Everyone Felt Lucky at Casino Night! - Hemophilia of …...2 HEMOPHILIA OF NORTH CAROLINA 260 Town Hall Dr., Suite A, Morrisville, NC 27560 • (800) 990-5557 • [email protected]

SPRING 2012

260 Town Hall Dr., Suite AMorrisville, NC 27560(800) [email protected]. hemophilia-nc.org

Hemophilia of North Carolina hosted our annual “Hearts for Hemophilia” Casino Night event on Saturday, January 21st at a new location this year – Bay 7 in Durham – that was a fantastic venue! This event continues to grow in attendees and proceeds; both more than a 50% jump from the prior year. This was made possible through the hard work of our planning committee, generous sponsors and those who attended the event.

Each guest was greeted by our terrific team of volunteers and received their $20,000 in ‘funny money’ play chips to ready themselves for play at the gaming tables, which included blackjack, craps, roulette and poker. Guests were able to enjoy delicious food throughout the evening and an open bar of beer & wine. The ever-popular quintet from the UNC-Chapel Hill Jazz Band returned again this year and entertained us through the evening.

Guests enjoyed all levels of gaming from beginner to the experienced and were well guided and instructed by the wonderful staff of dealers. At the end of the night, we had lots of winners that cashed in their chips for raffle tickets and a chance to win some great prizes. For a donation, guests were invited to participate in a Grand Prize Raffle drawing donated by our sponsor, the Grove Park Inn & Spa. The winner received an overnight stay at the beautiful resort along with breakfast for two.

Throughout the night, silent auction items were displayed and made available by very generous donors. During the evening, a live auction was held for several unique items. The auction is always lively thanks to auctioneer and fellow member, Terry Lamb, who did an amazing job of working the bids from the crowd!

Teen & Parent CEO Retreat

Everyone Felt Lucky at Casino Night!

They got a job, bought insurance, fed the family, bought a house and had unexpected financial emergencies all in one day! Teens, siblings and parents got together February 10-12, 2012 at the Rockfish Retreat and Conference Center for the Teen & Parent CEO Retreat.

The program was facilitated by Baxter and was designed to help teens develop skills in career planning and financial independence. Thirty-three people attended the retreat that was planned by Hemophilia of South Carolina, Palmetto Health HTC and Hemophilia of North Carolina.

InsideChapter News & EventsResource CenterOn the Health FrontOn the National & Legislative Front

Save The Date

World Hemophilia DayApril 17, 2012

HNC 8th Annual CharityGolf TournamentApril 20, 2012The Preserve at Jordan LakeChapel Hill, NC

Blood Brotherhood & PartnersApril 21-22, 2012Charlotte, NC

HNC Adult RetreatApril 28-29, 2012The GraylynWinston-Salem, NC

Latin Union ProgramMay 5, 2012NC ZooAsheboro, NC

HNC Special Guest & Volunteer DinnerMay 18, 2012Sheraton ImperialDurham, NC

HNC Annual MeetingMay 19, 2012Sheraton ImperialDurham, NC

NC Advisory Boardfor Bleeding DisordersQ2 MeetingJune 1, 2012

Latin Union ProgramJune 23, 2012

Continued on page 5

Continued on page 4

2 HEMOPHILIA OF NORTH CAROLINA

260 Town Hall Dr., Suite A, Morrisville, NC 27560 • (800) 990-5557 • [email protected] • www. hemophilia-nc.org

H N C R E S O U R C E C E N T E R

MISSIONSTATEMENT

Hemophilia of North Carolina is a non-profit organization dedicated to improving the quality of life of persons affected by bleeding disorders through advocacy, education, promotion of research and supportive programs and services.

VISIONSTATEMENT

Hemophilia of North Carolina’s vision is for all persons affected by bleeding disorders to achieve their full potential without barriers or limitations, until a cure is found.

Contact Numbers

Hemophilia of North Carolina(800) 990-5557(919) 319-0014

National Hemophilia Foundation Office(800) 42-HANDIwww.hemophilia.org

Hemophilia Federation of America(800) 230-9797www.hemophiliafed.org

Community Health Charities of NC(919) 554-3272(Collect)www.healthcharities.org

About This Publication

THE CONCENTRATE is the official newsletter for Hemophilia of North Carolina. It is produced quarterly and distributed free of charge to request ing members of the bleeding disorder community.

We maintain a membership mailing list. However, we never release any personal information without your permission. You may occasionally receive information that is mailed from our office. Your response to these mailings will be of your own choosing and if you would like to “opt out” of all third party mailings, please contact us to remove your name from these mailings.

Hemophilia of North Carolina does not endorse any specific products or services and always recommends that you consult your physician or local treatment center before pursuing any course of treatment.

Hemophilia Treatment Centers

East Carolina UniversityBrody School of Medicine

600 Moye BoulevardPediatric Hematology/Oncology

MA Suite 333Greenville, NC 27834

Phone: (252) 744-4676Fax: (252) 744-8199

University of North CarolinaAt Chapel Hill

School of MedicineCampus Box 7016

Physician Office Building170 Manning Drive

Chapel Hill, NC 27599-7016Phone: (919) 966-4736

Wake Forest University BaptistMedical Center

The Bowman Gray CampusDepartment of PediatricsMedical Center Boulevard

Winston-Salem, NC 27157-1081Phone: (336) 716-4324

Fax: (336) 716-3010

Additional Medical Resources

Carolinas Medical CenterPediatric Hematology/Oncology

1000 Blythe BoulevardCharlotte, NC 28203

Phone: (704) 381-6800

Duke University Medical CenterHemostasis and Thrombosis Center

DUMC Box 3422Durham, NC 27710

Phone: (919) 684-5350http://htc.medicine.duke.edu/

Presbyterian Blume PediatricHematology & Oncology Clinic 301 Hawthorne Lane, Suite 100

Charlotte , NC 28204Phone: (704) 384-1900

Resource Information

American Pain Foundation (APF)1-888-615-PAIN (7246)Hemophilia Chronic Pain Support Grouphttp://painaid.painfoundation.org

American Society of PediatricHematology/Oncology847-275-4716www.aspho.org

Bleeding Disorders Legal Hotline1-800-520-6154

Centers for Disease Control & Prevention1-800-311-3435www.cdc.gov

ClinicalTrials.govA registry of federally and privately supported clini-cal trials conducted and service of the US National Institutes of Health. It gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details. This informa-tion should be used in conjunction with advice form health professionals.

Committee of Ten Thousand (COTT)1-800-488-2688www.cott1.org

Inalex Communications201-493-1399www.inalex.com

HIV/HCV NewsletterHemophilia Association of the Capital Areawww.hacacares.org

LA Kelley Communications1-978-352-7657www.kelleycom.com

Patient Notification SystemThe Patient Notification System is a free, confidential, 24 hour commumication system providing information on plasma-derived and recom-binant analog therapy withdrawals and recalls. 1-888-UPDATE Uwww.patientnotificationsystem.org

Patient Services Incorporated (PSI)Assists persons with chronic medical illnesses in accessing health insurance and pharmacy co-payment assistance.1-800-366-7741www.uneedpsi.org

World Federation of Hemophilia514-875-7944www.wfh.org

Dear Friends,

I recall fondly my first introduction to the bleeding disorders community through a meeting with several of the board mem-bers to talk about the Executive Director position at HNC. Al-though I was aware that if a person with hemophilia cut them-selves, they would not bleed to death, my knowledge past that was limited to internet searches and I expressed concern with my lack of education about bleeding disorders. I was assured that they would teach me what I needed to know and thus be-gan my journey.

Over the years, I learned so much through the guidance and leadership of my mentors as well as individuals and families who embraced me, taught me and grew with me at HNC. It has been a wonderful journey that offered experiences my fam-ily and I will hold close to our hearts and cherish for a lifetime. I’ve met a resilient group of men and other family members who’ve shared their story about contaminated blood products in the 1980’s and the devastating impact it had on their lives – never forget! I’ve watched children grow into teens and can say with confidence that we will have some outstanding leaders in the future. I’ve met a group of super-charged women and girls who are sure to ‘change the friggin’ world’ in raising aware-ness and supporting each other. Although my Spanish skills are admittedly very limited, I was completely embraced by our Latin Union Group community members. I’ve searched to-

gether with families for answers and support when faced with a diagnosis and challenges. The outstanding advocacy team has been very near and dear to my heart, as we canvassed the halls in Raleigh and beyond to help raise awareness and give a voice to the community. I will always be indebted to the physicians, nurses, social workers and others at the HTC’s and centers that give so much of themselves everyday to provide the best care and treatment to the community. I also remember fondly the leap of faith as we embarked on the first Hemophilia Walk in 2008 and what a wonderful event it has become.

I am a firm believer in doors opening and closing for reasons. As I continue the journey, I will be leaving my home and friends in North Carolina but returning to my family and roots in New Jersey where I can assist my parents. It is that time in my life when I look back and truly appreciate the sacrifices family has made for me and know it is now time for me to give back.

My family has forever been changed and blessed by the experi-ences we shared with you. I am grateful to have been a small part in the ongoing success of the chapter and met so many wonderful people who have influenced my life in very posi-tive ways. All the best on continued growth, prosperity, good health and happiness.

A heartfelt thank you –Sue, Chick, Christine & Charlene Cowell

3THE CONCENTRATE

Spring 2012

C H A P T E R N E W S & I N F O R M A T I O N

From the PresidentSue Cowell, the Executive Director of Hemophilia of North Carolina, is leaving HNC at the end of February and moving to the Northeast, both to pursue an exciting new career opportu-nity and to be closer to her elderly parents. Under Sue’s dynamic leadership, HNC has expanded dramatically, increasing the num-ber and variety of programs and services offered to the bleeding disorders community, and making our effort much more effec-tive by putting the organization on a firm and robust financial footing.

Sue’s passionate drive has been a boon to the bleeding disorders community. Under her energetic leadership, HNC has benefited immeasurably from programs designed to educate our commu-nity and health care professionals; and from fun-filled retreats which also promote physical and emotional health and well-be-ing for families, adults, teens, couples, and the newly diagnosed; and from advocacy efforts which have kept a finger on the state

and national pulses as health care looms large on the political scene. On Sue’s watch, HNC expanded or created a number of fundraisers, grant opportunities, and programs, including the Golf Tournament, the Hemophilia Walk, Casino Night, PACT, LEAD, Blood Brotherhood, SOAR, the Latin Union and our first ever research project, The Aging Study.

Words cannot express the depth of affection Sue has earned from our community! We are saddened by her leaving, yet we are also deeply grateful for the vibrant organization she has helped us be-come. Please join all of us in wishing Sue well as she begins this new chapter in her life, and thanking her for enriching our lives for the past five years.

Steve PerettiPresidentHemophilia of North Carolina

We also honored our 2011 Volunteer of the Year, George McCoy. Board member and HNC treasurer Kathy Register spoke about George and his many years of service to North Carolina and the bleeding disorders community.

The night concluded with a very special thank you to our sponsors, guests, organizing committee and volunteers. Each attendee received a special gift of as a thank you for their support and being our guest for the evening. Proceeds will help us to continue our goal of promoting opportunities to improve

the quality of life for those affected by a bleeding disorder. It is our vision for everyone to achieve their full potential without barriers or limitations, until a cure is found. Those that supported our event continue to make this vision a reality.

A very special thank you to the many individuals, organizations and companies for their continued support of this event and Hemophilia of North Carolina.

4


HEMOPHILIA OF NORTH CAROLINA


Everyone Felt Lucky at Casino Night! continued

Cheesecake Factory Chili's Duke Women's Basketball Factor 4 Life Sue Fletcher Georgina's Pizzeria & Restaurant Graylyn International Conference Center Matt & Erika Habib Harris Teeter Tiffany Holland Teme Levbarg Drs Sara Miller & David Howell

The North Carolina Symphony Charles & Kathy Register Ann Skinner Triangle Brewing Company Wine 101

Mr. Terry Lamb, Auctioneer* Casino Party Aces UNC Jazz Band Quintet Catering Works *Services donated

Sue Cowell Tiffany Holland Ann Skinner

Entertainment Sponsor

King of Hearts Queen of Hearts

Casino Night Sponsors

Casino Table Sponsors

Drugco Health Triangle Brewing Co. Wine 101

Captain's Tables

BioRx LLC The Cowell Group Matrix Health MedProRx The Ryan Party aVilasAliva

Special Thanks to Our Donors

Jack of Hearts Grand Prize Sponsor

Services Provided By

Casino Night Committee

CEO (Career, Education & Opportunities) Modules for the retreat included focusing on goal setting, career planning and finances. There was also a great session that was a team-based college/trade school research challenge and the Reality Store where teens got to shop for all those necessities in life.

We all enjoyed the facilities at Rockfish who were great hosts and kept the fun flowing with a campfire, high ropes course, climbing tower, zipline and team building. Also,

through the generosity of Paraclete XP Skyventure who provided free fly time to our group, many were able to experience indoor skydiving at this world-class facility under the guidance of professionals.

Our many thanks to Baxter for their support of this program!

5THE CONCENTRATE

Spring 2012


www.medprorx.com

No matter where you are, we are there

for you

(888) 571-3100

Your North Carolina based, Owned & Operated Specialty Pharmacy

Specialized Pharmacy Services

The MedPro Rx services include:

ANNOUNCING OUR ANNUAL2012 MedPro Rx “Education is Power” scholarship program.

PLEASE VISIT OUR WEBSITE AT www.medprorx.com TO APPLY.

All available factor replacement therapies for Hemophilia and von Willebrand Disease

Online Factor Tracker Treatment Log

Individualized pharmacy and nursing support, 24/7

Participating network provider with many insurance plans, including Medicare and Medicaid

Traducción de asistencia y terapia de apoyo para la comunidad hispana

Aging Research ProjectWe’ve had a great response to our research project but still have room for more participants! Please pass the following informa-tion along!

HNC is seeking research participants for study entitled Health- related Quality of Life Among Older Men with Hemophilia. The two-year study, initiated by Hemophilia of North Carolina is designed to obtain new knowledge about hemophilia and ag-ing that may provide important information to enhance care. All men aged 50 and over with a diagnosis of hemophilia are eligible to participate. Spouses, partners and care providers are also being recruited. All information will be kept confidential and no personal information will be released to third parties outside of Hemophilia of North Carolina. Participants will be compensated for their time.

If you are not eligible to participate but know someone who is, please tell them about the study.

Please contact Sue Fletcher, [email protected]

Teen & Parent CEO Retreat continued

6




Don’t miss the opportunity for your child to enjoy the summer camp experience at Camp Carefree, Victory Junction Gang Camp and Camp Rainbow! Summer session for Victory Junction is June 24-29 (Bleeding Disorders Week) and July 22-28 for Camp Carefree. Visit the HNC website at www.hemophililia-nc.org for more information.

We are fortunate to have many opportunities for scholarships in the bleeding disorder community. To assist you in your search, we have compiled information on our website at www.hemophililia-nc.org on some of the scholarships available and the companies that provide them. This list is not exhaustive and we recommend visiting the National Hemophilia Foundation (NHF) and Hemophilia Federation of America (HFA) scholarship web pages for additional resources. Your high school guidance counselor and your college financial aid office should also be able to help you find monies for your continuing education.

“the most powerful weapon youcan use to change the world.”Education

Lee Houston, RN, BSN, LNCCommunity Nursecel l 919.602.7055lhouston@hpcinternat ional.com

Philip Epstein, MPACommunity Consultantcel l 336.491.8238pepstein@hpcinternat ional.com

Service Nursing Pharmacy Communityw w w . h p c i n t e r n a t i o n a l . c o m

knowledge and the ability to achieve the highest quality of life by providing professional and compassionate care with education and community support.

1 . 8 0 0 . 7 5 7 . 9 1 9 2

CELEBRATING

Empowering patients with independence,

How does an author create a fictional character with hemophilia?

In the 1960s, Clyde Edgerton — a young, aspiring writer and part-time musician — frequented jazz clubs in his hometown of Durham, North Carolina. There he crossed paths with Harrison Register, a young jazz guitarist who happened to have hemophilia. Forty years later, Edgerton is now teaching at the University of North Carolina–Wilmington (UNC), and is also an award-winning, best-selling author. In The Night Train, Edgerton has included a minor character named “the Bleeder” — a jazz musician with hemophilia. Harrison Register was the inspiration for this fictional character.

The Night Train is a coming-of-age novel, set in the summer of 1963 in eastern North Carolina, in which the passion for music dissolves the racial divide for two teenagers, Larry and Dwayne. Larry, age 16, discovers jazz after learning gospel music on the piano and playing drums in his high school marching band. Dwayne, age 17, organizes a garage band and is influenced by the soul music and showmanship of James Brown. At a time of racial tension, sit-ins, and school consolidation, Larry lives on the west side of the railroad tracks with the other black families, while Dwayne lives in the white community on the east side of the tracks. For these two friends, it’s easy to share music, go fishing, and hang out together. Yet adults still impose their own rules of behavior for racial interaction.

Larry has a mentor, an African American musician named Josh, who has hemophilia. Josh plays guitar and piano with four white men at a bar called “The Frog.” Before Josh teaches Larry how to listen to musical notes by seeing their colors and feeling their shapes, he introduces himself: “I’m the Bleeder. That’s what they call me.”

A night train rumbles through the community, symbolically separating the town along racial lines. Yet Larry and Dwayne share the simple agenda of discovering music that will continually influence their lives, and their interactions ring true. The seriousness of their quest, aided by the recent technological advances of vinyl records, transistor radios, and reel-to-reel tape recorders, is balanced by their comical exploits. Edgerton, as in all of his novels, inserts unexpected and humorous interludes.

After the novel’s release, Harrison’s brother, Charles Register, contacted Edgerton. Charles also has hemophilia, and is webmaster for the organization Hemophilia of North Carolina.

He wanted to confirm that Harrison was the model for the Bleeder. Edgerton could not remember Harrison’s name, but he told Charles about the 25-year-old guitarist with hemophilia he’d heard playing around 1960. The time and place matched up. And according to Charles, “It was common knowledge that Harrison was a ‘bleeder.’ He certainly never made any attempt to hide the fact — limps and bruises are hard to hide.” An accomplished guitarist, Harrison was approached to play with famed guitarist Chet Atkins in Nashville, but he didn’t want to stray too far from Durham and his medical care at Duke and UNC hemophilia treatment centers. Unfortunately, Harrison died in 1973 from complications of his hemophilia and an inhibitor.

Fortunately for the bleeding disorder population, Charles Register and his wife Kathy have contributed immensely to Hemophilia of North Carolina since its inception over 35 years ago. In so many

ways, so many members of the bleeding disorder community are inspirations for us all.

© 2012 LA Kelley Communications, Inc. www.kelleycom.com

7THE CONCENTRATE

Spring 2012


Getting to Know a Character with Hemophilia

The Night Train (2011) by Clyde Edgerton

Richards Review Richard J. Atwood

Photo Credit: Charles Register

Harrison Register, circa 1960

8




Hemophilia of North Carolina is pleased to offer a relaxing and informative weekend retreat to its adult members (age 21 and over) with a bleeding disorder, or parent(s) of a child with a bleeding disorder. Each HNC attendee may bring one adult guest. This event will begin with breakfast at 10am and the program at 11am on Saturday, April 28th and conclude at 12 noon Sunday, April 29th, 2012.

We will host the retreat at the beautiful Graylyn International Conference Center. The center offers you a private estate of your very own! Just minutes from downtown Winston-Salem, Graylyn’s vast 55-acre property allows visitors to experience a world away from the bustle of city streets. Graylyn was once one of the largest private homes in North Carolina.

All accommodations, meals, refreshments and activities will be provided at no cost to HNC members and their guests through the generous support of our sponsors and donors.

This special retreat will feature: • Accommodations at the Graylyn International Conference Center 1900 Reynolda Road, Winston-Salem, North Carolina, 800-472-9596 • Saturday breakfast, lunch and dinner; Sunday breakfast and lunch

Inalex Communications will return this year to present the The Family Tune Up workshop, created especially for the bleeding disorder community. This workshop is intended for both men and women who have children with a bleeding disorder, as well as for adults with bleeding disorders and those that support them. It is presented in four major components: looking at both positive and negative ways men and women handle their anger, assertiveness, and aggression; how stress can become chronic and significantly impair your health; how bleeding disorders create special challenges; and opportunities for meaningful connections between you and your partner.

For additional information and online registration, visit our website at www.hemophilia-nc.org.

HNC Adult RetreatApril 28-29, 2012Graylyn International Conference CenterWinston-Salem, NC

Julie Baker252-578-7342

The SOAR (Support, Outreach, Advocacy, and Resources) Program is continuing to grow in 2012! We are adding members and volunteers to the SOAR group as well as training new members to share their stories and advocate for women and girls with bleeding disorders. We are also taking on a few new projects this year that will be funded by the PACT Grant that was awarded at the end of 2011.

We are going to be reaching out to school nurses and other school personal that are interested in becoming educated about bleeding disorders. Under the PACT Grant we will also be reaching out to media outlets to raise awareness about women with bleeding

disorders. Another project that is currently in progress is a video of women and girls with bleeding disorders sharing their “stories” as well as some educational information. This video will be beneficial when educating the public, school nurses, as well as members of legislation. SOAR will be holding a legislative dinner for the Women’s Caucus of North Carolina in late spring.

SOAR has also started providing support groups for women and girls with bleeding disorders. The goal is to have regional support groups so that there is a group that is convenient for each member to attend. Thus far, we have had one support group meeting in the Charlotte area and have a second one planned for April. Support groups will be coming to Winston-Salem and the RDU area very soon!

We will also be planning some fundraising events in the near future so keep your eyes and ears open for fun opportunities to help support women and girls with bleeding disorders. SOAR also still has jewelry for sale and will be coming out with a new line of jewelry very soon! Check out HNC’s website for more details about the SOAR Program!

SOAR Group Gets Artistic!

9THE CONCENTRATE

Spring 2012


A big thank you to Ann Skinner for organizing the SOAR Wine & Design fundraiser on February 4th. The group had great time in creating their works of art! We also thank Ann for her dedication in helping women & girls with bleeding disorders to become empowered. SOAR was created in order to bring support, outreach, advocacy, and resources to women & girls with bleeding disorders in NC. We encourage everyone reading this to please take a SOAR flyer at our next event and pass it on to a woman you may or may not know.

SOAR Update By: Nicole Bailey, HNC




Join us on Saturday, May 19th for an informative, educational and fun gathering for the whole family. This year we are excited to hold our 2012 annual meeting at the Sheraton Imperial in Durham.

This full-day event will include a wide variety of programs for the adults

and fun activities for the children. The HNC annual meeting is always a great opportunity to meet the experts, network with other families, and learn about the latest products available.

This year our theme is “Are You a Savvy Consumer?”. Sessions will include Pulse on the Road, by LA Kelley Communications. This educational and interactive, live symposium will feature different expert speakers who will address a variety of insurance and healthcare reform topics of immediate and relevant importance to families with bleeding disorders. Other topics are understanding your rights, 504/IEP information for your child, advocating for your needs, knowing what to expect as a standard of care from your

service provider, what it means to be a responsible patient and get the most from your visits, and information about research, clinical trials and studies.

Children and Teen Tracks will include a variety of fun, interactive sessions including the BioBuddies Workshop and My Amazing Blood & Bloody Sunday’s (ice cream sundaes, that is).

At the conclusion of the meeting, everyone will be invited to enjoy a baseball game and dinner at the Durham Bulls Athletic Park. The game (Bulls vs. Charlotte Knights) will begin at 7:05pm. If anyone is interested in staying over in the area on Saturday night, rooms are available at the Sheraton Imperial for $108 per night, plus tax. Information on our room block is available on our website at www.hemophilia-nc.org.

Look for your invitation soon as well as online registration and additional information on our website at www.hemophilia-nc.org.

We hope to see you there!

2012 Friends of HNCWe would like to acknowledge the following individuals who generously donated to HNC during this quarter of 2012.

We extend a sincere thank you to our supporters…many of whom contributed several times during this period.

DonorsThe Barnes Family • Karla Barnes • Betsy Beach • Spencer Brisson • Mark & Jo Anne Buckley

David & Kathleen Caron • Nicole Conger • Cheryl & Gary Darr • Suzanne Duncan • Sue Fletcher, PhDMr. & Mrs. W. Allen Heafner • Kelly Hodge • Sunil Jain • Anne Lowish • Steven Koltz

Shih-Min Liu Hsu • Richard Miller-Haraway • Barbara Black Pollock • Sherri RedfieldGary & Ann Skinner • Nancy Smoak • Daniel Turnbull, DDS • Suzanne Valdivia

Robert & Joanna Waggoner • Jerry & Ann Williamson • Wine and Design – Wake Forest, NC

Donations Made In Honor of Spencer Brill & in Memory of his grandfather, Gerald ErvinAndrea Brill & Family

Donations Made In Honor of Dalton & Heather DawesSieglinde Uffelman

Donations Made In Loving Memory of Kasey E. Fryeand in Honor of Kevin & Melodee FryeTracy Hamlin • Eric Lineberger & Family

Donations Made In Loving Memory of James Richard McCoy, 1935 - 1964George McCoy

HNC Annual MeetingMay 19th, 2012Sheraton Imperial Hotel & Convention CenterDurham, NC 27703www.sheratonrtp.com

This past October, our son, Miles Landon Davis, who has Severe Hemophilia A, was diagnosed with Inhibitors. We all know the impact that Hemophilia has on our lives, and most of us have at least read, if not experienced the impact of Hemophilia with Inhibitors.

Of course, we were devastat-ed on many levels. We stayed in the hospital for about a

week and a half while our son recovered from a bleed and port sur-gery. Once we arrived home, I received an email from a childhood friend, Sarah Nagle. She wanted to host a fundraiser for us to help with Landon’s medical bills.

Sarah is an excellent Zumba Instructor, so she decided to plan a Zumbathon. The planning began, and the fundraiser started coming together.

About a week before the event, the local newspaper interviewed my husband and I, and the article ran. The article was mainly about raising awareness for Hemophilia and giving everyone an understanding of what we go through on a daily basis.

Landon was admitted to the hospital that same day for a fever. He started IV anti-biotics immediately in case the fever was from a port infection. The news spread, and the response we got from the community was unbelievable. The newspaper reporter emailed me and said she wanted to run another article to let every-

one know what was going on with Landon. This article ran a few days before the Zumbathon and informed everyone that the event was still on.

Landon spent one night in the hospital and came home with no port infection. Praise God!

On Saturday, March 3, 2012, a Zumbathon was held at my former high school. As I entered the gym, I was overtaken by emotions. I don’t know how I held it together throughout the entire event. I was amazed at all the people who kept pouring in. Friends, family, media, strangers, and even our Mayor showed up to offer their support!

The gym was packed with such amazing people. It was almost sur-real. It is very humbling to be in a room full of people who just want to help your son and do whatever they can. It touches your life in an unbelievable way.

It was a fun-filled day of Zumba. Hemophilia T-shirts, Zumba T-shirts, shimmy skirts, snacks, and drinks were sold. There were

over 125 dancers, 12 instructors, and numerous people who just showed up to help us out.

It was an absolutely amazing day. Not only have I been able to raise awareness in our community about Landon’s condi-tion, but people have also been placed in our lives that we would have never known otherwise.

I will forever be thankful to Sarah and everyone who helped put this event on and showed up to support us. I cannot say thank you enough. We will never forget what our commu-nity has done for us.

We know that there is a reason, and that God has a plan for everything we are going through, and we are holding onto and trusting that promise. God has placed very special people in our lives to support us on this journey, and for that, we are truly blessed.


Blessings in the Midst of a Storm By: Ashley Horne Davis

11THE CONCENTRATE

Spring 2012



Unión Latina Hemofilia

Latino Supplement – Suplemento Latino Primavera/Spring 2012 Página/Page 1 www.hemophilia-‐nc.org

Hemophilia Latin Union Group

de

Esta es una publicación para la Comunidad Latina de Hemofilia de Carolina del Norte y para todos aquellos interesados en

crear un lazo de amistad e intercambio con esta Gran

Familia Latina.

This is a publication for

the entire Latino Community with

Hemophilia living in North Carolina and for all those willing to establish a bond

of friendship and exchange with this Great

Latino Family.

There are not words enough to express our gratitude to Sue. We are so thankful for all her support to our Latino Community. Sue left HNC to move up to northeast to stay closer to her parents and also to undertake a new professional adventure. Since the very first Latin Union Group meeting in 2007 until our first program this year, she never stoped demonstrating a genuine interest in offering educational programs in Spanish for the best interest of all our Spanish speaking families. We are sure that she will find nothing but happiness around her parents and success in her new adventure. Sue, you will be missed for each one of our Latino families, and remember you can count with us as your dearest friends.

Calendario de Reuniones -‐Meeting Calendar-‐

Sábado 05, Mayo

Celebración de los Niños NCZoo/ Asheboro, NC

Sabado 23, Junio

Verano: Bienvenido Concord, NC

Septiembre 14 al 17

Retiro Familiar de la Unión Latina

Lugar por determinar

Sábado 20, Octubre Caminata por la Hemofilia

“Hemophilia Walk” Crabtree Lake, Morrisville,

NC Las fechas y los lugares pueden

cambiar.

Para mas información llama a Guillermo Sánchez:

1-‐855-‐462-‐5286 O escríbenos un email.

unión.latina@hemophilia-‐nc.org

Sue Cowell, mucha surte en tu próxima aventura!

No hay palabras suficientes para expresar nuestro agradecimiento a Sue por brindar su total apoyo a nuestra comunidad Latina. A partir de Marzo, Sue dejó la posición de Directora Ejecutiva de Hemofilia de Carolina del Norte para iniciar una nueva aventura profesional y con la intención de ir a vivir cerca de sus padres al noreste del país. Desde la formación del Grupo de la Unión Latina en el 2007, hasta la primera reunión de este año, Sue demostró su interés en que las familias latinas se beneficiaran con programas educativos en español, los cuales, se han estado realizando tomando en consideración los aspectos culturales de nuestra comunidad. Estamos seguros que el estar cerca de sus padres le traerá alegría. Le deseamos muchos éxitos en el ámbito profesional. Sue, te extrañaremos, y recuerda siempre, que las familias Latinas somos tus amigas.

Sue Cowell, good luck in your new adventure!

13THE CONCENTRATE

Spring 2012

Para nuevos lectores y miembros / For new readers and members Misión: Hemofilia de Carolina del Norte es una organización no lucrativa, dedicada a mejorar la calidad de vida de personas afectadas por algún desorden sanguíneo, brindándoles apoyo en educación, promoción de estudios de investigación y promoviendo programas y servicios para esta comunidad. Nuestra Visión: que todas las personas afectadas por algún desorden sanguíneo logran el desarrollo total, sin barreras o limitaciones, hasta que se encuentre una cura.

Latino Supplement – Suplemento Latino Página/Page 2 www.hemophilia-‐nc.org

Consejo Rápido

Prevención es la clave para una vida saludable.

Los sangrados dentales,

pueden ser menos frecuentes si tomas las siguientes medidas:

1. Lavar con

frecuencia (por lo menos tres veces al día) los dientes utilizando un cepillo suave y sin ejercer mucha fuerza.

2. Visitar al dentista

por lo menos una vez al año. Y mencionando con anticipación el desorden sanguino y sugerirle que se ponga en contacto con tu hematólogo.

¡Un buen inicio de año! Comenzamos con el pie derecho el 2012. Kristina Núñez, consejera del Departamento de Genética del Hospital de la Universidad de Duke, nos explicó de una manera detallada y clara, la forma en que la genética determina las posibilidades para que una persona nazca con hemofilia. Utilizando un divertido juego nos ensenó y respondió a nuestras dudas acerca del Como y Porque un menor puede nacer con hemofilia, sin existir antecedentes familiares de esta condición; además de esclarecernos que las mujeres, al mismo tiempo de poder ser portadoras de genes con hemofilia, pueden también presentar síntomas característicos de los desordenes sanguíneos, como lo son la presencia de sangrados prolongados. Para comenzar el año decidimos reunirnos en el “Marbles: Museo del Niño”, en Raleigh, NC., en donde pequeños y grandes nos divertimos por igual. Te recomendamos que revises con frecuencia la pagina en internet de Hemophilia-‐nc.org para enterarte de la próxima vez que Kristina nos presente esta interesante platica. Queremos agradecer a por apoyarnos en la realización de este evento educativo bilingüe, para beneficio de las familias del área del Raleigh, Chapel Hill y Durham.

If you are a Friend, Social Worker, Physician, or just happened that you know someone from

Latino America living with a bleeding disorder, tell them to contact us, we provide with a great educational and networking opportunities in

their language: Spanish. Help us now and give the opportunity to change a

life!!!



O N T H E H E A L T H F R O N T

LEARN MORE ABOUT EVENTS IN YOUR AREA AT www.LINKmeetup.com

CONNECT TO THE COMMUNITY. make the LINK.

Learning. Insights. Knowledge. LINK educational programs provide an interactive forum for patients and caregivers to provide feedback while learning about the latest in the community. Program topics range from health insurance to treatments to lifestyles. So, if you’re seeking the latest on real-life issues — connect, learn and make the LINK.

© 2012 Bayer HealthCare Pharmaceuticals Inc. All rights reserved. BAYER, the Bayer Cross, and LINK are registered trademarks of Bayer. 01/12 Printed in USA. KN10001311

Common HIV Drug Can Cause Kidney DiseaseAccording to a recent study from the University of California at San Francisco (UCSF), tenofovir, one of the more effective and commonly prescribed antiretroviral therapies for HIV/AIDS, is associated with significant and progressive risk of kidney damage and chronic kidney disease. The lead investigator of the study was Rebecca Scherzer, PhD, a researcher and statistician at the San Francisco VA Medical Center (SFVAMC) and UCSF.

Scherzer and her colleagues analyzed the electronic health records of 10,841 HIV-infected veterans who began treatment with antiretroviral therapies between 1997 and 2007. The mean age of the subjects was 46; 98% were men. The researchers found that this use of tenofovir (Viread®) was associated with a higher risk of kidney disease, even in individuals who had no pre-existing risk factors for it. Tenofovir, which comes in pill form, can be taken alone or in combination with other HIV antiretroviral drugs. It is a first-line therapy for patients with HIV, favored for its potency, easy dosing and ability to control viral load.

Investigators found that each year of treatment with tenofovir was associated with a 34% rise in risk for proteinuria, protein in the urine (a key indicator of kidney damage); an 11% risk of a rapid decline in kidney function; and a 33% increased risk of developing chronic kidney

disease. These results were independent of other factors, including age and whether the veteran had high blood pressure, diabetes or hepatitis C. After they stopped taking tenofovir, patients remained at elevated risk for kidney complications for six months to one year.

The authors reported that these damaging side effects may be irreversible, prompting them to stress the importance of closely observing patients on an ongoing basis. “The best strategy right now is to work with your health care provider to continually monitor for kidney damage,” said coauthor Michael G. Shlipak, MD, MPH, chief of general internal medicine at SFVAMC, and professor of medicine and epidemiology and biostatistics at UCSF. “Early detection is the best way to determine when the risks of tenofovir begin to outweigh the benefits.”

The researchers acknowledge that one of the limitations of the study was a short treatment period and follow-up after patients stopped taking tenofovir. Further research is needed to corroborate their findings.

The study, “Association of Tenofovir Exposure with Kidney Disease Risk in HIV Infection,” was published online by the journal AIDS on February 4, 2012.

Source: UCSF news release dated February 10, 2012

15THE CONCENTRATE

Spring 2012


I will take control

von Willebrand Factor/Coagulation Factor VIII Complex (Human)

www.wilateusa.com

Investigators Publish Two Studies Using UDC DataA pair of studies in the December 2011 edition of the American Journal of Preventive Medicine highlighted some notable findings from data collected by the Centers for Disease Control and Prevention (CDC).

In the first study, “Insurance, Home Therapy, and Prophylaxis in U.S. Youth with Severe Hemophilia,” the authors reviewed data from the CDC’s Universal Data Collection (UDC) project, a voluntary surveillance system that relies on patient enrollment. The lead author of the study was Judith R. Baker, MHSA Department of Pediatric Hematology/Oncology, University of California Los Angeles.

Included in the study was a nationwide cohort of 3,380 boys and young men with severe hemophilia A or B, ages 2-20 years old, all of whom had received care at a federally funded hemophilia treatment center (HTC) between January 1, 2008, and December 31, 2010.

The results showed that 90% of patients used home therapy and 78% were on a prophylaxis treatment regimen. Only 2% were uninsured. Investigators found that those with health insurance were much more likely to be on prophylaxis (77%) vs. those who were uninsured (21%). The data also showed significant correlations between race, age, inhibitor status, and HTC use, home therapy use and prophylaxis.

“Youth with severe hemophilia who annually obtain care within the U.S. HTC network had a high level of health insurance, home therapy, and prophylaxis. Exploration of factors associated with insurance coverage and yearly HTC utilization, and interventions to optimize

home infusion and prophylaxis among youth of African-American and ‘other’ race/ethnic backgrounds are warranted,” concluded Baker and her colleagues.

Investigators also drew on UDC data for the second study, “Physical Functioning in Boys with Hemophilia in the U.S.” The lead author was Paul E. Monahan, MD, Department of Pediatrics, Hematology/Oncology, University of North Carolina at Chapel Hill. Researchers reviewed 15 potential predictors of poor physical functioning in boys with hemophilia A and B (up to 18 years of age) who had received care at an HTC between 1998 and 2008.

They found that several characteristics were associated with limitations of joint function, including increasing age, presence of joint bleeding and inhibitors. African-Americans were also independently associated with activity restrictions. In addition, obesity and medical coverage with Medicaid, as opposed to private health insurance, were independently associated with multiple poor outcomes.

“Interventions focused on eliminating inhibitors, improving outcomes for African-American children with hemophilia, and maintaining healthy body weight are warranted. In addition, strategies are needed to assure adequate insurance coverage for all people with hemophilia to eliminate economic barriers to optimal functional outcomes,” the authors concluded.

Source: Obesity, Fitness & Wellness Week, January 7, 2012



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

©2011 Caremark. All rights reserved.

www.CVSCaremarkSpecialtyRx.com

Trust the Experience

Wayne S. Cook, III, Customer Relations [email protected]

Vicki McDonald, Customer Service Representative [email protected]

Merck Warns of HCV/HIV Drug InteractionsIn February 2012, Merck informed physicians in the U.S. of the results of a pharmacokinetic study assessing interactions between Victrelis™, the company’s protease inhibitor (PI) drug boceprevir for the treatment of the hepatitis C virus (HCV), and certain HIV antiretroviral (ARV) drugs.

In May of 2011, two PIs were approved by the U.S. Food and Drug Administration for use in HCV genotype 1 patients: Victrelis and Vertex Pharmaceutical’s telaprevir (Incivek™). These drugs help augment the standard HCV combination therapy of interferon and ribavirin.

According to a Merck press release, administration of Victrelis with the ARV ritonavir (Norvir®) in combination with atazanavir (Reyataz®) or darunavir (Prezista®), or with lopinavir/ritonavir (Kaletra®) resulted in reduced concentrations of both classes of drugs in the blood. Merck stated that these drug interactions may be “clinically significant” for patients infected with both chronic HCV and HIV, decreasing the effectiveness of the medicines when administered together. Merck has shared these data with regulatory authorities in the countries where Victrelis is approved or under review. It is now up to these agencies to review the data and consider changes in labeling.

In December 2011, a group of Maryland physicians published provisional treatment guidelines for the use of PIs in patients co-

infected with HIV and HCV in the journal Clinical Infectious Diseases. Although the new PIs were not approved for use in co-infected patients, interim data showed that these patients had a higher virological response when a PI was added to peginterferon/ribavirin and that adverse events were no different than patients with HCV alone. Physicians are interested in the possible off-label use of these drugs in co-infected patients because: their liver disease progression is more accelerated; pegylated interferon/ribavirin is less effective for them; and liver transplantation is neither highly successful nor widely available to them.

“Though Victrelis™ is not indicated for the treatment of chronic HCV in those who are also infected with HIV, we recognize that some physicians have prescribed or may be considering prescribing Victrelis™ for patients taking ritonavir-boosted HIV protease inhibitors. We felt it was important to share these data as part of our commitment to patient safety and transparency,” said Robin Isaacs, vice president, Clinical Research, Infectious Diseases, Merck Research Laboratories. “What is most critical to remember is that all patients taking medicines for chronic HCV or HIV, or both, should not discontinue their medication regimens without first consulting with their physicians.”

Source: Merck press release dated February 8, 2012


17THE CONCENTRATE

Spring 2012

Researcher Support Critical to New Drug Development By Neil Frick, MS

The bleeding disorders community is in a unique period of drug development. Almost every pharmaceutical company currently producing factor products is developing new products that are being examined in humans in clinical studies. The advances of these products range from increased safety to longer half-lives and different formulations. All are being developed to improve the lives of people with bleeding disorders. (See HemAware Winter 2012, page 20, “Treatment Breakthroughs”.)

The National Hemophilia Foundation (NHF) has been supporting novel ideas in research since 1972. Through the Judith Graham Pool Postdoctoral Fellowship, NHF has funded close to 80 researchers in basic science to understand the genetics of hemophilia and develop better testing.

Since 2000, NHF has provided Career Development Awards to more experienced researchers, many of whom have become directors at hemophilia treatment centers (HTCs) and established their own laboratories to search for a cure for bleeding disorders.

The NHF/Baxter Clinical Fellowship has been awarding fellowships to physicians since 2003. This program provides academic hospitals the funding and time to develop the future of clinical physicians who specialize in bleeding disorders treatment. To provide the continued expert care patients receive from their hematologists, NHF has

graduated 17 physicians from the program who have continued to work in the field of bleeding disorders.

NHF also supports drug advancements through its Medical and Scientific Advisory Council (MASAC). MASAC held a Consensus Conference on the Impediments to Clinical Research in November 2010 to discuss how to make sure new products are made available to consumers.

A questionnaire was also distributed to patients at NHF’s Washington Days in February 2011 about their involvement in a clinical research study. About half the patients had not been involved in clinical trials because none were offered at their HTC. The other half had participated in a study and took pride in having helped develop better treatments. In 2012, NHF will publish an article in a peer-reviewed professional journal on the discussion that took place at the Consensus Conference. This will allow all members of the bleeding disorders community to provide input that ensures that more advanced products can make it to market and improve the lives of people with bleeding disorders.

Neil Frick, MS, is the vice president for research and medical information at the National Hemophilia Foundation.

Reprinted from HemAware, Winter 2012. ©2012 National Hemophilia Foundation




O N T H E N A T I O N A L & L E G I S L A T I V E F R O N T

My dad and I took a trip up to Washington D.C. to educate our legislators on the importance of raising awareness of the needs and concerns of the Bleeding Disorders community.

We drove to DC, arriving at the Marriott Gateway around 4:00 pm. We registered and at 5:30 and had a training session on what we would be doing the next day on the hill. I found the training a bit overwhelming because there was a lot of information to comprehend. After the training we had a nice dinner and I went to my room while my dad proceeded to mingle and talk to other members of the community that he had not seen in a while. On Thursday morning we headed to the hill after nice breakfast. We arrived on the hill around 9:00 am and had Legislative Briefing. After the briefing my dad and I, along with another family, proceeded over to Rep. Renee Ellmer’s office for an appointment at 10:45 am. The meeting went very well and Rep. Ellmer’s was very receptive. Our next meeting was at 12:45 with Rep. Sue Myrick. Although we did not have the opportunity to meet with her personally we were able to meet with one of her staff members who has met with the hemophilia community in years past and understands the issues at hand.

We shared with the Reps. the current status of the one-hundred and thirty-five HTC (Hemophilia Treatment Centers) currently in the U.S., but due to the budget cuts, surveillance at eighty-five HTC’s may be cut.

If the Affordable Care Act is repealed people that may have a pre-existing condition may not be able get Health Care Insurance. Also if the ACA is repealed this could reinstate the lifetime caps on some insurance policies. Parents that have their children registered on their Health Insurance may also not be able to keep their children on their policy if the ACA is repealed.

We also spoke to our legislatures about co-sponsoring HR 1919, which will help to increase the diagnosis and screening of those who may have a Bleeding Disorder, people will be screened and diagnosed accurately.

This was a “wow on wow” experience for me. I never thought I would ever get the opportunity to talk to our legislators. I actually did go to D.C. as a child but I was only three years old at the time, so my memory’s a little foggy being it was so long ago.

Many members of HNC attended NHF Washington Days on March 7th-9th. The group met with others from around the country to address important issues facing the community including maintaining federal funding for the national network of specialized treatment centers providing comprehensive care for people with bleeding and clotting disorders.

HNC members Crystal & Jacob Hoernlein were part of the delegation and shared these thoughts – “We had a great Washington Days experience! I would like to encourage you all to follow up with your legislators, requesting them to restore CDC support for the full network of HTC’s. The CDC is proposing to reduce the number of HTC’s that maintain data collection on blood disorders from 135 to only 50 in its FY 2013. A reduction to the HTC surveillance program would compromise effectiveness in monitoring the safety of the blood supply, improving treatment and prevention strategies, and ensuring access to specialized care.”

If you are interested in a sample letter to mail to your legislators, please feel free to contact Crystal at [email protected].

HNC Members attendNHF Washington Days

Summary of Washington Days in Washington DC OF 2012By Emma Davis-Ingram (Member of the HNC Youth Leaders for Change)

Jacob Visits DC

19THE CONCENTRATE

Spring 2012


Starting in 2014, individuals and small business will be able to purchase health insurance plans in a “virtual marketplace” called a health insurance exchange. So the exchange will not technically be a physical location, but rather a place where individuals can go online and browse insurance offerings based on personal criteria they identify (i.e., age, health status, and other personal characteristics). However, here must also be an in-person option for individuals to apply for and purchase a health plan (e.g.,, a person should be able to apply for coverage at a local health department or social service office).

By law, the states must have an exchange set up by 2014. The Department of Health and Human Services (HHS) has so far awarded 16 states and the District of Columbia multimillion dollar exchange establishment grants. If they decline or are not fully completed in their exchange implementation, the federal government will operate the exchange on the states behalf−this is similar to what occurs in the Pre-existing Condition Insurance Program (PCIP).

States will have various options in developing and operation their exchange. States can operate the exchange themselves; have the federal government operate the exchange; or use a state/ federal partnership model that combines state and federal functions. States may also have the option of a “federally facilitated exchange.” In this option, a state can decide to take over operation of the exchanges or hand it back over to the federal government after 2014.

When someone applies for coverage, the exchange will make a determination of their eligibility for the premium tax credits (this will go toward the payment of the health insurance premium based on income and family size) as well as for Medicaid, the Children’s Health Insurance Program (CHIP), and the Basic Health Plan (if states chose to offer it).

Though 2014 may seem far away, it isn’t in terms of implementation. States must show progress by Jan 2013, but states do have some additional flexibility in implementation if they are not prepared. For most states, creating an exchange requires the state to pass legislation to create such an entity. Depending on when the particular state legislature convenes, they may have only one legislative session to do so. Also, exchanges must be a governmental agency – an existing executive branch agency or an independent public agency – or a non-profit entity established by the state.

In addition, the federal government has established minimum criteria for certification of health plans that can be offered in the

exchange. These standards include offering the essential benefit package (which is discussed below); cost-sharing limits; being licensed and in good standing to offer health insurance; quality standards established in the law; offering at least one qualified health plan at the silver and gold benefit levels; child-only plan to children under 21; and no discrimination on basis of race, color, national origin, disability, age, sex, gender identity and sexual orientation. The law also requires HHS to establish provider network adequacy requirements to ensure health plan enrollees have a sufficient choice of providers. States can require that health plans sold in state health insurance exchanges also cover state mandated benefits; however, a state must pay for the coverage of these benefits. This is of great concern because without the financial incentive many fear that states will roll back their state mandates, leaving many without the standards of care they have worked hard to receive.

Policy News − Coming Soon:Health Insurance Exchanges and Essential Health Benefits

Continued on page 20




Policy News continued

Essential Health Benefits Health plans sold in the exchange or in the individual or small group market must cover federally mandated essential benefits. Essential benefits refer to what the plans will actual offer in coverage as a baseline for services, treatments, etc. It is a starting point for health insurance plans; they will be mandated by law to offer these benefits to the public for purchase. It is important to note that the law exempts large-group health plans, as well as self-insured ERISA plans and ERISA-governed multi-employer welfare arrangements from the essential benefit requirements. Be aware of the type of plan you have in order to determine what parts of the law apply.

Here are the general essential health benefit categories required by law: emergency services; hospitalization; maternity and newborn care; mental health and substance use disorder services;

prescription drugs; rehabilitative and habilitative services and devices; laboratory services; preventive and wellness services; chronic disease management; and pediatric services, including oral and vision care.

The process for determining the specifics for essential health benefits is ongoing. After the law was passed, the HHS instructed the Institute of Medicine (IOM) to do a study on how the essential benefits should be designed. The IOM provided recommendations on various items, including how benefit packages should be developed and updated over time, coverage decisions and defining medical necessity. In December, HHS released a bulletin to provide information and solicit comments on the regulatory approach that the Department of Health and Human Services (HHS) plans to propose to define essential health benefits (EHB) under section 1302 of the Affordable Care Act.

Learn. Explore. Connect With Our Hemophilia

Community on Facebook.

Find us on Facebook.com/OurHemophiliaCommunity

RUS279607-01 © 2011 Pfizer Inc. All rights reserved. Printed in USA/March 2011

Continued on page 21

21THE CONCENTRATE

Spring 2012


HFA has a set of recommendations around the development of essential health benefits: Health plans should look to medical literature and treatment guidelines recommended by medical and patient organization to determine standards of care for patients with rare and chronic conditions such as bleeding disorders. The benefits should be designed to encourage patient access and not impede patients from obtaining needed treatments and specialized care. An essential benefits package should always include a process to appeal a claim denial. That process should provide assurance that the insurer has an obligation to first confer with the patient’s physician to discuss a possible denial and the grounds for rendering such a decision.

Physicians should be allowed to formulate the best treatment regime with their patients at the appropriate site of care whether in the hospital, outpatient clinic, office of the physician, hemophilia treatment center (HTCs) or the home setting. As advances in medical evidence or scientific advancement are being uncovered and approved through the FDA, as well as a peer reviewed medical journals stating the improved/decreased health outcome, HHS must put in place expeditious pathways for the inclusion of new therapies and treatments in the essential benefits package when these new products or new information become available.

HFA opposes any additional limits on specific or total benefits in the packages. HFA recommends prohibiting the implementation of treatment caps, prior authorization, utilization management or other types of restrictions by cost or in limits on treatments (in particular those approved by the United States Food and Drug Administration (FDA). Any governing body moving to phase out a given state mandate should be made cognizant of the possible disruption in coverage that might ensue for these affected.

What you can do3 Make your state officials – including health insurance exchange boards, governing organizations (if created in your state) and legislators – aware of standards of care for individuals with bleeding disorders. 3 Use the MASAC guidelines, already implemented standards, or pending standards legislation as examples.

3 Stay updated on your state’s actions in health care reform, especially on health insurance exchanges.

States have been and will be holding public hearings and introducing and passing legislation to set up various aspects of health reform. Below are some helpful resources to help you keep on top of the frequent changes.

http://healthreform.kff.org/tags/exchanges.aspx

http://www.ncsl.org/default.aspx?tabid=21393

http://statehealthfacts.kff.org/healthreformsource.jsp

http://hemophiliafed.org/what-we-do/advocacy/priorities/ employee-health-benefits-ehbs/

Source: Hemophilia Federation of America; Dateline; Winter 2011

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Policy News continued



23THE CONCENTRATE

Spring 2012

Membership ApplicationName: ________________________________________________Address: _______________________________________________City: __________________________________________________State: _______________ Zip: ____________________________Home Phone: ___________________________________________Cell Phone: _____________________________________________Email: _________________________________________________

Check One_____ I am a person with a bleeding disorder. Type _____ (ie. VII, IX, VWD)_____ I am a family member of a person with a bleeding disorder. Relationship _________________________________ Type of bleeding disorder ____________________________ I am a medical professional._____ I am an interested person._____ I am a currently active member – information update.

M E M B E R S H I P I N F O R M A T I O N

The Hemophilia of North Carolina organization gratefully accepts donations in support of its programs and services. Your dollars directly impact the bleeding disorder community by providing education to parents, scholarship opportunities and financial assistance for families in crisis.

For new members,please complete the following application form.

For existing members, we are currently updating our datebase and would like to make sure we have the most current contact information for you. Please take a moment to fill in the application and check “currently active member – information update”.

Please mail completed application to: Hemophilia of North Carolina 260 Town Hall Dr., Suite A Morrisville, NC 27560

Please make checks payable to Hemophilia of North Carolina. Your donation may be tax deductible to the extent allowed by law. We are pleased to send you a receipt for your donation.

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260 Town Hall Dr., Suite A, Morrisville, NC 27560(800) 990-5557 • [email protected]. hemophilia-nc.org

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Saturday, October 20thLake Crabtree County Park

www.hemophilia-nc.orgHemophilia of North Carolina is a chapter of the National Hemophilia Foundation, a chapter member

of the Hemophilia Federation of America, a member agency of Community Health Charities of North Carolina, a member of the NC Center for Nonprofits and a member of the Better Business Bureau.

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Everyone Felt Lucky at Casino Night! - Hemophilia of …...2 HEMOPHILIA OF NORTH CAROLINA 260 Town Hall Dr., Suite A, Morrisville, NC 27560 • (800) 990-5557 • [email protected]