The Winning Spirit

NH

F A

nnua

l Con

fere

nce

Fall 2016

Eastern Pennsylvania Chapter of the National Hemophilia Foundation

Victoria Business Center, 1489 Baltimore Pike, Suite 227, Springfield, PA 19064 • 484-445-4282 • www.hemophiliasupport.org2

BoArd oF direCTorS

Leonard M. Azzarano, PresidentThomas DiCamillo, Treasurer Cheryl Littig, SecretaryAndrew Serrill, Finance ChairGeorge Levy, HPPS PresidentPatricia FelthausBernadette Fox Robert Sawyer Kathleen SellHeather VespeAnthony RiccoNoel A. Fleming, Esquire Legal Counsel

STAFF

Curt Krouse, MS, Executive DirectorFae Z. Ehsan, Development ManagerLindsay Frei, Program Manager

The Winning Spirit is a publication of the National Hemophilia Foundation, Eastern Pennsylvania Chapter. The contents of this newsletter may be reproduced freely, but please attribute the source. The material in this newsletter is provided for your general information only. The Eastern Pennsylvania Chapter does not give medical advice or engage in the practice of medicine. EPC under no circumstances recommends particular treatments for specific individuals and in all cases recommends that you consult your physician or local Treatment Center before pursuing any course of treatment.Graphic Artist: www.chaley.com

ePC CouNTy CAPTAiNS

EPC SALUTES OUR HEMOPHILIA TREATMENT CENTERS

upcoming events SEPT 8 EPC MEN’S GRouP MEETiNG – ADAMSTowN

SEPT 13 GoLF CLASSiC – PHoENixViLLE

SEPT 23-25 FAMiLy CAMP – SCHwENSKViLLE

oCT 8 TRiCK oR TRoT 5K – CoLLEGEViLLE

NoV 3 EPC MEN’S GRouP MEETiNG – LoCATioN TBA

NoV 12 TuRKEy TRoT 5K – LANCASTER

DEC 3 HoLiDAy PARTy – PHiLADELPHiA

JAN 7 wiNTER BASH – EAST EARL

Get details on all our events on our website: www.hemophiliasupport.org

Lorie Kerstetter - Counties: Lancaster, BerksFrank Lentini - County: LebanonJolene Scicchitano - Counties: Union, Snyder, Northumberland, Schuylkill, Montour, ColumbiaHolly Coleman - Counties: Potter, Clinton, Centre, Huntingdon, Fulton, Tioga, Lycoming, MifflinAmanda Heisey - Counties: Dauphin, York, Adams, Franklin, Cumberland, Perry, JuniataLinda Parry - Counties: Susquehanna, Wayne, Pike, Lackawanna, Monroe, Wyoming, Luzerne, Carbon, Sullivan, Bradford Melissa Caulder - Counties: Chester, DelawareVickie DiCamillo - Counties: Montgomery, Bucks and PhiladelphiaLillian Diaz - Bilingual (Spanish) Liaison Tina Marzigliano - Counties: Lehigh, Northampton

We have moved!Victoria Business Center, 1489 Baltimore Pike, Suite 227, Springfield, PA 19064 o: 484-445-4282 ; F: 484-445-4284

The Winning Spirit

Fall 20163

Hey

yo what’s up?

EPC is starting a new group and it sounds pretty cool.

Nice! what’s it for?

it’s just like a chance for people our age to hang and make new friends.

Sounds good

Tell Noah and Emma about it. Everyone needs to text Devin at 717-521-3846 and tell him you are interested.

Gotcha

if you are 14 to 22 years old, text devin Kress at 717-521-3846 for more info.

Eastern Pennsylvania Chapter of the National Hemophilia Foundation

Victoria Business Center, 1489 Baltimore Pike, Suite 227, Springfield, PA 19064 • 484-445-4282 • www.hemophiliasupport.org4

event recaps – NHF Annual ConferenceNHF’s 68th Annual Meeting was held at the Gaylord Palms resort and Convention Center in orlando, Florida on July 21st – July 23rd. The theme for this year’s conference was “a brighter future together.” NHF featured three days of educational sessions, presentations, workshops, events, and excellent opportunities for networking. The exhibit hall hosted over 50 vendors and provided interactive booths, activities, food, and games. Families had a chance to learn about the latest advances in research, products, and services offered.

This year, NHF had the opportunity for a joint effort with the World Federation of Hemophilia (WFH) during the World Congress immediately following NHF’s Annual Meeting. This is the first time in over 20 years that the World Meeting was held in the united States.

PP-HEM-USA-0280-01 © 2015 Pfi zer Inc. All rights reserved. November 2015

Scan the QR code or visit Pfi zerFactorSavingsCard.com to download your card today.*

Get your card online now…

Beginning in 2016 (follow these steps):1. Get your prescription for a Pfi zer factor product from your doctor.

2. Visit Pfi zerFactorSavingsCard.com and fi ll out a brief registration form.†

3. Save and print your card right from your computer. The card is now activated.

4. Keep your card and use it for every purchase until the maximum benefi t has been reached or the card has expired, whichever comes fi rst.

This card will be accepted only at participating pharmacies. This card is not health insurance. No membership fees. You will receive a total benefi t of $12,000 per calendar year, or the amount of your co-pay over one year, less a patient fi nancial responsibility of $10 per month, whichever is less.

If you have any questions about the use of the Pfi zer Factor Savings Card, please call 1-888-240-9040 or send questions to: Pfi zer Factor Savings Program, 6501 Weston Parkway, Suite 370, Cary, NC 27513. The Pfi zer Factor Savings Card cannot be combined with other offers and is limited to one per person.

*Terms and conditions apply; visit Pfi zerFactorSavingsCard.com for complete terms and conditions. For commercially insured only. Medicare/Medicaid benefi ciaries are not eligible.†You can also request a card from your doctor, or by calling 1-855-PFZ-HEMO.

Eligible patients can save up to $12,000 annually on co-pay, deductible, and coinsurance costs with the Pfi zer Factor Savings Card.

Save up to $12,000 in 2016!

Benefi ts Eastern Pennsylvania Chapter of the National Hemophilia Foundation

CELEBRATE HALLOWEEN AT THEAT THETrick or Trot5K Run/WalkOctober 8, 2016 Collegeville, PA

Special appearance by Philadelphia 76ers mascot Franklin the Dog

from 8-9 am

PP-HEM-USA-0280-01 © 2015 Pfi zer Inc. All rights reserved. November 2015

Scan the QR code or visit Pfi zerFactorSavingsCard.com to download your card today.*

Get your card online now…

Beginning in 2016 (follow these steps):1. Get your prescription for a Pfi zer factor product from your doctor.

2. Visit Pfi zerFactorSavingsCard.com and fi ll out a brief registration form.†

3. Save and print your card right from your computer. The card is now activated.

4. Keep your card and use it for every purchase until the maximum benefi t has been reached or the card has expired, whichever comes fi rst.

This card will be accepted only at participating pharmacies. This card is not health insurance. No membership fees. You will receive a total benefi t of $12,000 per calendar year, or the amount of your co-pay over one year, less a patient fi nancial responsibility of $10 per month, whichever is less.

If you have any questions about the use of the Pfi zer Factor Savings Card, please call 1-888-240-9040 or send questions to: Pfi zer Factor Savings Program, 6501 Weston Parkway, Suite 370, Cary, NC 27513. The Pfi zer Factor Savings Card cannot be combined with other offers and is limited to one per person.

*Terms and conditions apply; visit Pfi zerFactorSavingsCard.com for complete terms and conditions. For commercially insured only. Medicare/Medicaid benefi ciaries are not eligible.†You can also request a card from your doctor, or by calling 1-855-PFZ-HEMO.

Eligible patients can save up to $12,000 annually on co-pay, deductible, and coinsurance costs with the Pfi zer Factor Savings Card.

Save up to $12,000 in 2016!

Eastern Pennsylvania Chapter of the National Hemophilia Foundation

Victoria Business Center, 1489 Baltimore Pike, Suite 227, Springfield, PA 19064 • 484-445-4282 • www.hemophiliasupport.org6

Congrats to our 2016-2017 college scholarships recipientsAPPlyiNG For ColleGe SCHolArSHiPS - A MoTHer’S PerSPeCTive

by Jolene Scicchitano

As summer comes to an end, thoughts of a new school year bring excitement and anxiety to everyone, especially those living with hemophilia. Whether entering elementary school, high school, or starting that new journey into college, it is important to be prepared. Transitioning to college may be the most stressful, especially when you add the financial burden into the equation. However, there are many resources available to those who have hemophilia to help with the cost of a college education. A few tips to remember:

1. Begin researching and planning early, even before a college has been chosen. Most scholarships have an application deadline, some as early as late winter/early spring.

2. Although scholarship applications vary, most require a verification form from your hemophilia treatment center, a letter of recommendation (may require more than one; for example, a teacher

and a community member), an essay that usually requires answering a specific question, most recent transcript that must include SAT or ACT scores, and volunteer or community service. Give yourself enough time to gather all of the required documents.

3. Apply for many scholarships - hemophilia-related, academic, and extra-curricular. once a college has been chosen, research what scholarships they offer. Although time and effort are necessary in completing scholarship applications, it is well worth every minute spent doing it.

on the ePC website (www.hemophiliasupport.org), scroll over the “Services” tab. “Scholarships” will appear as an option. This page will give you information on the ePC scholarship. you also can scroll to the bottom of the page and click on “national scholarship opportunities”.

Tate HutchinsonFreshmanSt. Joseph’s university

Hannah BrownJuniorMillersville university

Kia EarSophomoreDrexel university

Calvin Conrad-KlineSeniorShippensburg university

Devin Kress SophomorePenn State university

Amy Macaluso SeniorShore Medical Center

Johnny MartinezFreshmanCommunity College of Philadelphia

Kyle StranzSeniorRowan university

Nicholas Snyder SophomoreVillanova university

Tyler Andre Freshman Bucks County Community College

Morgan SmithJuniorRowan university

Evan KerstetterFreshmanPA College of Health Sciences

Ashley Rice Sophomore Harrisburg Area Community College

Michael Parry Junior Penn State university

Matthew Parry Sophomore Penn State university

Courtney WakefieldSophomoreThe Art institute of Philadelphia

Ben ScicchitanoJuniorBloomsburg university

Michael, 30 years old, lives with hemophilia A.

Novoeight® has been shown to provide reliable treatment

0 INHIBITORS WERE CONFIRMEDIn one of the largest clinical trials of a recombinant factor VIII to date, which included 213 previously treated patientsa

You are always looking ahead, so you need a treatment you can rely on. Introducing Novoeight®, an evolution in treatment that had zero inhibitors confirmed.

Novo Nordisk Inc., 800 Scudders Mill Road, Plainsboro, New Jersey 08536 U.S.A.

Novoeight® is a registered trademark of Novo Nordisk Health Care AG. © 2015 Novo Nordisk All rights reserved. 1114-00024065-2 April 2015

Now available

An injectable medicine used to control and prevent bleeding in people with hemophilia A

Visit Novoeight.com to learn about additional features and see how Novoeight® can fit into your world.

Indications and UsageNovoeight® (Antihemophilic Factor [Recombinant]) is an injectable medicine used to control and prevent bleeding in people with hemophilia A. Your healthcare provider may give you Novoeight® when you have surgery.

Novoeight® is not used to treat von Willebrand Disease.

Important Safety InformationYou should not use Novoeight® if you are allergic to factor VIII or any of the other ingredients of Novoeight® or if you are allergic to hamster proteins.

Call your healthcare provider right away and stop treatment if you get any of the following signs of an allergic reaction: rashes or hives, difficulty breathing or swallowing, tightness of the chest, swelling of the lips and tongue, light-headedness, dizziness or loss of consciousness, pale and cold skin, fast heartbeat, or red or swollen face or hands.

Before taking Novoeight®, you should tell your healthcare provider if you have or have had any medical conditions, take any medicines (including non-prescription medicines and dietary supplements), are nursing, pregnant or planning to become pregnant, or have been told that you have inhibitors to factor VIII.

Your body can make antibodies called “inhibitors” against Novoeight®, which may stop Novoeight® from working properly. Call your healthcare provider right away if your bleeding does not stop after taking Novoeight®.

Common side effects of Novoeight® include swelling or itching at the location of injection, changes in liver tests, and fever.

Please see brief summary of Prescribing Information on following page.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Terms and conditions apply.

a People with previous inhibitors and those new to treatment were not included in the trial. People with hemophilia A may develop inhibitors to factor VIII.

Patient Product Information Novoeight® (NŌ-vō-eyt) Antihemophilic Factor (Recombinant)Rx Only This is a BRIEF SUMMARY of important information about Novoeight®. Read the Patient Product Information and the Instructions For Use that come with Novoeight® before you start taking this medicine and each time you get a refill. There may be new information.This Patient Product Information does not take the place of talking with your healthcare provider about your medical condition or treatment. If you have questions about Novoeight® after reading this information, ask your healthcare provider.

What is the most important information I need to know about Novoeight®?Do not attempt to do an infusion yourself unless you have been taught how by your healthcare provider or hemophilia center.You must carefully follow your healthcare provider’s instructions regarding the dose and schedule for infusing Novoeight® so that your treatment will work best for you.

What is Novoeight®?Novoeight® is an injectable medicine used to replace clotting factor VIII that is missing in patients with hemophilia A. Hemophilia A is an inherited bleeding disorder that prevents blood from clotting normally.Novoeight® is used to control and prevent bleeding in people with hemophilia A.Your healthcare provider may give you Novoeight® when you have surgery.Novoeight® is not used to treat von Willebrand Disease.

Who should not use Novoeight®?You should not use Novoeight® if you• are allergic to factor VIII or any of the other ingredients of Novoeight• if you are allergic to hamster proteins

Tell your healthcare provider if you are pregnant or nursing because Novoeight® might not be right for you.

What should I tell my healthcare provider before I use Novoeight®?You should tell your healthcare provider if you• Have or have had any medical conditions.• Take any medicines, including non-prescription medicines and dietary

supplements.• Are nursing.• Are pregnant or planning to become pregnant.• Have been told that you have inhibitors to factor VIII.

How should I use Novoeight®?Treatment with Novoeight® should be started by a healthcare provider who is experienced in the care of patients with hemophilia A.Novoeight® is given as an injection into the vein.You may infuse Novoeight® at a hemophilia treatment center, at your healthcare provider’s office or in your home. You should be trained on how to do infusions by your hemophilia treatment center or healthcare provider. Many people with hemophilia A learn to infuse the medicine by themselves or with the help of a family member.Your healthcare provider will tell you how much Novoeight® to use based on your weight, the severity of your hemophilia A, and where you are bleeding.You may need to have blood tests done after getting Novoeight® to be sure that your blood level of factor VIII is high enough to clot your blood. This is particularly important if you are having major surgery. Your healthcare provider will calculate your dose of Novoeight® (in international units, IU) depending on your condition and body weight.Call your healthcare provider right away if your bleeding does not stop after taking Novoeight®.Development of factor VIII inhibitorsYour body can also make antibodies called “inhibitors” against Novoeight®, which may stop Novoeight® from working properly.If your bleeding is not adequately controlled, it could be due to the development of factor VIII inhibitors. This should be checked by your healthcare provider. You might need a higher dose of Novoeight® or even a different product to control bleeding. Do not increase the total dose of Novoeight® to control your bleeding without consulting your healthcare provider.Use in childrenNovoeight® can be used in children. Your healthcare provider will decide the dose of Novoeight® you will receive.

If you forget to use Novoeight®

Do not inject a double dose to make up for a forgotten dose. Proceed with the next injections as scheduled and continue as advised by your healthcare provider.If you stop using Novoeight®

If you stop using Novoeight® you are not protected against bleeding. Do not stop using Novoeight® without consulting your healthcare provider.If you have any further questions on the use of this product, ask your healthcare provider.

What if I take too much Novoeight®?Always take Novoeight® exactly as your healthcare provider has told you. You should check with your healthcare provider if you are not sure. If you inject more Novoeight® than recommended, tell your healthcare provider as soon as possible.

What are the possible side effects of Novoeight®?Common Side Effects Include:• swelling or itching at the location of injection• changes in liver tests• fever

Other Possible Side Effects:You could have an allergic reaction to coagulation factor VIII products. Call your healthcare provider right away and stop treatment if you get any of the following signs of an allergic reaction:• rashes including hives• difficulty breathing, shortness of breath or wheezing• tightness of the chest or throat, difficulty swallowing• swelling of the lips and tongue• light-headedness, dizziness or loss of consciousness• pale and cold skin, fast heart beat which may be signs of low blood pressure• red or swollen face or hands

These are not all of the possible side effects from Novoeight®. Ask your healthcare provider for more information. You are encouraged to report side effects to FDA at 1-800-FDA-1088.Tell your healthcare provider about any side effect that bothers you or that does not go away.

How should I store Novoeight®?Prior to Reconstitution:Store in original package in order to protect from light. Do not freeze Novoeight®.Novoeight® vials can be stored in the refrigerator (36–46°F [2°C–8°C]) for up to 30 months or up to the expiration date, or at room temperature (up to 86°F [30°C]) for a single period not exceeding 12 months.If you choose to store Novoeight® at room temperature:• Note the date that the product is removed from refrigeration on the box.• The total time of storage at room temperature should not exceed 12 months. Do

not return the product to the refrigerator.• Do not use after 12 months from this date or the expiration date listed on the vial,

whichever is earlier.Do not use this medicine after the expiration date which is on the outer carton and the vial.The expiration date refers to the last day of that month.After Reconstitution (mixing the dry powder in the vial with the diluent):The reconstituted Novoeight® should appear clear to slightly unclear without particles.The reconstituted Novoeight® should be used immediately.If you cannot use the Novoeight® immediately after it is mixed, it should be used within 4 hours when stored at ≤ 86°F (30°C). Store the reconstituted product in the vial.Keep this medicine out of the sight and out of reach of children.

What else should I know about Novoeight® and hemophilia A?Medicines are sometimes prescribed for purposes other than those listed here. Do not use Novoeight® for a condition for which it is not prescribed. Do not share Novoeight® with other people, even if they have the same symptoms that you have. For more information about Novoeight®, please call Novo Nordisk at 1-844-30-EIGHT.More detailed information is available upon request. Available by prescription only.

Revised: 09/2014Novoeight® is a trademark of Novo Nordisk A/S.For information about Novoeight® contact: Novo Nordisk Inc. 800 Scudders Mill Road Plainsboro, NJ 08536, USAManufactured by: Novo Nordisk A/S DK-2880 Bagsvaerd, Denmark© 2014 Novo Nordisk 1214-00024657-1 12/14

The Winning Spirit

Fall 20169

Community Profile - dr. Kathy High

dr. Kathy High started her career studying bleeding disorders, and has since become a world renowned hematologist and developer of new and exciting treatments. The eastern PA Chapter had the privilege of chatting with dr. High about her work and life.

dr. High grew up in North Carolina. She went to Harvard university to earn her A.B. in Chemistry before going to the university of North Carolina—Chapel Hill for medical school, where she was trained in internal medicine. upon graduating from uNC, dr. High continued her studies at yale university where she completed a fellowship in hematology.

After her training in hematology, dr. High’s first faculty position was at uNC-Chapel Hill. At that time, she saw many hemophilia patients with Hiv and AidS, before there were effective treatments. After seven years there, she landed in Philadelphia, when the university of Pennsylvania and the Children’s Hospital of Philadelphia asked her to come work for them as an attending physician and research doctor. “it was a great privilege to work with patients,” dr. High said about her time at uNC-Chapel Hill and Penn. “Seeing patients helped provide context for my research.”

dr. High’s research at Children’s Hospital was focused on developing gene therapy for hemophilia. After several years though, funding for new treatments for hemophilia, including gene therapy, had evaporated. dr. High worked with the leadership at CHoP to begin vector production in the hospital. in addition to hemophilia, their research group worked on a number of other genetically inherited diseases.

dr. High’s new vector-creating lab was doing excellent work in research and development, so they made the decision to move the operations to a new company. This was how Spark Therapeutics was founded.

Spark Therapeutics works to develop novel therapies for genetically inherited diseases. While dr. High’s focus is on Hemophilia A & B, Spark also is working on therapies to help those with Huntington’s disease and Batten’s disease.

“The quality of life for people with hemophilia is much

improved since i first started seeing patients. The adoption of prophylaxis in the u.S. has been a boon for joint health. Spark is working toward gene therapy for people with hemophilia that would allow them to potentially lead normal lives without the need for recurring infusions of factor,” dr. High says. Spark’s hemophilia gene therapy is currently in Stage 1 of the study.

dr. High has also had a long and fruitful relationship with the eastern PA Chapter. “The eastern PA Chapter funded much of the early research at CHoP that i was working on. This chapter has been instrumental in helping research advance and improving the lives of patients,” she said. The eastern PA Chapter still continues to fund research efforts in the region.

When asked about her job, dr. High says, “My favorite part of my job is that i get to work with so many smart, innovative, creative and nice people who all want to do something good for the world.” dr. High is a mother of three adult children, and she likes to read and exercise.

What is HPPS? Hemophilia Patient and Program Support (HPPS) is a 501 (c) (3) charitable and educational organization created by the eastern Pennsylvania Chapter of the National Hemophilia Foundation. HPPS was founded to provide funds for community outreach, education and resources to individuals with hemophilia and von Willebrand disease residing within

the geographic boundaries served by the eastern Pennsylvania Chapter. HPPS is dedicated to ensuring that patients continue to receive the highest quality of care and services at affordable costs. Working in collaboration with the eastern Pennsylvania Chapter, HPPS will provide additional funding to help the Chapter meet patient and program needs.

Participating Companies – Accredo, CVS Specialty, NCHS, option Care provide: • a full range of services to meet your needs

(pharmacy, delivery, support, financial counseling, etc.)

• a toll free number and pharmacists, 24 hours a day, with overnight shipment – regardless of your location

• adequate inventory of factor, supplies and medicines to meet your needs both on a short- and long-term basis

• financial help for patient life needs, when need is determined

• services to people with pre-existing medical conditions

• information about the costs for medications and services and will inform you of any changes to those expected costs

• help with insurance-related issues and notification of any company policy regarding discontinuation of services related to loss of coverage or inability to pay

• notification of all product recalls and withdrawals within one business day

• assurance that your confidentiality will be maintained

At CVS Specialty™, we’ve been helping families like yours for over 30 years. Our caring patient support helps ensure safety, convenient access and satisfaction.

CVSspecialty.com

Karen M. Gingrich Client Relations Executive215-595-4863 karen.mcgoniglegingrich@cvshealth.com

Sheri Reed Client Relations Executive610-357-9985 sheri.reed@cvshealth.com

Trust the Experience

©2016 CVS Specialty. All rights reserved. 75-30419a 072516

Eastern Pennsylvania Chapter of the National Hemophilia Foundation

Victoria Business Center, 1489 Baltimore Pike, Suite 227, Springfield, PA 19064 • 484-445-4282 • www.hemophiliasupport.org12

Family-Style volunteeringGood deedS MulTiPly WHeN you do THeM ToGeTHer

By Amy Lynn Smith

if you’ve ever volunteered, you know how satisfying it can be to help others. When you volunteer as a whole family, everyone reaps the benefits. This contribution creates a greater sense of community while you support places of worship, schools and nonprofit organizations. For many parents, teaching their kids the value of giving to others is as crucial as teaching them their ABCs.

“it’s important to reach out and help others. it’s what life is all about,” says Jolene Scicchitano, a volunteer county captain for the eastern Pennsylvania Chapter of the National Hemophilia Foundation (NHF).

The eastern Pennsylvania chapter has 10 county captains, each of whom coordinates activities in his or her area, often for the benefit of other families with bleeding disorders, says executive director Curt Krouse. There are many ways to volunteer, he says. Ask your NHF chapter, local hospital or hemophilia treatment center (HTC) how you can help.

FUN, FITNESS AND FUNDRAISINgJolene turned to NHF for support after her eldest son Jake, now 27, was diagnosed with severe hemophilia A. She and her husband, Sam, have two other sons with hemophilia: Seth, 25, and Ben, 21.

Fundraising makes it possible for the chapter to help families like the Scicchitanos attend national NHF conferences. it also helps to fund college scholarships like the one now benefiting her sons. So Jolene set her mind on raising funds for the chapter. it started eight years ago with a “Fun and Fitness day” the Scicchitanos organized at the local high school. Activities included mini basketball tournaments and Zumba®. local businesses donated food to sell at the event.

Since then, the annual event has transitioned into a dance. The sons help with tasks from picking up the food and raffle items to collecting money at the door. For the last five years, this dance has raised about $1,200 for the eastern Pennsylvania NHF chapter.

“The chapter helps so many people. it’s taught our boys how good it feels when someone is there for you,” Jolene says. She believes involving her sons in these activities from an early age has made them more empathetic, especially to people with health issues.

WALKINg THE WALKAlison Bartko and her family have taken a similar do-it-yourself approach to volunteering with their local NHF chapter in las vegas. Bartko and her husband, John, have three children: Abigail, 12; emily, 10; and A.J., 2. emily and A.J. both have afibrinogenemia, a type of factor i deficiency. in 2007, the family got involved with a 5K fundraising run and helped raise $3,000 for the Nevada chapter. Motivated by that success, the family now helps with the chapter’s annual walk. “We help with other events, but this is the one we can really do as a family,” says Alison.

Now that the Bartko girls are older, they pitch in by asking for donations from their friends and teachers. The family encourages members of the community to walk for Team emily and A.J. The Bartkos have raised nearly $60,000 in seven years.

The funds support the chapter’s programs, including a summer camp the Bartko daughters attend. But the Bartkos’ primary motivation for volunteering is helping others. “We’re raising our children to see volunteering as something everyone should do,” Alison says. “The fact that they can see their hard work paying off makes it that much more worthwhile.”

Originally Published April 4. 2016 HEMAWARE.org

©2016. Octapharma USA Inc. All rights reserved. Date of preparation: 7/2016. NUW-016-CADr

For the Treatment of Adults and Children with Hemophilia A

The First and Only Recombinant FVIII

Indications and UsageNUWIQ is a Recombinant Antihemophilic Factor [blood coagulation factor VIII (Factor VIII)] indicated in adults and children with Hemophilia A for on-demand treatment and control of bleeding episodes, perioperative management of bleeding, and for routine prophylaxis to reduce the frequency of bleeding episodes. NUWIQ is not indicated for the treatment of von Willebrand Disease.

Important Safety InformationNUWIQ is contraindicated in patients who have manifested life-threatening hypersensitivity reactions, including anaphylaxis, to the product or its components. The most frequently occurring adverse reactions (>0.5%) in clinical trials were paresthesia, headache, injection site inflammation, injection site pain, non-neutralizing anti-Factor VIII antibody formation, back pain, vertigo, and dry mouth. Development of Factor VIII neutralizing antibodies (inhibitors) may occur.

Please see adjacent page for Brief Summary of Prescribing Information.

Antihemophilic Factor (Recombinant) Because you are unique.

References: 1. Sandberg H, et al. Thromb Res 2012; 130:808-817. 2. Casademunt E, et al.. Eur J Haematol 2012; 89:165-176. 3. Kannicht C, et al. Thromb Res 2013; 131:78-88. 4. Valentino LA, et al. Haemophilia 2014; 20:1-9.

Produced in Human Cells Without Chemical Modification or Protein Fusion1-4

For more information, contact your Octapharma Representative:

KAREN BOWEPHONE | 717-395-5887 EMAIL | Karen.Bowe@octapharma.com

HIGHLIGHTS OF PRESCRIBING INFORMATION

These highlights do not include all the information needed to use NUWIQ safely and effectively. See full prescribing information for NUWIQ.

NUWIQ®, Antihemophilic Factor (Recombinant) Lyophilized Powder for Solution for Intravenous InjectionInitial U.S. Approval: 2015

INDICATIONS AND USAGE

NUWIQ is a recombinant antihemophilic factor [blood coagulation factor VIII (Factor VIII)] indicated in adults and children with Hemophilia A for:

• On-demand treatment and control ofbleeding episodes

• Perioperative management of bleeding

• Routine prophylaxis to reduce the frequencyof bleeding episodes

NUWIQ is not indicated for the treatment of von Willebrand Disease.

DOSAGE AND ADMINISTRATION

For intravenous use after reconstitution

• Each vial of NUWIQ is labeled with the actualamount of Factor VIII potency in internationalunits (IU).

• Determine dose using the following formulafor adolescents and adults:

Required IU = body weight (kg) x desired Factor VIII rise (%) (IU/dL) x 0.5 (IU/kg per IU/dL)

• Dosing for routine prophylaxis:

• Frequency and duration of therapy dependson severity of the FVIII deficiency, locationand extent of bleeding, and patient’s clinicalcondition.

DOSAGE FORMS AND STRENGTHS

NUWIQ is available as a white sterile, non-pyrogenic, lyophilized powder for reconstitution in single-use vials containing nominally 250, 500, 1000 or 2000 IU Factor VIII potency.

CONTRAINDICATIONS

NUWIQ is contraindicated in patients who have manifested life-threatening hypersensitivity reactions, including anaphylaxis, to the product or its components.

WARNINGS AND PRECAUTIONS

• Hypersensitivity reactions, including anaphylaxis, are possible. Should symptoms occur, discontinue NUWIQ and administer appropriate treatment.

• Development of Factor VIII neutralizingantibodies (inhibitors) may occur. Ifexpected plasma Factor VIII activity levelsare not attained, or if bleeding is notcontrolled with an appropriate dose,perform an assay that measures FactorVIII inhibitor concentration.

• Monitor all patients for Factor VIII activityand development of Factor VIII inhibitorantibodies.

ADVERSE REACTIONS

The most frequently occurring adverse

reactions (>0.5%) in clinical trials were paresthesia, headache, injection site inflammation, injection site pain, non- neutralizing anti-Factor VIII antibody formation, back pain, vertigo, and dry mouth.

USE IN SPECIFIC POPULATIONS

Pediatric Use: Lower recovery, shorter half life and faster clearance in children aged 2 - ≤12 years. Higher doses and/or a more frequent dosing schedule for prophylactic treatment should be considered in pediatric patients aged 2 to 5 years.

PATIENT COUNSELING INFORMATION

Advise patients to read the FDA-approved patient labeling (Patient Information and Instructions for Use).

Because hypersensitivity reactions are possible with NUWIQ , inform patients of the early signs of hypersensitivity reactions, including hives, generalized urticaria, tightness of the chest, wheezing, hypotension, and anaphylaxis. Advise patients to stop the injection if any of these symptoms arise and contact their physician, and seek prompt emergency treatment.

Advise patients to contact their physician or treatment center for further treatment and/or assessment if they experience a lack of clinical response to Factor VIII replacement therapy, as this may be a manifestation of an inhibitor.

Advise patients to consult with their healthcare provider prior to traveling. While traveling, patients should be advised to bring an adequate supply of NUWIQ based on their current treatment regimen.

Manufactured by:Octapharma ABElersvägen 40SE-112 75, SwedenU.S. License No. 1646

For all inquiries relating to drug safety, or to report adverse events please contact our local Drug Safety Officer: Office: 201-604-1137 | Cell: 201-772-4546 | Fax: 201-604-1141

Distributed by:Octapharma USA, Inc.121 River Street, Suite 1201Hoboken, NJ 07030

Revised September 2015

Subjects Dose (IU/kg) Frequency of infusions

Adolescents [12-17 yrs] and adults 30-40 Every other day

Children [2-11 yrs] 30-50 Every other day or three times per week

NUWIQ is a registered trademark of Octapharma.Issued September 2015.

To report SUSPECTED ADVERSE REACTIONS, contact Octapharma USA Inc. at 1-866-766-4860 or FDA at1-800-FDA-1088 or www.fda.gov/medwatch.

The Winning Spirit

Fall 201615

Community Sportlight – Melina MartinThis interview was conducted with Melina Martin, S.W. Melina is the Social worker at The Children’s Hospital of Philadelphia (CHoP) Hemophilia Treatment Center.

where are you originally from?i am originally from Maine, where i grew up in a small town. i did my undergraduate work at villanova university where i studied Sociology and Spanish. i completed my graduate work in New york at Columbia university School of Social Work. After Columbia, i

came back to Philadelphia, where i live now.

How long have you worked at the CHoP HTC?i’ve been working in Hematology since 2007. initially, i worked with the Thrombosis population and in 2014, i also started working with the bleeding disorder patients.

what initially attracted you to social work?i have always had an interest in helping others. Social work is a broad field and with a social work degree there are many ways that you are able to assist others. i felt as though i would increase my options with an M.S.W. compared with many other degrees.

what do you think are the biggest social issues facing people with bleeding disorders? Chronic conditions are life long, so i think it is best if individuals are able to find a way to incorporate their medical condition into their everyday lives. i think that stigmas still exist for those with bleeding disorders; however, i think that this comes from a lack of information and understanding on the part of others. That being said, we have come a long way in the bleeding disorder community in the past 30 years.

what kind of resources does the HTC provide for patients, outside of medical care?We are fortunate to have a limited amount of financial resources available to assist families with utility bills, transportation expenses and relevant household items. We also serve as a liaison for various summer camps. We also have had or participated in various educational programs and outings over the years. We are currently involved in a transition retreat for adolescents that will occur next month in Baltimore.

How has the relationship with the Eastern PA Chapter of NHF helped you to better serve your patients?We have a very good relationship with the local chapter. They have a lot of resources available for our families, which has been extremely helpful. one big resource is the MedicAlert bracelets. We feel as though all of our severe bleeding disorder patients should have a bracelet or a dog tag. The chapter generously pays for All patients with serious bleeding disorders to have one, regardless of income. There are families that would not be able to afford a bracelet on their own, so the chapter is very helpful in this matter. Comfy caps are another great item that the chapter provides and again, there are families that would not obtain a cap on their own, so this is incredibly helpful. The chapter also provides funding resources on an as needed basis. We also enjoy the Annual Family dinner. it is a nice opportunity for HTC staff to see families outside of CHoP.

what is your favorite part of your job?i like knowing that i make a difference and hopefully improve the quality of life for the patient and family that i am working with, whether it be through education, normalizing the diagnosis, or assisting financially. i also thoroughly enjoy working as part of a multi-disciplinary team. i am fortunate to work with a highly talented and compassionate group of individuals on a daily basis.

what do you like to do in your spare time?i enjoy living in the city. i like to try various restaurants and i enjoy cooking and trying new recipes at home. i also love to travel, particularly internationally. My next trip is to Myanmar in the Fall.

is there anything else you would like to add?i always want patients to feel comfortable voicing questions, concerns and uncertainties. As the medical team we are here to assist with the various challenges that arise. Coping with a chronic condition can be a challenge, but we are here to be helpful and supportive. Please do not hesitate to contact us.

KOVUS-60135F_M2_UB_BAS_Ad.indd3-17-2016 3:45 PM Suke Yawata / Arthur George

Client CodeClient

LiveOverall TrimBleed

# of Colors

PP-775-US-0156Bayer/KOVALTRY

8” x 10.5”8.5” x 11”None

4C

Colors Cyan, Magenta, Yellow, Black

FontsArial MT Std (Bold, Regular, Light), Myriad Pro (Black SemiExtended)

Job info Fonts & ColorsImages

Saved at

None

from hssyawata5561 by

Printed At

60135_Family_UB_BAS_HR.tif (CMYK; 1578 ppi; 19%), Bayer_Ac-cessSolutions_Primary_Logo_4C.ai (82.27%), Bayer_Icon_4C.ai (68.99%), 60135_KOV_Phone_Icon.ai (50.52%)

Notes Bayer Access Solutions Ad (patient)

CALL

1-800-288-83748:00 am-8:00 pm (ET) Monday-Friday. Spanish-speaking Case Specialists are also available.

Don’t let insurance or financial challenges get between you and your treatment

* The Free Trial Program is available to newly diagnosed patients and patients who are currently using other therapy. Participation in the Free Trial Program is limited to 1 time only. This program is complimentary and is not an obligation to purchase or use a Bayer product in the future. Reselling or billing any third party for the free product is prohibited by law.

† The Free Trial Program includes up to 6 free doses to a maximum of 5,000 IU for new patients and 40,000 IU for previously treated patients.‡ The program does not guarantee that patients will be successful in obtaining reimbursement. Support medication provided through Bayer’s assistance programs is complimentary and is not contingent on future product purchases. Reselling or billing any third party for free product provided by Bayer’s patient assistance programs is prohibited by law. Bayer reserves the right to determine eligibility, monitor participation, determine equitable distribution of product, and modify or discontinue the program at any time.

§ People with private, commercial health insurance may receive co-pay or co-insurance assistance based on eligibility requirements. The program is on a first-come, first-served basis. Financial support is available for up to 12 months. Eligible patients can re-enroll for additional 12-month courses. The program is not for patients receiving prescription reimbursement under any federal-, state-, or government-funded insurance programs, or where prohibited by law. All people who meet these criteria are encouraged to apply. Bayer reserves the right to discontinue the program at any time.

Bayer and the Bayer Cross are registered trademarks of Bayer.© 2016 Bayer. All rights reserved.Printed in USA 03/16 PP-775-US-0156

Free Trial Program* • Enroll today for up to 6 free doses†

• Delivered to your home free of charge

Access to Therapy

We might be able to provide treatment at no cost if you‡: • Experience challenges getting insurance coverage for a Bayer product • Are uninsured or underinsured • Are between jobs and are experiencing a gap in insurance coverage

$0 Co-pay Program§

If you have private insurance, you may be eligible for the $0 Co-pay Program. • You may be able to receive up to $12,000 in assistance per year, regardless of income • Assistance is awarded per patient. Multiple members of the same household can apply • Enrollment can be completed in one short phone call

Live Helpline Support • Consult with an expert in insurance • Spanish-speaking Case Specialists are also available

S:8”S:10.5”

T:8.5”T:11”

The Winning Spirit

Fall 201617

ePC County Captains – 41 CouNtieS. 1 CHapter.We want everyone in ePC’s 41 counties to feel engaged and welcome to suggest new programming ideas to the Chapter. We’ve appointed more County Captains to champion our goal to grow a larger and more connected Hemophilia and von Willebrand community. Captains are available to you as a resource to meet other families and to develop new events in your area. We encourage you to reach out to your County Captain today!

Vickie DiCamillo vmdicamillo09@gmail.com 215-341-1676 Counties: Montgomery, Bucks and Philadelphia

Lillian Diaz Bilingual (Spanish) Liaison 267-262-7221

Tina Marzigliano tmarzigliano@yahoo.com 610-868-8196 Counties: Lehigh, Northampton

Lorie Kerstetterblcekerstetter@gmail.com717-271-6694Counties: Lancaster, Berks

Jolene Scicchitanoscicchitano5@verizon.net570-933-0377Counties: union, Snyder, Northumberland, Schuylkill, Montour, Columbia

Amanda Heiseyaeheisey@aol.com717-341-1488 Counties: Dauphin, york, Adams, Franklin, Cumberland, Perry, Juniata

Melissa Caulder streetcaulder@comcast.net 484-508-8116 Counties: Chester, Delaware

Frank Lentinilentini411@yahoo.com717-838-2541County: Lebanon

Holly Colemanhmiller1@hotmail.com814-441-3810Counties: Potter, Clinton, Centre, Huntingdon, Fulton, Tioga, Lycoming, Mifflin

Linda Parrylhparry1@gmail.com570-840-2395Counties: Susquehanna, wayne, Pike, Lackawanna, Monroe, wyoming, Luzerne, Carbon, Sullivan, Bradford

Eastern Pennsylvania Chapter of the National Hemophilia Foundation

Victoria Business Center, 1489 Baltimore Pike, Suite 227, Springfield, PA 19064 • 484-445-4282 • www.hemophiliasupport.org18

Aptevo BioTherapeutics LLC, Berwyn, PA 19312.

IXINITY [coagulation factor IX (recombinant)] and any and all Aptevo BioTherapeutics LLC brand, product, service and feature names, logos, and slogans are trademarks or registered trademarks of Aptevo BioTherapeutics LLC in the United States and/or other countries.

©2016 Aptevo BioTherapeutics LLC. All rights reserved. CM-FIX-0060

Aptevo Therapeutics—a company that’s anything but ordinary

At Aptevo, we pride ourselves on:

Providing high-quality, specialized therapies for people with rare conditions

Connecting with people to learn about their needs

Developing empowering programs that enrich peoples’ lives

For more information about IXINITY, visit IXINITY.com

is now brought to you by

Support Medication Access Pennsylvania.

http://medaccesspa.org

IndicationsELOCTATE [Antihemophilic Factor (Recombinant), Fc Fusion Protein] is a recombinant DNA derived, antihemophilic factor indicated in adults and children with Hemophilia A (congenital Factor VIII deficiency) for: on-demand treatment and control of bleeding episodes, perioperative management of bleeding, and routine prophylaxis to reduce the frequency of bleeding episodes. ELOCTATE is not indicated for the treatment of von Willebrand disease.

Important Safety InformationDo not use ELOCTATE if you have had an allergic reaction to it in the past.

Tell your healthcare provider if you have or have had any medical problems, take any medicines, including prescription and non-prescription medicines, supplements, or herbal medicines, have any allergies, are breastfeeding, are pregnant or planning to become pregnant, or have been told you have inhibitors (antibodies) to Factor VIII.

Allergic reactions may occur with ELOCTATE. Call your healthcare provider or get emergency treatment right away if you have any of the following symptoms: difficulty breathing, chest tightness, swelling of the face, rash, or hives.

Your body can also make antibodies called, “inhibitors,” against ELOCTATE, which may stop ELOCTATE from working properly.

The most frequently occurring side effects of ELOCTATE are headache, rash, joint pain, muscle pain and general discomfort. These are not all the possible side effects of ELOCTATE. Talk to your healthcare provider right away about any side effect that bothers you or that does not go away, and if bleeding is not controlled after using ELOCTATE.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/med-watch, or call 1-800-FDA-1088.

Please see Brief Summary of full Prescribing Information on the next page.

This information is not intended to replace discussions with your healthcare provider.

© 2016 Biogen. Printed in USA. 03/16 ELO-US-0889

it’s TIME for what

MATTERS to you

The first Factor VIII with a prolonged half-life

— Kenny, a MyELOCTATE Peer™ Learn more at eloctate.com

FDA-Approved Patient LabelingPatient InformationELOCTATE®/el’ ok’ tate /[Antihemophilic Factor (Recombinant), Fc Fusion Protein]

Please read this Patient Information carefully before using ELOCTATE and each time you get a refill, as there may be new information. This Patient Information does not take the place of talking with your healthcare provider about your medical condition or your treatment.

What is ELOCTATE?ELOCTATE is an injectable medicine that is used to help control and prevent bleeding in people with Hemophilia A (congenital Factor VIII deficiency). Your healthcare provider may give you ELOCTATE when you have surgery.

Who should not use ELOCTATE?You should not use ELOCTATE if you had an allergic reaction to it in the past.

What should I tell my healthcare provider before using ELOCTATE?Talk to your healthcare provider about:• Any medical problems that you have or had.• All prescription and non-prescription medicines that you

take, including over-the-counter medicines, supplements or herbal medicines.

• Pregnancy or if you are planning to become pregnant. It is not known if ELOCTATE may harm your unborn baby.

• Breastfeeding. It is not known if ELOCTATE passes into the milk and if it can harm your baby.

How should I use ELOCTATE?You get ELOCTATE as an infusion into your vein. Your healthcare provider will instruct you on how to do infusions on your own, and may watch you give yourself the first dose of ELOCTATE.

Contact your healthcare provider right away if bleeding is not controlled after using ELOCTATE.

What are the possible side effects of ELOCTATE?You can have an allergic reaction to ELOCTATE. Call your healthcare provider or emergency department right away if you have any of the following symptoms: difficulty breathing, chest tightness, swelling of the face, rash or hives.

Your body can also make antibodies called, “inhibitors,” against ELOCTATE. This can stop ELOCTATE from working properly. Your healthcare provider may give you blood tests to check for inhibitors.

Common side effects of ELOCTATE are headache, rash, joint pain, muscle pain and general discomfort.

These are not the only possible side effects of ELOCTATE. Tell your healthcare provider about any side effect that bothers you or does not go away.

How should I store ELOCTATE?• Keep ELOCTATE in its original package.• Protect it from light.• Do not freeze. • Store refrigerated (2°C to 8°C or 36°F to 46°F) or at

room temperature [not to exceed 30°C (86°F)], for up to six months.

• When storing at room temperature: − Note on the carton the date on which the product

is removed from refrigeration. − Use the product before the end of this 6 month

period or discard it. − Do not return the product to the refrigerator.

Do not use ELOCTATE after the expiration date printed on the vial or, if you removed it from the refrigerator, after the date that was noted on the carton, whichever is earlier.

After reconstitution (mixing with the diluent):• Do not use ELOCTATE if the reconstituted solution is not

clear to slightly opalescent and colorless.• Use reconstituted product as soon as possible.• You may store reconstituted solution at room temperature,

not to exceed 30°C (86°F), for up to three hours. Protect the reconstituted product from direct sunlight. Discard any product not used within three hours.

What else should I know about ELOCTATE?Medicines are sometimes prescribed for purposes other than those listed here. Do not use ELOCTATE for a condition for which it was not prescribed. Do not share ELOCTATE with other people, even if they have the same symptoms that you have.

44279-02

Manufactured by: Biogen Inc. Cambridge, MA 02142 USA U.S. License # 1697 ©2014-2016 Biogen. All rights reserved.

ELOCTATE® is a registered trademark of Biogen.

The Winning Spirit

Fall 201623

Save the Date v December 3rd v Holiday Party v Philadelphia

NoNProFiT orG.u.S. PoSTAGe

PAIDMediA, PAPerMiT #72

Victoria Business Center1489 Baltimore Pike, Suite 227Springfield, PA 19064