The Official Newsletter of the Florida Hemophilia Association

Fall 2016

Teen and Young Adult RetreatLake Wales, FLJanuary 6-8

PEP Train The Trainer en EspañolFort Lauderdale, FLJanuary 20-21

7th Annual Walk in the JungleMiami, FLSunday, April 30

“SAVE THE DATE”

Save the Date

Walk in the JungleWalk in the Jungle

Lace Up Your Sneakers for the

7th ANNUAL

It’s time to start thinking about forming your teamand creative ways to fundraise for the Walk!

The 2017 website is up and running! Get a head start and join today atwww.hemophiliawalk.donordrive.com/event/florida

Sunday, April 30, 2017 • Jungle Island

Executively SpeakingPage 2

Community CornerPage 6, 7, 10, 11

NHF NewsPage 14

FHA Resource CenterPage 15

INSIDE

We welcome back LORENA ESTRADA, WSVN News Anchor/Reporter as the Honorary Walk Chair!

Debbi AdamkinFHA Executive Director

Debbi AdamkinDirectora Ejecutiva de FHA

A new year is upon us! What better timeto initiate positive change? We hadsome great programs in 2016 and withthe year winding down, I would like toextend my dearest gratitude to all of oursupporters, volunteers, and donors whoassisted the chapter in achieving ourgoals, and for providing their time tomake our events victorious. With 2017

rapidly approaching we are thrilled to announce that theNew Year will consist of some fresh and fun programming.

I look forward to seeing you in 2017!

Un nuevo año se nos viene encima! ¿Qué mejormomento para iniciar un cambio positivo? Hemos tenidoalgunos grandes programas en 2016 y el año de labobina hacia abajo, me gustaría expresar miagradecimiento más querido a todos nuestrosseguidores, voluntarios y donantes que ayudaron alcapítulo en el logro de nuestros objetivos y por ofrecersu tiempo para hacer nuestros eventos victorioso. Con2017 acerca rápidamente estamos encantados deanunciar que el año nuevo se consisten en algunosfrescos y divertidos de programación.

Espero verlos en 2016!

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he weather was in our favor this year when FHA hosted its27th 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 lunchsponsored by Alpine Jaguar, mimosas sponsored by Precept Wine,and a Meet and Greet with Billy the Marlin. After bidding on thevarious silent auction items, everyone headed to the golf course fora warm afternoon of fun competition under clear blue skies.Executive Director Debbi Adamkin welcomed the players andthen dispatched everyone to begin the tournament. The day’scontests included CSL’s golf challenge with Perry Parker’s “Beatthe Pro,” “Closest to the Pin,” and “Longest Drive.”

The golfers were all smiles when they later gathered inside ofthe Clubhouse for dinner. The room was filled with cheer, laughter,applause (and some groans!) as the winners were announced forthe raffle and silent auction. Michael Williams, owner ofLifestream Spa & Boutique, was the auctioneer for the night. Withgreat zeal, he called the bids during the live auction and swayedthe golfers to spend for the kids!

The day wouldn’t have been such a tremendous successwithout our dedicated golf committee and devoted volunteers.Likewise, we thank our sponsors and our participants for givingtheir time and treasures to the bleeding disorder community.

ExecutivelySpeaking MensajeEjecutivo

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Swing for the Kids '16 Contest Winners!

Greg Hurdle, Christian Thomson, Judd Hobgood, and Dennis Sweeney

Peter Tsotsos, Bobby Dinicola, JD Harris, and Max Karyo

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

1st Place, Team Shire

2nd Place, Team Planet Golf

3rd Place, Team Hialeah Firefighters Benevolent Association

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Thank you to everyone who helpedmake this year’s golftournament another

success!

TITLE SPONSORShire

MAJOR SPONSORSBayer HealthCareCSL Behring Pfizer

Corporate SponsorsNovo Nordisk Octapharma

Crystal Cup SponsorAptevo TheraputicsBiogen Thrivent Financial

Par SponsorsBioTek reMEDysCottrill’s SPEmbassy Suites by Hilton

Hole SponsorsBioRx Bob and Beth Carlin Morgan-Weiss LLC Sajdera Kim, PLLCSoleo Health

In-Kind SponsorsLago Mar Country ClubMassey Yardley Oak & CanePlanet GolfPrecept WineRed Bull

Golf Shirt SponsorPerri Ellis International

Embroidery SponsorLevy Advertising

Lunch SponsorAlpine Jaguar

THANK YOUSPONSORS!

Debbi Adamkin — Event ChairBrian Anderson — Co ChairChristopher Ricci — Co ChairJohn Novoa

Auction/Raffle Sponsors and Donations

Thank You To Our Golf Committee

Angelique Euro CaféAnthony’s Coal Fired PizzaBest Buy Fort LauderdaleBluefoot Pirate AdventuresBoomers Boca RatonBurgerFiBusch GardensChampionsGate Golf ClubChick-Fil-AChipotle Mexican GrillColor Me MineCoral Ridge Country ClubCountry Club of Coral SpringsCuba LibreDinosaur WorldDisneyEmbassy Suites Ft. LauderdaleEmbassy Suites West Palm BeachFlamingo Beach Resort and SpaFlamingo GardensFlorida PanthersFresh MarketGaylord Palms ResortGolfTecGordon MayburyGrand Palms Golf & Country ClubHilton Miami AirportHomestead-Miami SpeedwayHumberto CapeloIsland Water Sports

Jacaranda Golf Club PlantationJungle IslandKennedy Space CenterLago Mar Country ClubLagunitasLatif's JewelryLifeStream Spa & BoutiqueMango’s Restaurant and LoungeMarcelo HolzingerMiami Dolphins FoundationMiami MarlinsOld Lisbon RestaurantsPalm Beach OperaPanera BreadP.F ChangsPrecept WineRapids Water ParkSeaWorld AquaticaSeaWorld OrlandoStarbucks #08328Tampa Bay BuccaneersTampa Bay RaysThe BiltmoreThe Red Door SpaTotal Wine & MoreTower ClubTrader Joe's Fort LauderdaleTruluck's Fort LauderdaleWinterfest Inc.Zoo Miami

Elsie Acevedo

Karen Alfonso

Barbie Arrebola

Jesus Benitez

Elise Boston

Sheila Brooks

Jeanette Cesta

Ken Crandall

Julie Doar-Sinkfield

Liz Garcia

Yamida Garcia

Myriam Lagomasino

Ginny Liebick

Justin Lindhorst

Barbara Matias

Yinell Nunez

Keri Oliver

Perry Parker

Alex Perez

Doriselle Perez Dwyer

Sally Ricci

Laura Robbins

Barbara Schechter

Jeanine Schmidt

Thank You To Our Volunteers

4 FALL 2016 • LIFELINE

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Women’sRETREAT

his year’s Women’s Retreat took place at thebeautiful Delray Sands Resort in Highland Beach.

The serene getaway began on Friday, December 2nd with adelicious dinner and an activity to break the ice and geteveryone comfortable with each other. To further get theball rolling, we provided a photobooth, which gave theladies a chance to strike their best pose and be silly as theyshifted gears from the work week to a weekend ofrelaxation and education.

Saturday morning began with a healthy breakfast and awalk on the beach, where the women were encouraged to“Be in the Moment.” Dr. Suzanne Stewart expanded on theconcept after everyone returned inside. She urged theparticipants to develop the all-important skill of stopping tosavor the moment, good or bad, and letting go. It is adifficult idea to put into practice, especially during tensetimes, but a couple of participants shared their experiencewith turning the concept into a habit and affirmed that it hasgreatly improved their stress management.

The day continued with a rousing and competitive gameof Jeopardy, led by Maria Santaella, RN, where the ladiesshowed off their knowledge of bleeding disorders. After the

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7FALL 2016 • LIFELINE

winning team was declared, Gina Perez-Wiberg spoke about theimportance of advocating for our children by getting involved with yourlocal chapter. It was a valuable conversation about the different wayssomeone can volunteer their time, talent and/or treasure. After lunch,Lynn Szott, RN presented on health insurance and the changes that maybe on the horizon, which was extremely informative for everyone inattendance. The day ended with a fun raffle and easy-going echoes of“Be in the Moment,” as the women filed out with gratitude andenthusiasm for the program’s continuation.

This program was made possible by a grant from CSL Behring.

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10 FALL 2016 • LIFELINE

HolidayDuolittle 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.

A

THANK YOU SPONSORS!

Guy’s DAY OUT

Submitted by Erick Lutin

My son and I had an excellent time atthe Guy’s Day Out. I had never golfedbefore, so I was pleasantly surprised byhow much I enjoyed it. The eventprovided a great opportunity for me tobond with my son. We had a lot to talkabout afterward, and the excitement andjoy on his face was priceless. I lookforward to participating with him nextyear. Thank you so much CSL Behring andDebbi for all that you do for ourcommunity!

11FALL 2016 • LIFELINE

PEN’s Insurance PulseAsk the ExpertBy Michelle RiceSenior VP, Public Policy & Stakeholder Relations

Q:My insurance company says my brand of factor is non-preferred. Does this meanI have to choose another product?

A: Not necessarily. Most health plans have a drug formulary. A formulary is a list ofmedications your insurance company approves, and will help you pay for. If yourprescribed drug is not on this list, your plan may not cover it, so you may need to payout-of-pocket for the drug.

Formulary lists are regularly reviewed and typically updated at least once a year. Withinthe formulary, medications are usually divided into three or more groups, or tiers. A tieredformulary (also called a preferred drug list or PDL) provides financial incentives forpatients to select lower-cost drugs. For example, under a three-tier formulary, tier 1typically includes generic drugs and has the lowest cost share for you, the insured—maybeonly $10 per prescription. Tier 2 includes preferred brand-name drugs and has a highercost share—maybe $30 per prescription. Tier 3 includes non-preferred brand-namedrugs and has an even higher cost share—maybe $75 per prescription. Other plans havea fourth or fifth tier; these are normally reserved for high-cost specialty medications ordrugs 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 thecost to you. Some health plans require additional steps before allowing you topurchase a non-preferred medication, such as requiring a letter of medical necessityfrom your physician, or requiring you to “fail” on a preferred medication.

The key takeaway: Don’t be discouraged if the medication you want is listed as non-preferred. Remember, if it’s included in the formulary, it’s covered—it just maycome 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 youunderstand your health plan coverage options. Before choosing a plan, review theplan documents to determine how your medication is covered. Factor concentratehas historically been covered under the major medical benefit, but in the past fewyears, we have seen a growing trend to move factor to the pharmacy benefit. This isan important distinction, as it may affect where you can obtain your medication andwhat 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 orother factor products on the formulary list, contact the health plan directly and askif 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 preferredprovider? Do you have out-of-network benefits if you choose to use a non-preferredprovider? Typically, if the medication is covered under the pharmacy benefit, youmust 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 thename and phone number of the representative you spoke to. Ask if therepresentative can direct you to the page in your plan document that explains howand 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 probablycontinue to change. The Affordable Care Act is one of the largest initiatives everpassed in legislation, and we will probably see tweaks and changes for the foreseeablefuture. It’s important to educate yourself, because the goal of these changes is toensure that your health needs are met.

PEN’s Insurance PulsePregúntele al ExpertoPor Michelle RiceSenior VP, Public Policy & Stakeholder Relations

P: Mi compañía de seguros dice que la marca de factor que uso no está en la lista demedicamentos preferentes. ¿Quiere eso decir que tengo que elegir otro producto?

R: No necesariamente. La mayoría de los planes de seguro médico tienen un vademécum demedicamentos. Un vademécum es una lista de los medicamentos aprobados por su compañíade seguros y por los que le ayudará a pagar. Si su medicamento recetado no aparece en esalista, 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 actualizanuna 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 elijanmedicamentos de menor costo. Por ejemplo, en una lista de tres niveles, el nivel 1típicamente incluye medicamentos genéricos y conlleva el menor gasto compartido parausted, el asegurado; quizás solo $10 por receta. El nivel 2 incluye medicamentos de marcapreferentes y conlleva un mayor gasto compartido; quizás $30 por receta. El nivel 3incluye medicamentos de marca no preferentes y conlleva un gasto compartido aunmayor; quizás $75 por receta. Otros planes tienen un cuarto o quinto nivel; estosnormalmente se reservan para medicamentos especializados caros o fármacos querequieren prueba de necesidad médica. En lugar de una tarifa fija, como en los tresprimeros niveles, en los niveles cuatro o cinco la persona tiene que pagar un porcentajedel 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, estácubierto. Recuerde que la diferencia principal entre los medicamentos preferentes y nopreferentes es el costo para usted. En algunos planes médicos, es necesario dar otros pasosantes de que le permitan comprar un medicamento no preferente, como obtener unacarta de necesidad médica de su médico o el requisito de que “no le funcione” unmedicamento preferente.

La enseñanza clave: No se desaliente si el medicamento que quiere aparece en la listacomo medicamento no preferente. Recuerde que si está incluido en la lista demedicamentos, está cubierto. Es solo que podría tener un copago más alto o requerirde 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 deentender las opciones de cobertura de su plan médico. Antes de elegir un plan, reviselos documentos del plan para determinar cómo se cubrirá su medicamento.Tradicionalmente, el concentrado de factor se ha cubierto bajo el beneficio médicoprincipal; pero, en los últimos años, hemos visto una tendencia creciente a pasar el factora los beneficios de farmacia. Esta es una diferencia importante, ya que puede influir endónde usted puede obtener su medicamento y cuál será su parte del costo.

Tome estas medidas para reducir al mínimo los problemas asociados con la obtenciónde su medicamento recetado:

1. Revise la lista de medicamentos de su plan para ver si incluye su medicamento. De serasí, ¿en qué nivel aparece? ¿Cuánto es su copago? Si no encuentra su medicamento u otrosproductos del factor en la lista de medicamentos, comuníquese directamente con el planmédico y pregunte si el concentrado de factor para autoinfusión está cubierto bajo elbeneficio médico.

2. Averigüe si el plan médico tiene una lista de proveedores dentro de la red. ¿Hay unproveedor preferente? ¿Tiene usted beneficios fuera de la red si elige acudir a un proveedorno preferente? Normalmente, si el medicamento está cubierto bajo el beneficio defarmacia, 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 representanteque 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 probablementeseguirá cambiando. La Ley de Cuidado de Salud Asequible (ACA) es una de las másgrandes iniciativas en ser aprobada en la legislación, y seguramente veremos cambios yajustes en un futuro previsible. Es importante informarse, porque el objetivo de estoscambios es procurar que se satisfagan sus necesidades de atención médica.

NHF • eNews 2015

14 FALL 2016 • LIFELINE

HEMOPHILIA AND BLEEDING DISORDER CLINICS

ABOUT THIS PUBLICATION

Florida Hemophilia Association Office(888) 880-8330

PresidentJon Salk

Executive DirectorDebbi Adamkin(305) 235-0717dadamkin@floridahemophilia.org

National Hemophilia Foundation(800) 424-2634

Hemophilia Federation of America(800) 230-9797

LA KelleyCommunications, Inc.Free resource material on Hemophilia(978) 352-7657

CONTACT NUMBERSMISSION STATEMENT

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

John Hopkins All Childen's Outpatient Care ClinicPediatric Cancer andBlood Disorders Center601 5th Street South,Third FloorSt. Petersburg, FL 33701Phone: (727) 767-4931www.allkids.org

Center for Children’sCancer and BloodDisorders at ArnoldPalmer Hospitalfor Children92 West Miller St., MP 318Orlando, FL 32806Phone: (321) 841-8588www.orlandohealth.com

Joe DiMaggioChildren’s HospitalPediatric Specialty Center1150 N. 35th Ave.Suite 520Hollywood, FL 33021Phone: (954) 986-2234

Lee Memorial HospitalDepartment of PediatricHematology & Oncology9981 So. Healthpark Dr.Suite 156Ft. Myers, FL 33908Phone: (239) 332-1111

Nemours Children’sClinic, JacksonvilleDepartment of PediatricHematology/Oncology807 Children’s WayJacksonville, FL 32207Phone: (904) 697-3789(904) 697-3600www.nemours.com

Nicklaus Children’s HospitalKidz Medical ServicesDivision of Hematology/Oncology3100 SW 62 AveSuite 121Miami, Florida 33155Phone: (305) 662-8360

University of FloridaDepartment of MedicineAdult HemophiliaP.O. Box 100277Gainesville, FL 32610Phone: (352) 265-0725

University of FloridaPediatric Hematology/OncologyP.O. Box 100296Gainesville, FL 32610Phone: (352) 273-9120www.peds.ufl.edu/divisions/hemonc/

Nemours Children’sClinic, OrlandoDepartment of PediatricHematology/Oncology13535 Nemours ParkwayOrlando, FL 32827Phone: (904) 697-3789,(904) 697-3600

Sacred Heart PediatricHemophilia Program,PensacolaPhone: (850) 416-7712

St. Joseph’s Children’sHospitalPediatric HematologyOncology Out-patientClinic3001 W. Dr. MartinLuther King Jr. Blvd.Tampa, FL 33607Phone: (813) 554-8294or (813) 321-6820

The University of MiamiHemophilia TreatmentCenterPediatric Clinic LocationAlex’s Place at Sylvester1475 NW 12th AvenueSuite C103Miami, FL 33136Phone: (305) 689-7210

Adult Clinic LocationACCW-3A1611 NW 12th AvenueMiami, FL 33136Phone: (305) 243-6925www.htcextras.org

USF Adult HemophiliaCenterDepartment of InternalMedicine12901 Bruce B. DownsBoulevard, MDC 19Tampa, FL 33612Phone: (813) 974-1325

LIFE LINE is the officialNewsletter of the FloridaHemophilia Association.It is produced quarterly anddistributed free of charge torequesting members of thebleeding disorder community.

Florida HemophiliaAssociation Headquarters 915 Middle River Drive, Suite 421Ft. Lauderdale, FL 33304Toll Free: (888) 880-8330www.floridahemophilia.org

Translation:Roxanna Delgado

Design and Production:Group M, Advertising & Design305-235-2538

15FALL 2016 • LIFELINE

FHAResourceCenterThe Florida Hemophilia Association, Inc (FHA) is a Not-for-Profit organization that isdedicated to enhancing the quality of life in the bleeding disorders community by creatingprograms and services that provide education, emotional support and advocacy. We arecontributing toward research to ultimately find a cure.

Florida Hemophilia Association(Formerly known as Florida Chapter, NHF)915 Middle River Drive, Suite 421Ft. Lauderdale, FL 33304