ofrece incentivos económicos para que los pacientes elijan
medicamentos de menor costo. Por ejemplo, en una lista de tres niveles, el nivel 1
típicamente incluye medicamentos genéricos y conlleva el menor gasto compartido para
usted, el asegurado; quizás solo $10 por receta. El nivel 2 incluye medicamentos de marca
preferentes y conlleva un mayor gasto compartido; quizás $30 por receta. El nivel 3
incluye medicamentos de marca no preferentes y conlleva un gasto compartido aun
mayor; quizás $75 por receta. Otros planes tienen un cuarto o quinto nivel; estos
normalmente se reservan para medicamentos especializados caros o fármacos que
requieren prueba de necesidad médica. En lugar de una tarifa fija, como en los tres
primeros niveles, en los niveles cuatro o cinco la persona tiene que pagar un porcentaje
del costo del fármaco, quizás un 20% o más. A esto se le llama coseguro.
La buena noticia es que si su medicamento aparece en cualquiera de estos niveles, está
cubierto. Recuerde que la diferencia principal entre los medicamentos preferentes y no
preferentes es el costo para usted. En algunos planes médicos, es necesario dar otros pasos
antes de que le permitan comprar un medicamento no preferente, como obtener una
carta de necesidad médica de su médico o el requisito de que “no le funcione” un
medicamento preferente.
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FALL 2016 • LIFELINE
The key takeaway: Don’t be discouraged if the medication you want is listed as nonpreferred. Remember, if it’s included in the formulary, it’s covered—it just may
come with a higher copay or require additional steps to access it.
Q: How can I make the prescription process easier?
A: Having the right information can save you time and money. Make sure you
understand your health plan coverage options. Before choosing a plan, review the
plan documents to determine how your medication is covered. Factor concentrate
has historically been covered under the major medical benefit, but in the past few
years, we have seen a growing trend to move factor to the pharmacy benefit. This is
an important distinction, as it may affect where you can obtain your medication and
what your cost share will be.
Take these steps to minimize problems associated with filling your prescription:
1. Review your plan’s drug formulary to see if your medication is included. If it is,
at what tier? And how much is your copay? If you don’t see your medication or
other factor products on the formulary list, contact the health plan directly and ask
if factor concentrate for self-infusion is covered under the medical benefit.
2. Ask if the health plan has a list of in-network providers. Is there a preferred
provider? Do you have out-of-network benefits if you choose to use a non-preferred
provider? Typically, if the medication is covered under the pharmacy benefit, you
must use an in-network pharmacy or the plan will not pay.
3. Take notes documenting any calls you make. Include the time and date, and the
name and phone number of the representative you spoke to. Ask if the
representative can direct you to the page in your plan document that explains how
and where factor is covered. Ask if the rep can provide you with written verification.
Healthcare coverage has changed a lot in the past couple of years and will probably
continue to change. The Affordable Care Act is one of the largest initiatives ever
passed in legislation, and we will probably see tweaks and changes for the foreseeable
future. It’s important to educate yourself, because the goal of these changes is to
ensure that your health needs are met.
La enseñanza clave: No se desaliente si el medicamento que quiere aparece en la lista
como medicamento no preferente. Recuerde que si está incluido en la lista de
medicamentos, está cubierto. Es solo que podría tener un copago más alto o requerir
de pasos adicionales para conseguirlo.
P: ¿Cómo puedo hacer que el proceso de obtener mi medicamento recetado sea más fácil?
R: Tener la información correcta puede ahorrarle tiempo y dinero. Asegúrese de
entender las opciones de cobertura de su plan médico. Antes de elegir un plan, revise
los documentos del plan para determinar cómo se cubrirá su medicamento.
Tradicionalmente, el concentrado de factor se ha cubierto bajo el beneficio médico
principal; pero, en los últimos años, hemos visto una tendencia creciente a pasar el factor
a los beneficios de farmacia. Esta es una diferencia importante, ya que puede influir en
dónde usted puede obtener su medicamento y cuál será su parte del costo.
Tome estas medidas para reducir al mínimo los problemas asociados con la obtención
de su medicamento recetado:
1. Revise la lista de medicamentos de su plan para ver si incluye su medicamento. De ser
así, ¿en qué nivel aparece? ¿Cuánto es su copago? Si no encuentra su medicamento u otros
productos del factor en la lista de medicamentos, comuníquese directamente con el plan
médico y pregunte si el concentrado de factor para autoinfusión está cubierto bajo el
beneficio médico.
2. Averigüe si el plan médico tiene una lista de proveedores dentro de la red. ¿Hay un
proveedor preferente? ¿Tiene usted beneficios fuera de la red si elige acudir a un proveedor
no preferente? Normalmente, si el medicamento está cubierto bajo el beneficio de
farmacia, tiene que usar una farmacia dentro de la red o el plan no lo pagará.
3. Tome notas para dejar constancia de todas las llamadas que haga. Incluya la fecha y la hora,
y el nombre y número de teléfono del representante con el que habló. Pídale al representante
que le indique en cuál página del folleto del plan se explica cómo y dónde está cubierto el factor.
Pregunte al representante si puede proporcionarle verificación por escrito.
La cobertura médica ha cambiado mucho en los últimos dos o tres años, y probablemente
seguirá cambiando. La Ley de Cuidado de Salud Asequible (ACA) es una de las más
grandes iniciativas en ser aprobada en la legislación, y seguramente veremos cambios y
ajustes en un futuro previsible. Es importante informarse, porque el objetivo de estos
cambios es procurar que se satisfagan sus necesidades de atención médica.
FHA ResourceCenter
MISSION STATEMENT
The Florida Hemophilia Association, Inc (FHA) is a Not-for-Profit organization that is
dedicated to enhancing the quality of life in the bleeding disorders community by creating
programs and services that provide education, emotional support and advocacy. We are
contributing toward research to ultimately find a cure.
HEMOPHILIA AND
BLEEDING DISORDER
CLINICS
Nemours Children’s
Clinic, Jacksonville
Department of Pediatric
Hematology/Oncology
John Hopkins All Childen's 807 Children’s Way
Jacksonville, FL 32207
Outpatient Care Clinic
Phone: (904) 697-3789
Pediatric Cancer and
(904) 697-3600
Blood Disorders Center
www.nemours.com
601 5th Street South,
Nicklaus Children’s
Third Floor
Hospital
St. Petersburg, FL 33701
Kidz Medical Services
Phone: (727) 767-4931
Division of
www.allkids.org
Hematology/Oncology
3100 SW 62 Ave
Center for Children’s
Suite 121
Cancer and Blood
Miami, Florida 33155
Disorders at Arnold
Phone: (305) 662-8360
Palmer Hospital
University of Florida
for Children
92 West Miller St., MP 318 Department of Medicine
Adult Hemophilia
Orlando, FL 32806
P.O. Box 100277
Phone: (321) 841-8588
Gainesville, FL 32610
www.orlandohealth.com
Phone: (352) 265-0725
Sacred Heart Pediatric
Hemophilia Program,
Pensacola
Phone: (850) 416-7712
St. Joseph’s Children’s
Hospital
Pediatric Hematology
Oncology Out-patient
Clinic
3001 W. Dr. Martin
Luther King Jr. Blvd.
Tampa, FL 33607
Phone: (813) 554-8294
or (813) 321-6820
The University of Miami
Hemophilia Treatment
Center
Pediatric Clinic Location
Alex’s Place at Sylvester
1475 NW 12th Avenue
Suite C103
Miami, FL 33136
Phone: (305) 689-7210
Joe DiMaggio
Children’s Hospital
Pediatric Specialty Center
1150 N. 35th Ave.
Suite 520
Hollywood, FL 33021
Phone: (954) 986-2234
University of Florida
Pediatric Hematology/
Oncology
P.O. Box 100296
Gainesville, FL 32610
Phone: (352) 273-9120
www.peds.ufl.edu/
divisions/hemonc/
Adult Clinic Location
ACCW-3A
1611 NW 12th Avenue
Miami, FL 33136
Phone: (305) 243-6925
www.htcextras.org
Lee Memorial Hospital
Department of Pediatric
Hematology & Oncology
9981 So. Healthpark Dr.
Suite 156
Ft. Myers, FL 33908
Phone: (239) 332-1111
Nemours Children’s
Clinic, Orlando
Department of Pediatric
Hematology/Oncology
13535 Nemours Parkway
Orlando, FL 32827
Phone: (904) 697-3789,
(904) 697-3600
USF Adult Hemophilia
Center
Department of Internal
Medicine
12901 Bruce B. Downs
Boulevard, MDC 19
Tampa, FL 33612
Phone: (813) 974-1325
Do the 5
1 Get an annual comprehensive check-up at a hemophilia treatment
center. 2 Get vaccinated – Hepatitis A and B are preventable.
3 Treat bleeds early and adequately. 4 Exercise to protect your
joints. 5 Get tested regularly for blood-borne infections
CONTACT NUMBERS
Florida Hemophilia
Association Office
(888) 880-8330
President
Jon Salk
Executive Director
Debbi Adamkin
(305) 235-0717
[email protected]
National Hemophilia
Foundation
(800) 424-2634
Hemophilia Federation of America
(800) 230-9797
LA Kelley
Communications, Inc.
Free resource material on
Hemophilia
(978) 352-7657
ABOUT THIS PUBLICATION
LIFE LINE is the official
Newsletter of the Florida
Hemophilia Association.
It is produced quarterly and
distributed free of charge to
requesting members of the
bleeding disorder community.
Florida Hemophilia
Association Headquarters
915 Middle River Drive, Suite 421
Ft. Lauderdale, FL 33304
Toll Free: (888) 880-8330
www.floridahemophilia.org
Translation:
Roxanna Delgado
Design and Production:
Group M, Advertising & Design
305-235-2538
FALL 2016 • LIFELINE
15
Florida Hemophilia Association
(Formerly known as Florida Chapter, NHF)
915 Middle River Drive, Suite 421
Ft. Lauderdale, FL 33304