winter, a lingering season, is time to gather golden

Volume 27 • Issue 4 Winter 2013

Winter, a lingering season,is time to gather golden moments,

embark upon a sentimental journey, and enjoy every idle hour.

- John Boswell

By Sue GrantFrom the Executive Director . . .

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I am so very glad to be a part of Hemophilia of Iowa, Inc. Why, you ask? What makes HOI so very special? I can answer that very quickly: the people. Yup. YOU. All of you, the young and old and everyone in between. Industry and our great HTC, too.

It is important to think about Hemophilia of Iowa, Inc. as one big family. That is what we are. I believe, from my short time here, that if anyone needed anything there would be help there fast and it would not stop—it would be ongoing. Each of you are so special when it comes to helping, listening and knowing just what to do or say when things get tough. So, too, we do enjoy celebrating together and we appreciate the good times, too. Please smile when you think of all of the great life-long friends you have made by being connected to HOI.

The entire Hemophilia of Iowa, Inc. Board of Directors and staff wish you a special holiday time this year. Thank you for all you have done for HOI and let’s have another great year in 2014. A special thanks to our Industry partners: Accredo, ARJ Infusion Services, Axelacare, Baxter, Bayer, Biogen Idec, Biomed, Bio RX, CSL Behring, CVS Caremark, Grifols, Kedrion, Mid-West Cornerstone, Novo Nordisk, Octapharma, Pfizer & Walgreens.

Merry Christmas and Happy New Year!

Gold level SponSorS ARJ Infusion Services Baxter BioScience Bayer Healthcare Biogen Idec CSL Behring Grifols Mid-West Cornerstone Novo Nordisk

PfizerBronZe SponSor

CvS Caremark

First Step is only possible due to our generous sponsors. A Special Thank You to the following companies for your

generous sponsorship for our 2013 program.

What a great day we had at Bloomsbury Farm on October 13th, as Hemophilia of Iowa’s First Step group celebrated our Fall Family Day event in Atkins, IA. We had seven families in attendance. We had a wonderful lunch followed by our guest speakers, which were our gold level sponsors in attendance sharing exciting information about their companies. Our keynote speaker was Shelley Gerson, a former school guidance counselor who has hemophilia.

Her program “Preparing for School & Knowing your Rights” gave us tips on what information we need to share with our daycare centers or schools and how to navigate through the school system. She also discussed the importance of working with school staff when our children have special needs. Parents were able to ask questions and hear stories of success within various school districts. It was a great learning opportunity for all.

The rest of the day was filled with all kinds of fun activities for the whole family including a tire swing, corn maze, pedal tractors, hay ride, jumpy pillow, pumpkin cannons, pig races, feed the goat, haunted houses, zip-lining and many more. It was enough to fill the whole day! It is safe to say that a good time was had by all. We apologize in advance that pictures are only of the parent coordinators children. We had technical difficulties with the HOI new camera and lost all photos taken. Thank you to our families and gold level sponsors in attendance. A special thank you to Biogen Idec for sponsoring our key-note speaker.

First Step?Are you receiving The HOI Bloodline for the first time?

New to HOI? If so, you might be asking just what is First Step? Let me share. It is a National Hemophilia Foundation program designed to provide education and support to families with young children who have a bleeding disorder. The program is designed to provide a venue for parents to come together to have support, learn and have camaraderie with other parents who understand what you are going through. Parent Coordinators, developing the program in Iowa, attended leadership and training classes at a national level for our First Step program.

If you want to learn more about First Step, please feel free to contact your First Step Parent Coordinators: Kari Atkinson, 319-721-3964 [email protected] or Mary Clark, 641-895-2214 [email protected]. You may also contact Mike, Karla or Michelle at the treatment center and they can share with you the positives about our First Step program. HOI offers programs, such as the First Step, to help our Iowa bleeding disorder community in positive, fun and eduational ways.

© 2013 Accredo Health Group, Inc. An Express Scripts Company. All Rights Reserved.

Maira Guild | 1 603 657-6746

NATIONAL REACH. LOCAL PRESENCE.

With a nationwide network of pharmacies, Accredo is one of the largest suppliers of clotting

factor in the industry. What’s more, we have been a part of your local community since 1990, with

experienced community advocates who can offer assistance with all aspects of therapy. We deliver

what you need, when you need it, wherever you are.

A personal touch from people who know bleeding disorders.

...for the human factor ®

Gettin’ in the GameParticipants say event was “Amazing!”

By Ty, Asa, Andrew and SueThe CSL Behring Junior Golf & Baseball National

Championship was held in Phoenix, AZ on September 20-22, 2013. Hemophilia of Iowa, Inc. held an essay contest in July and three essay winners were selected to participate, all expenses paid, to the Gettin in the Game program. This is the first time HOI has sent members to this program.

Iowa was represented by Andrew, Ty and Asa. Ty and Asa focused on the baseball clinic and Championship, while Andrew played golf.

When reading Ty’s report, he mentioned numerous times that he had a lot of fun and met new friends. He worked very hard and did very well at the pitching station and fielding the ball. Hitting was challenging but overall thought it was a great event.

Asa’s experience was much the same but he really liked playing ball at the Talking Stick Stadium, where the Arizona Diamondback and the Colorado Rockies have their spring training. Asa got the highest score in the pitching contest and was 100% when fielding balls. Flying to Phoenix was “awesome,” too. It was his first time on a plane.

Andrew had a completely different experience because he was there to work on his golf game. He really liked that he had his own personal golf caddy who helped him line up his strokes and helped him on the green. “I can’t wait until next summer when I can play golf again!”

All three were so happy to be selected to represent Iowa. They made lots of new friends and learned a lot about their sport.

Ty, Asa and Andrew with their medals.

Kari Atkinson –

Winner!

Kari Atkinson, HOI Board President, has been selected as a Volunteer 9 Who Care Jefferson Awards Winner. KCRG-TV9 and their Show You Care Sponsors will honor nine finalists at the banquet in February and will present each with a $500 charity award. Of the nine winners, one will travel to Washington, D.C. to represent Eastern Iowa in a national competition for a Jacqueline Kennedy Onassis Award. Congratulations, Kari! HOI appreciates all of your volunteer efforts.

KCRG 9-Who Care

Winners Announced

Dear HOI, I want to thank you for the

Scholarship that I received this year. This has been the first year that I have attended the annual meeting in Cedar Rapids. The free education and accommodation, the program has helped me learn more about von Willebrands. The money will be put towards paying for books and part of my tuition at Southeast Community College in Milford, Nebraska. This will be my last year in College and will be working at my local Chevrolet dealership in Sioux City Iowa. Thanks again, Ryan Baker

Thank You

HTC NEWS

by Karla Watkinson, RNHemophilia treatment centers (HTC) have asked for

patients/parents to keep “infusion logs”, a treatment diary, or “treatment records” for years. Initially, it was used to keep track of bleeding episodes, where the bleed was, as well as the brand and lot number of the factor infused. This information was then used to help the doctor and hemophilia team at the HTC make treatment recommendations. The “logs” or “records” were also used to identify those who may have received factor that was being recalled due to viral contamination.

The importance of keeping records continues to be important for the following reasons:

• They help your health care providers identify target joints or any other bleeding problems such as nose - bleeds, mouth bleeds, or heavy periods• Help your health care providers to identify problems and make appropriate referrals to other specialists such as Orthopedics, Physical Therapy, Otolaryn gology (ENT), or OB-GYN• Help your health care providers make recommendations to prevent complications such as arthritis, muscle weakness, blood loss anemia and help control pain and bleeding• They help your health care providers determine recommendations for treatment options, prescribing the right dose, and frequency of treatment• Keep track of lot numbers used in the event of contaminations • Documentation to help support need for treatment • Documentation to support the need for Medicaid or disability• Documentation to support treatments and infusions for insurance companies or they may refuse to pay for factor (see below)

We have been told by some home care companies, specialty pharmacies, and billing offices that private insurance companies, Medicaid, and Medicare are reviewing pharmacy claims and product usage each quarter in addition to requesting documentation of infusions, number of bleeding episodes, or prevention of bleeding episodes to justify reimbursement or payment of factor. With the high costs of healthcare, we anticipate an increased request for this documentation to support, or justify, your usage and will be required for your bills to be paid.

Some types of infusion logs or treatment records that patients use are:

• A calendar dedicated to infusions or treatment such as Factor replacement, Stimate, Amicar or Tranexamic Acid • A program on your computer such as an Excel spreadsheet• A notebook• A treatment log from your specialty company or homecare company• A device from your pharmaceutical company• Using your calendar on your cell phone• Emailing the treatment center with each bleed so we can document it in the electronic medical record• My Chart messages (UIHC electronic medical record)Keeping infusion logs or treatment records benefits

you and your health care provider so you will continue to receive the best care possible and it can become part of your medical record. We also strongly encourage you to keep these records so you will continue to have your treatment product paid for by your insurance company.

The Importance Of Keeping Records Of Infusions

HemophiliaBleeding Disorder

Summer Camp Date Set: June 22-27, 2014

More info to follow in 2014

On Monday, November 25, 2014, Senator Grassley was in Cedar Rapids, IA., visiting with constituents during his annual 99 county town hall meetings. We had the honor of meeting up with Senator Grassley on two different occasions in the same day. In the morning, Sue Grant, HOI Executive Director, shook hands with and talked to Senator Grassley at the Cedar Rapids Bank & Trust building. Later that same day, Kari Atkinson, HOI Board President was in the audience when the Senator spoke with Transamerica employees her place of employment. Sue was able to briefly talk to Senator Grassley and took the opportunity to make him aware of HR460 and asked for his support when this HR bill gained support in the senate. Kari was able to share her personal story of her son’s high cost of medication and explained about the average drug costs for those that have a severe bleeding disorder. Senator Grassley took the opportunity during the Transamerica townhall meeting to education the whole room on some programs that have been put into existence through Medicaid due to high out of pocket costs. However, he very much indicated that he wants to help and would be willing to engage in additional conversations to help our community move HR460 forward in the senate. Kari is working with the national hemophilia organizations to follow up with the staff at Senator Grassley’s office Just a little about HR460…the bill would support lowering the fees of high-cost co-payments for specialty medications which are needed by the bleeding community. Clotting factor therapies that are hitting some Tier IV or tier V drug pricing are requiring exorbitant patient co-pays, including some patients paying up to 25 - 33% of the cost rather than fixed co-pays. Our thanks to International Traders of Iowa who hosted the Senator at The Cedar Rapids Bank & Trust, and Transamerica for hosting Senator Grassley and making his visit meaningful for all those that attended. Hemophilia of Iowa, Inc., will be having its first-ever Advocacy Day on March 2-3, 2014 in Des Moines, IA. (See article for additional information).

Senator Chuck Grassley meets HOI Board President and Executive Director

Kari Atkinson, Board President, visited with Senator Chuck Grassley.

Sue Grant, HOI Executive Director, with Senator Chuck Grassley and the Bloodline.

• Local Pharmacies• Nationwide Services

• Hemophilia-Trained Nurses and Staff• Patient Support 24/7

Hemophilia Care at Home

WalgreensHomeCare.com/bleedingdisorders

For comprehensive services Call: 866-436-4376 or Fax: 888-688-3593En Español: 800-456-1923

SAVETHE

DATES JAN. 1 - FEB. 7

Membership Drive!FEBRUARY 15-16

7th Annual First Step Family Fun

Education WeekendMARCH 2 & 3

Hemophilia of Iowa, Inc.Advocacy Day

Des MoinesMARCH 27-29

HFA SymposiumTampa, Florida

JUNE 22-27Hemophilia & Bleeding

Disorder Summer Camp(Ages 6-17)

More details to come!JUNE 30

26th Annual Dude Cremer Memorial Golf

TournamentFox Ridge Golf Course

Dike, IAAUGUST 16-17

HoI Annual Education Weekend

Des MoinesoCToBER 4HoI presents

Another BLooDY WALK(our Walk-A-Thon) TBD

The Children’s Hospital of Philadelphia (CHOP), an institution on the forefront of gene therapy research for more than 20 years, has invested $50 million in Spark Therapeutics, a biotech start-up company based in Philadelphia. The company will take control of two clinical gene therapy trials that originated at CHOP: a phase III study for inherited blindness caused by mutations of the RPE65 gene and a phase I/II study for hemophilia B. The move marks a significant step in advancing the use of gene therapy to treat diseases by correcting or replacing dysfunctional genes.

“Gene-based medicines are among the most complex therapeutics ever developed,” said Katherine High, MD. “We at CCMT have persevered through more than a decade of scientific and clinical development and are now closer than ever to realizing the ambitious vision of one-time, potentially curative therapies to address serious genetic conditions. The team at Spark has incredible goals for the treatment of diseases, including hemophilia B and inherited blindness, and we look forward to working with them to deliver groundbreaking new treatments to patients in need.”

This partnership follows on the heels of a major breakthrough in gene therapy for hemophilia. In 2011, six hemophilia B patients at the University College London (UCL) Cancer Institute in London were successfully treated with gene therapy. The therapy incorporated the use of adeno-associated viruses (AAVs) as delivery vehicles, or vectors, to carry the genetic codes that trigger the production of the factor IX (FIX) protein, which is deficient in people with hemophilia B. Ideally, AAVs deliver the genetic material into living cells to sustain therapeutic effect without causing disease or triggering significant immune responses. The trial was expanded to eight patients, all of whom generated increased levels of FIX.

Source: National Hemophilia Foundation

CHOP Invests in Spark and Gene Therapy’s Future

PRESIDENTKari Atkinson

vICE PRESIDENTRachelle Nolan

TREASURERRita Coxe

SECRETARYJulie Castenson

BoARD MEMBERS AT LARGEDavid Brustkern, Josh Hemann,Valerie Foust, Paula Thompson

ADvISoRY MEMBERSMike Lammer, Kris Kreutzer

Brenda AdamsonSTAFF

Sue Grant, Executive DirectorHEMo

PHILI

A oF I

oWA B

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MEMB

ERS

Spring Session: April 11 - 14, 2014Registration opens in 1 week!

This Spring's Inhibitor Family Camp program will be held at The Painted Turtle in Lake Hughes, California.

Scheduled: Friday, April 11th thru Monday, the 14th, 2014Registration: OPENS FRIDAY, NOV. 22nd, 2013 (9a, EST) Space is limited, and attendance is on a first-come, first-served basis for those who qualify. To register, applicants must have an active inhibitor, or have had an active inhibitor within the past 12 months and fall between the ages of 6-18. This program invites the entire (immediate) family of the child with inhibitors and covers all expenses!

Advocacy (Legislative) DayAnnouncementMarch 2-3, 2014

Hemophilia of Iowa, Inc. has scheduled its first-ever Legislative Day for Sunday and Monday, March 2-3, 2014, in Des Moines, IA. Members of the Board of Directors, staff and volunteers will meet in Des Moines for training and planning on Sunday evening and Monday morning. We will then proceed to the hill at 11 a.m. to meet with State Legislators. Discussions will include (but not limited to) the high-cost of therapy treatments (Tier IV drugs) and other healthcare issues. This is one of the best ways to get our stories out there so that our State Leaders can better serve our bleeding disorder community needs.

If you are available to meet and talk with our legislators about how they can better support Hemophilia of Iowa, Inc., please contact Sue Grant, Executive Director at 319-393-4007. Space is limited. Deadline for attending the Legislative Day events will be Tuesday, February 7, 2014.

Are you prepared to TRAVEL?

Planning a trip can be fun. Finding the answers to these

questions can be exciting: Where shall we go, how long can we stay, and what can we do?

No matter where you plan to go, there are some smart travel tips that you should k now.

1) A TRAVEL LETTER – Don’t leave home without it! It is an official document from your physician (HTC) that describes your bleeding disorder and medical needs, in case of an emergency. (Let your HTC know you are traveling).

2) Transporting medications…safely. Did you know that your medical supplies, medications and devices are EXEMPT from airline baggage restrictions? (You may prefer to pack them separately to simplify the inspection process. NOTE: Be mindful of any products that should NOT be exposed to X-rays and do not pack them in your luggage.

3) Physical inspection vs. X-Ray machine: Factor product supplies should never be packed in checked luggage: Your factor & luggage could be lost, airplane baggage area temperature may harm meds and rough handling might result in broken containers.

Kathy-Please use this article….the one you sent was from the last bloodline.

Anticipate Airport Challenges: It is essential to be prepared when traveling through the airport. Leave extra time for any security questions, bring enough factor to infuse in the event of a bleed, and have a travel letter from your hemophilia treatment center (HTC). Keep your factor and other treatment components in their packaging, as stand-alone bottles may raise concern with airport security. If you have any questions about TSA regulations, ask your HTC before leaving for the airport.

Identify Local HTCs: If you are traveling with a child with hemophilia, it is important to know the nearest HTC to your destination. If you are traveling by car, research HTCs along your route. Also have phone numbers of local factor suppliers in case of an emergency.

Be Open With Family and Friends: When educating your family and friends about hemophilia, be as open as possible about the disorder and the effect it has on your day-to-day lives. Parents also have said letting other family members watch your child infuse can be an empowering experience, as they will likely be impressed that a process they may have perceived as daunting is actually just part of his everyday routine.

Stick to Your Routine: The holidays should be a time to relax and celebrate, but traveling can interfere with your family’s normal treatment

routines. Continue to stick to your child’s prescribed treatment.

Source: Novo Nordisk HERO program

©2007 CSL Behring LLC 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901, USA www.CSLBehring-US.com IO#102-13964Q 6/2007

Take Life OnTM

He can be just one of the guys

For the past three years, the American Red Cross and Hy Vee Grocery Stores have selected two winners of the Heroes In the Heartland Award and made a special presentation at the Iowa vs. Nebraska Football game. This year’s game was on Friday, November 29th, right after Thanksgiving.

The award is given to one-citizen Hero from Iowa and one-citizen hero from Nebraska each year, for going above and beyond to help others in need. This year’s winner was Mike Klemmensen, a firefighter from Hinton, IA.

Kari Atkinson, Board President from Hemophilia of Iowa, Inc. was nominated for this award and was given serious consideration.

We extend our congratulations to our 2013 nominee:

Kari Atkinson

Heroes in the Heartland Award

Mike Lammer, LSWRetirement Announcement

Mike will be retiring in February, 2014 after

25+ years of service at the Hemophilia Treatment Center

in Iowa City.

Cards and well wishes may be sent to:

UIHCMike Lammer, LSW

2568 JCP200 Hawkins Dr.

Iowa City, IA 52242

Congratulations Mike

COllEGE InTERnSHIp AVAIlAblE

Bayer Hemophilia Leadership Development Program (BHLDP) is accepting intern applications through February 28, 2014 for full time college students touched by hemophilia. Those who have a strong commitment to becoming future leaders in the hemophilia community should apply. Interns will travel to Bayer’s U.S. headquarters in New Jersey where they will spend 6 weeks participating in activities that aim to help them grow personally and professionally. (June 2 - July 11, 2014).

Go to: www.livingbeyondhemophilia.com/intern for more information.

For more information: Grifols Inc. Customer Service: 888 325 8579 Fax: 323 441 7968

www.grifolsusa.com

With Alphanate® you have a choice!

5 mL

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1500 IU FVIII Range

1000 IU FVIII Range

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500 IU FVIII Range

250 IU FVIII Range

1000 IU FVIII Range

1500 IU FVIII Range

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.

Mix2Vial® is a registered trademark of Medimop Medical Projects, Ltd., a subsidiary of West Pharmaceutical Services, Inc. © 2012 Grifols Biologicals Inc. All rights reserved. Printed in USA. January 2012 A803-0112

Available in the following potencies and packaged with Mix2Vial® Filter Transfer Set:

VWF:RCo and FVIII potency on vial labels and folding cartons

Hemophilia of Iowa Legacy Society EstablishedBy Sue Grant

Hemophilia of Iowa, Inc. has begun a Legacy Society for individuals leaving a bequest (wills) to HOI. These very special gifts will touch lives forever and make a difference in our future. This specific gift is one that anyone can do simply by including Hemophilia of Iowa, Inc. in your will or estate plans. We welcome David Brustkern as our first known member of the HOI Legacy Society.

If you are interested in learning more about the HOI Legacy Society, please contact Sue Grant, Executive Director, (319)393-4007 or email at: [email protected] to schedule a confidential meeting.

expertise in: • Hemophilia A • Hemophilia B • Von Willebrand’s Disease • Other Bleeding Disorders

866-661-0110 www.biomed-rx.com

services include:• Nursing & Pharmacy 24/7• Infusion Education• Reimbursement Specialists• Direct Communication With the People You Know

Ed ChomyakJohn KowalskiChris Quesenberry

P H A R M A C E U T I C A L S

By Rachelle NolanOn Saturday Nov. 9, Hemophilia of Iowa hosted its 4th Annual Wine

Tasting Event. This event was started to raise funds that are specifically used for the scholarship program. HOI annually awards scholarships for secondary education to individuals who have a bleeding disorder or are a sibling or parent of someone affected. These individuals do have to apply and must meet minimum requirements to be considered by the Scholarship Committee.

This year the event was located in Cedar Rapids at the home of our new office in the Red Cross Building located at 6300 Rockwell Drive NE. The evening was wonderfully attended by 62 individuals. Attendees enjoyed delicious food and an amazing variety of wines to sample. Three area wineries served samples and educated participants about their wines. The wineries present were Cedar Ridge (Swisher, IA), Stone Cliff (Dubuque, IA) and Ardon Creek (Letts, IA). In addition to wine sampling, scrumptious food and sparkling conversation participants were able to purchase unique and beautiful glass creations from The Flattened Bottle Store and D&J Creations (Central City, IA).

A silent auction, wine wall and wine raffle were fun fundraising activities that helped make the night a huge success. Thank you to all of our donors and attendees for supporting the Hemophilia of Iowa mission and scholarship program. We look forward to seeing you next year at this amazing event!

4th Annual Wine Tasting

Sue Grant, Executive Director of HOI and State Representative Art Staed, enjoy conversation at the 2013 Wine Tasting Event in Cedar Rapids.

4th ANNUALWine Tasting

PhD Pfizer MASTER baxter Fund Fusion Grant

bACHElOR bayer Healthcare

ASSOCIATEAccredo ARJ Infusion Servicesbiogen Idec CSl behringCVS Caremark Octapharma

A special “Thank You”to our wine and gift companies displaying for your pleasure.

WINERIES & GIFT COMPANIES

Stone Cliff Vineyard & WineryDUbUqUe, IA

Cedar Ridge WinerySWISHeR, IA

Ardon Creek Vineyard & WineryLeTTS, IA

D & J CreationsCenTRAL CITy, IA

The Flattened bottleCeDAR RAPIDS, IA

Our thanks to the companies and individuals who generously

donated Silent Auction Items.

ALL PROCeeDS WILL be USeD In SUPPORT OF OUR HOI SCHOLARSHIP PROGRAM.

OUR SPOnSORS:

Manufactured by Wyeth Pharmaceuticals Inc. Marketed by Pfizer Inc.

HEM586903-03 © 2013 Pfizer Inc. All rights reserved. July 2013

Log your infusions, track bleeds, and more.

We’ve heard from the community and developed this personal logging app, no matter what factor or hemophilia type you have.

With HemMobileTM you can...Log it. Track it. Own it.

• Record the date, time, location, and reason for every infusion

• Share reports and information with your care team

• Create a password to protect your data. Pfizer will not collect any of your personal information unless you choose to enroll at HemophiliaVillage.com. You can decide what to share and with whom

… and more

App with Apptitude:HemMobileTM

App Store is a service mark of Apple Inc. Android and Google Play are trademarks of Google Inc.

By Sue GrantTransamerica Life Insurance Company of

Cedar Rapids Iowa allowed Hemophilia of Iowa to fundraise the entire month of November directly to their employee’s. Thank you to Kari Atkinson, Transamerica Employee and HOI president for organizing the fundraiser. This is the 10th year that Transamerica employees have been able to support HOI is such a powerful way.

This year money was raised through a Cold Hard Cash Raffle, holiday greenery sale and one of the buildings hosted their own chili cook off. This fundraiser raised $1,147 and all money will be used to send kids to Hemophilia Summer Camp. We offer a special thank you to the Transamerica Employees for their support and for those that volunteered to help Kari pull off this wonderful fundraiser.

Employees of Transamerica Life Insurance Company also received facts on bleeding disorders.

Special 10th Year Fund Raising Event Supports HOI CAMPWhat a positive promotion of HOI and we, again, thank the 3,000 employees who all learned more about bleeding disorders and all of those who participated in the various fund raisers.

If you have an opportunity to fundraise or educate others, at your school or business, please let Kari or Sue know. We are always looking for positive opportunities to get our message out.

If you wish to inquire on the receipt or status of your scholarship please email Sue Grant at [email protected] or call 319-393-4007. DO NOT EMAIL YOUR APPLICATION!

Postmark DeadlineAll materials must be mailed in one package that is postmarked on or before March 31, 2014. Mail to:

Hemophilia of Iowa - Scholarship Fund6300 Rockwell Drive NE, STE 104Cedar Rapids, IA 52402-7216

All selection decisions are final and are not subject to appeal. Applications and supporting documents become the sole property of Hemophilia of Iowa and cannot be returned. It is your responsibility to inform the Committee Chair of any changes to your application. This includes, but not limited to, change of school and full or part time status.

If you wish to inquire on the receipt or status of your scholarship please email Shane Kelley at [email protected] or call (319) 239-3948. DO NOT EMAIL YOUR APPLICATION!

Hemophilia of Iowa Scholarship Fund Application Instructions

CalendarMarch 31, 2014 – Postmark Deadline for complete applicationsMay, 2014 – Notifications Sent2014 Annual Education Weekend – Award Disbursement (Date TBD)

Eligibility Requirements• Member of Hemophilia of Iowa through December 31, 2014. Memberships are on a calendar

year schedule. Your membership must be postmarked on or before March 31, 2014. If membership is not sent with a postmark on or before March 31, 2014 your scholarship will not be considered. Do not send your HOI membership application to the scholarship committee, please mail to the address noted on the 2014 membership application. NO EXCEPTIONS.

• Must have a diagnosed bleeding disorder or be an immediate family member (Sibling, Child, or Caregiver) of someone that has a diagnosed bleeding disorder (diagnosed bleeding disorder is defined as a person who is followed with a treatment plan).

• Verification of diagnosis maybe required from your Physician upon request (We will notify you if this is required)

• High School Graduate before or in 2014• Be enrolled in a degree seeking program at an accredited College, University, or Trade School

in the U.S. during the 2014-2015 academic year for a minimum of 6 credit hours• Either yourself or a representative of your immediate family must be present at the

Scholarship Award Ceremony to be held during the HOI Annual Education Weekend.

Selection Criteria• Community Service in the bleeding disorder community• Personal Qualities• The John Heisner Scholarship and the Dude Cremer Scholarship are awarded to persons that

have supported the Mission of Hemophilia of Iowa.

Application PreparationPlease submit ONE sets of the following documents:

1. Completed Scholarship Application2. A typed summary of not less than one paragraph and no more than one page of your short range

and long range career plans. 3. A typed summary of not less than one paragraph and no more than one page of your personal

background related to the bleeding disorder community.4. A typed letter of recommendation from a HOI board member, member of Executive Committee, a

Committee Chair person, or someone from the HTC verifying contributions made to HOI and/or support of our Mission. This is optional and could possibly qualify you to be considered for a named scholarship, which is awarded on top of the scholarship award.

We strongly encourage you to type your Application and Summaries as it will make it easier for the selection committee to read. If you do not have access to a computer, you may neatly print the application in blue or black ink. Applications or Summaries that are illegible or incomplete will be disqualified. Check your Summaries for correct grammar, spelling, and punctuation.

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Aug. 16-17, 2014

INDUSTRY NEWS

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Bayer and the Bayer Cross are registered trademarks of Bayer. © 2013 Bayer HealthCare Pharmaceuticals Inc. All rights reserved. 04/13 KN10000213B

We may be able to help.Bayer offers a range of programs that can help you navigate insurance questions about your hemophilia A treatment. If you’re having

issues with co-pays or gaps in coverage, we may be able to offer assistance. Speak with one of our case specialists to find out more.

Call 1-800-288-8374 and press 1 to speak to a trained insurance specialist!

Having issues with co-pays or gaps in coverage for your hemophilia A treatment

FDA clears Johnson & Johnson Hepatitis C drug

Johnson & Johnson’s daily pill for treating Hepatitis C wins approval from FDA

WASHINGTON (AP) -- Federal regulators on Friday (11/22/13) approved a new drug from Johnson & Johnson for use in treating chronic hepatitis C infections. The U.S. Food and Drug Administration said it approved the drug, a protease inhibitor that blocks a protein needed by the virus to replicate.

The Johnson & Johnson drug, named Olysio, is designed to eliminate hepatitis C, the most common form of the liver-destroying virus. It is a daily pill taken in combination with the long-established drug cocktail used to treat the most common form of the virus.

The FDA’s decision comes less than a month after an FDA advisory panel voted unanimously in favor of approving the treatment. Olysio is the third FDA-approved protease inhibitor for treatment of hepatitis C, the FDA said.

More than 3 million people in the U.S. have hepatitis C, a blood-borne disease that is blamed for 15,000 deaths a year.

Source: Johnson and Johnson announcement 11/2013

IHTC Launches Rare Coagulation Disorders Resource Room

The National Hemophilia Foundation (NHF) is pleased to announce the launch of the online Rare Coagulation Disorders Resource Room. The new website, www.rarecoagulationdisorders.org, is a dynamic resource for individuals with rare coagulation disorders and their healthcare providers.

This website therefore provides current and searchable information on the basic science, clinical management, available laboratory and genetic testing, clinical trials and global research initiatives for these very rare, difficult-to-manage disorders. For instance, on the new site users will find information on factor XI deficiency and combined factor V/factor VIII deficiency.

The international Rare Bleeding Disorders Database (RBDD) Registry, the Indiana Hemophilia & Thrombosis Center (IHTC) and the Rare Coagulation Disorders Subcommittee of NHF, a group appointed by NHF’s Medical and Scientific Advisory Council, all collaborated to develop this new resource room.

Source: National Hemophilia Foundation

INDUSTRY NEWS

10 POINTS IF YOU KNOW WHO SAID THIS: There are known knowns; there are things we know that we know. There are known unknowns; that is to say, there are things that we now know we don’t know. But there are also unknown unknowns—there are things we do not know we don’t know.1

1. Which of the following is not a major change taking place in health insurance in 2014? A) A health insurance tax credit is established for middle-class Americans B) Insurers are prohibited from dropping or limiting coverage for people participating in clinical trials C) Patients receive a free box lunch at each doctor’s office visit D) Annual limits on insurance coverage for adults are eliminated E) No discrimination is allowed based on pre- existing conditions or gender2. Under the individual mandate, ACA requires all US citizens to have some kind of healthcare coverage beginning in 2014. True or False?

3. What kind of insurance do I need to meet the individual mandate requirement? A) Government-sponsored plan B) Employer-sponsored plan C) Health Insurance Marketplace plan D) State health benefits risk pool E) Any of the above4. What happens if I don’t sign up for insurance in 2014 and each year after? A) You will be arrested B) You will pay an annual penalty for yourself and for each of your dependents who remain uninsured C) Your driver’s license will be revoked D) You will be put on probation by the courts E) You will have to dress in bubble wrap so you don’t get hurt

There are many more questions and complete answers on ourHOI Website….www.hemophiliaofiowa.com

Please go there to learn more!

Answers: Donald Rumsfeld (30 points) 1-C, 2-T, 3-E, 4-B

Take the Healthcare Insurance Quiz!By Wendy Owens and Laurie Kelley

Winter Fun Word Search Game

DONATIONS January 1, 2013 - December 1, 2013

$20,000 +Novo Nordisk Inc.

$15,000-19,999Baxter National Hemophilia

Foundation

$8,000-14,999ARJ Infusion Services,

Inc.CSL Behring LLCPfizer Inc

$5,000-7,999Bayer HealthCareBiogen IdecCVS CaremarkMidWest Cornerstone

Healthcare

$1,000-4,999Accredo, IncAxelcareBiomed Healthcare, Inc.Biorx LLC* Brustkern, David N.Fund FusionGrifolsHemophilia AllianceIowa Health SystemKedrion BioPharmaMidland Information

ResourcesTransamerica EmployeesWalgreen/Option Care

$500-999Bosch, Sheri & ChadBicket, Judy & DanFoust, RichardKelly ShoudyMcCarthy, Claudia & John Nolan, Deborah & RickNolan, RickyOctapharma USA, Inc.Pinnacle Management

ConsultingRodenberg, Bev & Bill Shepard, Todd

$250-499Anesthesia Management

PartnersAtkinson, Kari & CraigFolkerts, RobinGrant, Sue & Hamilton,

CarolynKelley, Sherri & Shane Kellogg, Dana & ShellyMeyer, Carol & BillNolte, Jill & NickOberkrom, Vicki & DaveUnruh, BrianWatkinson, Karla & Bill

$100-249405 LoungeAdamson, BrendaAlliant EnergyAXA FoundationBerkemann, PaulBosch, RyanAnonymousCarney, Kathy & Dave Castenson, Julie & Mark Castenson, Helen & Rod Cowen, Stacie & PerryCoxe, Rita JDirkx, Becky & Richard Doree, StacyDruckenmiller, AshleyFlores, DanielleFriends of HOIGrinnell MutualHanrahan, Renee K.Haugstad, Kimberly & Howard Hutchens, JaneITA GroupJepsen, Brad Kasemodel, BrianKasemodel, Beth & Ronald Klopfenstein, KathleenKoehn, JamesLaughlin, JeffLaughlin, Jennifer & William Looney, CraigMelhado, DeborahMeyer, MichelleNichols, DeniceNichols, Madonna & Jeff Nichols, PerryNolan, Rachelle

Nolte, MaxPatrick, MarieRezac, Laurie & Michael Rodenberg, Vicki & BrianSellers, CalebStaber, Janice DrT.L & L. IncTebbe, ChadVitterel, Robert Dr.Wells, Pat & SkipWelsh, Becky & Mike Wiener, Mark

$50-99Althoff, Alice & Wayne AMR, Inc.Anderson, CharlesBellis, Jean & RobertBrecht, CaraCoady, RuthDekock, Cheryl & Dane Foust, Valerie & Curt Frazer, MaryAnn & ClarenceGetty, Mary & TimothyGilbaugh, GayleHamerlinck, Lu Ann & ThomasHeitman, Theresa & Loring Hemann, Heather & Josh Kivlahan, T. MarieKolda, Darlene & RobertLammer, MichaelLewis, TedMascari Megel, JaniceNolte, DanReeves, PatSchreen, SteveSmitley, AlSvestka, MarilynThomas, JeffTinkle, JoshTranscend Art LLCUtter, ZachVorwald, Cindy & Randy Weighten, RuthanneWhite, Laurie & Matt Wier, Peggy & Pat

$0-49Bakker, JacquelynBarber, KimBeeler, GerryBell, Susan

Bever, KerriBunch, CoryCastenson, DouglasChapman, BlakeChristianson, Jan & SteveClark, TonyCremer, MarilynDettmer, MaryFlanders, ChrisFox, Britt & Jared Gleason, TonyGrabe, DanielleGuy, ChristinaHall, MissyHeims, Sharon & Jim Heires, CynthiaHeires, VictoriaHesse, JasonIowa One GiftKeller, Michelle & Eric Keller, JaneKreutzer, KrisLindsley, Barbara & Terry Lord, DianaMcArthur, KarilynMcGrane, AmyMontgomery, ToddMorrow, Debra & Terry Nickels, Kim & ZacharyO'Toole, Linda & Mark Owens, Kathryn & Jared Rezac, MaryRuff, JodySandison, CatherineSetzer, MildredShephard, MarkSiggelkow, ArnolaStaed, Susan & Art Stewart, KentStone, Elaine & Tom Strnad, RandyTedrow, GaleThaler, ConnieTheilen, Clarence (Rex)Thompson, Paula & Zane Unruh, Mildred & Roy Wazac, Ruth & DaveWissink, Willma

* Member of the HOI Legacy Society

By Sue GrantWe have never done this event before. It is

a first. It will be something to see and certainly, there will be lots to do! Our first-ever Hemophilia of Iowa Walk-A-Thon. WOW!

I am sure you have heard of other Cancer Walks or Alzheimer’s Walks or maybe your school does a walk to raise money….now we are going to have yet, “Another Bloody Walk!” to raise money and awareness for HOI.

The details are all being worked on my our HOI Walk Committee which includes: Brenda Adamson, Kari Atkinson, Tami Bullock, Julie Castenson, Mary Clark, Stacie Cowen, Danielle Flores, Valerie Foust, Kris Kreutzer, Whitney Rairden, Paula Thompson and Sue Grant.

We need your ideas and help. Join the WALK Committee or let anyone on the committee know

your ideas, how you can help and your thoughts. We need you! HOI also needs you to plan on joining the WALK. Plan a team, or join some friends and start walking now! (indoors, please). Go slowly – this is not a race.

The great thing is that everyone can participate! Everyone. There will be ways for you to join a team – even long distance. You can walk and raise money and help a team win our TOP prize for bringing in the most money! But you must start thinking now and plan ahead! This will be a great event and lots of fun. Start organizing your team today! (More information soon).

Hemophilia of Iowa presents

“Another Bloody Walk!”October 4, 2014

Hemophilia Federation of Americacordially invites you to their

20th ANNUALSYMPOSIUM

Tampa, FloridaMarch 27 - 29

Registration is now open!

Travel Scholarships are available to 1st time attendees (first come, first served) for

families who need assistance.

Contact: Pat Brown202-675-6984

Sue Grant, Executive Director of HOI and State Representative Art Staed, enjoy conversation at the 2013 Wine Tasting Event in Cedar Rapids.

Kathy – This is new and replaces old membership application) If it takes too much time, put in old with 2014 dates and next newsletter fix)

Hemophilia of Iowa--2014 Membership Application

Name: _______________________________________________________________________________________

Address:________________________________________City:_________________________Zip______________

Home Phone #: ____________________________ Cell #: ____________________________________________

E-mail: __________________________________________Please send the Bloodline via e-mail? Yes No

Best time to contact me: AM PM Would you like to volunteer or be on a committee? Yes No

Membership January 1 – December 31, 2014 Single, Family, Industry Representative, & Friends of Hemophilia of Iowa – $25

Family includes residents in the same household with dependent children up to the age of 25. (Dependent children do not have to reside in the parent’s home if away at school or living on their own.) Relative would be a sister, brother, grandparent, aunt, uncle and/or cousin to the person who has a bleeding disorder. Friends of Hemophilia of Iowa are people who do not have a relative with a bleeding disorder but are support people and friends of those who do have a bleeding disorder.

I would like to make an additional Tax deductible donation of $____________________

Please complete the following information so Hemophilia of Iowa can be of best service to you.

1. What is your association to the bleeding disorder community? I have a bleeding disorder or my spouse has a bleeding disorder.

Type of bleeding disorder: ______________________ Which HTC are you seen at:__________________ I am a parent of a child with a bleeding disorder.

Type of bleeding disorder:______________________ Which HTC are you seen at:__________________ I am a relative of a person with a bleeding disorder. I am a friend/support person for someone who has a bleeding disorder.

2. If you are a relative or friend/support person for someone with a bleeding disorder, please list the full name of the person who has the bleeding disorder. _____________________________ State they reside______

The image cannot be displayed. Your computer may not have enough memory to open the image, or the image may have been corrupted. Restart your computer, and then open the file again. If the red x still appears, you may have to delete the image and then insert it again.

3. Complete the following information for EVERY family member that is considered part of this membership. (Bleeding Disorder Yes = someone who has a confirmed diagnosis and has a treatment plan.)

Family Member 1 Name: _______________________________________ Date of Birth: ______/______/_______ This family member has a Bleeding Disorder: Yes or No Family Member 2 Name: _______________________________________ Date of Birth: ______/______/_______ This family member has a Bleeding Disorder: Yes or No Family Member 3 Name: _______________________________________ Date of Birth: _____/_______/_______ This family member has a Bleeding Disorder: Yes or No Family Member 4 Name: _______________________________________ Date of Birth: _____/_______/_______ This family member has a Bleeding Disorder: Yes or No Family Member 5 Name: _______________________________________ Date of Birth: _____/_______/_______ This family member has a Bleeding Disorder: Yes or No Family Member 6 Name: _______________________________________ Date of Birth: _____/_______/_______ This family member has a Bleeding Disorder: Yes or No Family Member 7 Name: _______________________________________ Date of Birth: _____/________/______ This family member has a Bleeding Disorder: Yes or No

Please do not let cost of membership prevent you from joining Hemophilia of Iowa. Contact Mike Lammer at 319-356-1988 for confidential financial assistance. This membership scholarship program is available for people

directly affected by a bleeding disorder and their caregivers.

Please mail this application and $25 dues to: HOI, 6300 Rockwell Dr NE, Suite 104, Cedar Rapids, IA 52402(No changes)

INDUSTRY NEWS

FDA clears Johnson & Johnson Hepatitis C drug

Johnson & Johnson's daily pill for treating hepatitis Cwins approval from FDA

WASHINGTON (AP) -- Federal regulators on Friday (11/22/13) approved a new drug from Johnson & Johnson for use in treating chronic hepatitis C infections. The U.S. Food and Drug Administration said it approved the drug, a protease inhibitor that blocks a protein needed by the virus to replicate.

The Johnson & Johnson drug, named Olysio, is designed to eliminate hepatitis C, the most common form of the liver-destroying virus. It is a daily pill taken in combination with the long-established drug cocktail used to treat the most common form of the virus.

The FDA's decision comes less than a month after an FDA advisory panel voted unanimously in favor of approving the treatment. Olysio is the third FDA-approved protease inhibitor for treatment of hepatitis C, the FDA said.

More than 3 million people in the U.S. have hepatitis C, a blood-borne disease that is blamed for 15,000 deaths a year.

Source: Johnson and Johnson announcement 11/2013

319-393-4007Sue Grant at

Mailed by:UIHCHemophilia Treatment Center200 Hawkins Dr., 2507 JCPIowa City, IA 52242

The medical infor-mation contained in this newsletter is for information purpos-es only and is not to be taken as medical advice. If you have any questions or concerns, always, check with your healthcare provider.

And Finally…By Sue Grant

Those are strong words. They do make a statement. Are you a dues-paying member of Hemophilia of Iowa, Inc.? Does it really matter? Really?

The answer is YES! Being a member of Hemophilia of Iowa is great because it offers you so many things to do and see and places to visit—all while you are learning about bleeding disorders.

If you are a patient, caregiver, parent, family member, friend, healthcare professional or co-worker, we invite you to become a MEMBER of HOI. You will meet new people, visit with our Industry partners about the latest treatments, or see a doctor or healthcare professional at one of our many special events and more. Receive our member discount on all of the special events and programs, too. You will also receive our nationally recognized newsletter (The Bloodline) four times per year! FREE.

Beginning in 2014, HOI will be having a membership drive to gain more members and to invite past members to become active once more. We also want to ask patients at our HTC to consider becoming a member because you will get much more than our newsletter, the Bloodline. It is easy! Fill in our application form completely and mail it in with your check of $25. (Families, individuals and friends: Just $25). It is that simple!

Do it today! We have members from all over the State of Iowa and beyond. Join us and support Hemophilia of Iowa now. Thank you!

“I am a member of Hemophilia of Iowa!”

Check the website for future events and our membership form. Unfortunately, on-line membership and registration are NoT

available at this time.

www.hemophiliaofiowa.com

winter, a lingering season, is time to gather golden

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