The Infusion Inquirer - Walgreensaccomplishment in New York City traffic!” Last October, the staff received a call at 4:50 p.m. on a Friday from an Oklahoma Walgreens-OptionCare

Hemophilia Services

Volume 9, Number 1

The Infusion Inquirer

Letter From the Editor ...............2

Going Green ............................. 3

Center of Clinical Excellence.. 4

Clinician’s Corner ...................... 5

Von Willebrand Disease ......... 6

Supporting Patients ................. 8

Kids’ Korner .................................9

Washington Days ...................10

Insurance Matters....................11

Also in This Issue:

For adolescents, exercise is extremely impor-tant. In general, adolescents have a strong desire for peer approval, which participating in an athletic event can provide.1 The booklet Hemophilia: The Young Adult Years (11 – 18) points out that increased self-esteem leads to other benefits: “If you have a positive self-image, it will be easier to make friends, solve problems and become more independent.”2

Physical fitness can also have a direct impact on the reduction of bleeding episodes. “Stud-ies by orthopedists and physical therapists have shown that children whose joints are supported by well-developed muscles are better able to withstand the traumas of daily living.”1

A Personal Trainer Unfortunately, research alone does not motivate adults or their children to maintain a regular exercise program. A possible moti-vator is one used in commercial health clubs across the country—personal trainers who coach and mentor. Many people pay trainers to encourage, motivate and push them to exer-cise regularly. This concept can also be effective in motivating children and adolescents.

The power of a mentor has been documented by the oldest mentoring program in the United States—Big Brothers Big Sisters. In 1992 and 1993, approximately 959 boys and girls in seven states, ages 10 through 16, were part of a study in which half were assigned to a men-tor and half to a waiting list. The results were dramatic. Eighteen months later those who had Big Brothers or Big Sisters were: 46 percent less likely to begin using illegal drugs, 27 percent less likely to begin using alcohol, 52 percent less likely to skip school and 37 percent less likely to skip a class. They were also more

How to Motivate Children With Bleeding Disorders to Adopt an Active Lifestyle

continued on p. 2

I have a seventh grader. Need I say more? I am seeing my “baby” hit adolescence with a vengeance. He is desperately trying to find his way in life, and sometimes Mom and Dad are just a big inconvenience. He has had some issues with his hemophilia. His father and I encourage him to be aware and to take care of himself. It is a constant battle. But the new year brings about many changes and new experiences. It is a time to look forward and not back, but that can sure be daunting, especially with children.

In this issue you will read about Washington Days (page 10), an annual Washington, DC, lobbying event hosted by the National Hemophilia Foundation (NHF). It is an incredible experience and I encourage readers to consider participating in the event.

Do you have goals for the new year? Think about “Going Green with Walgreens” (see opposite page). We will explore ways to save the environment while managing a bleeding disorder. You don’t have to change your entire life to be good to the environment. It’s the small things that can make a big difference. If you have any tips, comments or suggestions, we would love to hear from you.

My wish for each of you is to have a healthy, happy and exciting 2009!

—Cazandra Campos-MacDonald Patient Advocate

confident of their performance in schoolwork, were less likely to hit someone and got along better with their families.

Even more encouraging for parents, a research study found that participants in various mentoring programs had higher levels of college enrollment and higher educational aspirations than non-participants receiving comparable amounts of education and job-related services.3

Mentoring could be a key factor for increasing self-esteem and self-reliance through a regular exercise program, yet it is just one way to encourage physical activity and healthy habits. Each parent must choose the system that works best for his or her child and remember that physical fitness improves adolescents’ emotional as well as physical well-being.

References1. Gilbert MS, et al. “Hemophilia: Sports and Exercise.” HANDI. National Hemophilia Foundation: 1996.2. Hemophilia: The Young Adult Years (11 – 18). Your Child’s Hemophilia (series). CSL Behring Choice Support Center. King of Prussia, PA: 2001.3. Cave G, Quint J. “Career Beginnings Impact Evaluation: Findings from a Program for Disadvantaged High School Students.” Manpower Demonstration Research

Corporation. New York, NY: 1990.


Volume 9, Number 1©2009 Walgreen Co. All rights reserved.2

Letter From the Editor

How to Motivate … (continued from p. 1)

Name: Jadd Helma

Position: Midwest regional sales manager

Home City/State: Denver, CO

Years with Walgreens-OptionCare: Eight months

What have you learned from working with the bleeding disorders community? I’ve learned that there are amazing people with bleeding disorders who don’t let their disorder control their lives or define them.

What have you enjoyed the most about working with the bleeding disorders community? Hands down, it was volunteering at Camp Wilderness in Lawson, MO. It was such a great experience. I met some amazing kids as well as other members of the community. The experience was something I will remember forever, and I can’t wait to go back!

If you could go on an all-expense-paid vacation, where would you go and why? Honestly, I would go to Hawaii and bring my grandma. It’s her lifelong goal to visit there, and I would love to be able to take her.

Hobbies: Any sport—football, baseball, skiing, snowboarding

Favorite sports team(s): Denver Broncos, Chicago Cubs, Iowa Hawkeyes and Colorado Buffaloes

When you have free time, what do you do? I like to help coach high school football and help kids. Right now I am a volunteer coach at Thomas Jefferson High School in Denver. I’m passionate about helping kids and seeing them succeed. I also enjoy spending time with my family and friends whenever I get a chance.

What are you reading right now? Quiet Strength by Tony Dungy

What is the best thing about the city you live in? I love the diversity and all of the things to do. I really enjoy skiing and snowboarding, which are only an hour away, as well as having access to all of the professional sporting events.

Employee Spotlight

It seems like everyone is going green—from corporations and governments to celebrities like Julia Roberts, Al Gore and Leonardo DiCaprio. This year, The Infusion Inquirer will focus on going green, specifically how patients and their families can help save the environment while managing a medical condition.

Small Changes When you stop and think about the waste involved with medical supplies, it is staggering. Hospitals in the United States throw away an estimated 2,000 tons of unused, surplus medical supplies every year.1 How are you adding to that? What can you do about it?

Think about your infusion routine. Do you use the butterfly needle that comes with your factor or do you put it in the Sharps® container and use the size you prefer? What if you use a dressing kit with each infusion? Do you use the Tegaderm™ or toss it? What about the tape?

Here are some simple recycling tips to keep in mind when you infuse:

Save the Tegaderm and the extra gauze you do not •use. Even though it isn’t sterile, you can still use the gauze to wipe a cut or scrape with peroxide and use the Tegaderm as covering for an injury. If you don’t use the small roll of tape in your dressing •kits, set it aside for use as a bandage. Save the alcohol swabs that come with your factor. •

What other uses can you find for unused supplies? Please send your comments and tips to [email protected]. Your ideas will help all of us be more environmentally conscientious. Let’s band together to make a difference in our environment.

Reference1. Sarvepalli S. Rush University Medical Center redefines recycling. Chicago Flame.

September 22, 2008.

Volume 9, Number 1©2009 Walgreen Co. All rights reserved. 3

Going Green With Walgreens

College Point, NY–Responsive Service at the Core of Patient Care Whether it’s a snow storm that cripples the city or medication supply problems that could potentially put patients at risk, our Center of Clinical Excellence for Hemophilia at our Trinity Home Care facility in College Point, NY, makes sure patients are properly accommodated. Even the infamous New York City traffic doesn’t faze this staff of 22 nurses, four pharmacists and 40 support personnel.

“Patients with bleeding disorders expect a fast response,” General Manager Monica Persaud says. “Often, we are at a patient’s door within two hours of a request for service. A heck of an accomplishment in New York City traffic!”

Last October, the staff received a call at 4:50 p.m. on a Friday from an Oklahoma Walgreens-OptionCare facility requesting service for a patient who was seven hours from New York City. “We wanted to send the delivery by UPS, but the order details didn’t come in until 9 p.m. that night. On Saturday, we had our driver on his way to the patient who, as it turns out, was having surgery on Monday and needed pre- and post-surgery meds,” Persaud recalls.

The facility works with three of the largest hemophilia treatment centers in the New York City metropolitan area: Mount Sinai Hemophilia Center, Long Island Jewish Hemophilia Center and New York Presbyterian Hemophilia Center.

The staff understands the importance of supporting caregivers as well as patients. “Family members rely on our staff for con-sistent levels of service excellence,” Persaud says. “What often surprises them is our concern for the well-being of the caregiver and patient alike. We understand the

caregiver is a critical component of the treatment process, so we reach out to them by connecting them with resources for support. We take pride in guiding families around obstacles whenever and wherever possible.”



Center of Clinical Excellence Spotlight

Standing (from left to right):Edward Wilbert, Latoya Brereton, Carol Ann Liebold, Jacqueline Anderson, Meghan Podmore, Sarita Crouch, Nafeeza Khan, Paul Gunderson, Min Than, Lolita Persaud, Esther Park, Aneisa Gafoor, John Pavloyianis, Roberta Molino, Sandy Lagrange, Fanny Bonete-Carabajo, Rosa Bonete, Alexandra Mendoza, Iraida Engersbach, Esther Kim, Juanita Pecso, Jessica Bhola, Indira Zubovic Sitting (from left to right):Kalena George, Maria Arrubla, Charles Oh, Pat Dubraj, Lawrence Riley, Colene Singh, Phik Yue Choo, Barbara No, Trevor Armstrong, Shir Bhola

When reconstituting product, why do the instructions tell you to direct the sterile water to the side of the vial? Foaming occurs when the sterile water diluent is injected directly on the factor powder. Therefore, the sterile water should be directed to the side of the factor vial to avoid foaming. Foaming results in a longer reconstitution time. Additionally, foaming can hinder your ability to withdraw all of the factor product from the vial.

How can you tell whether a bleed is a muscle bleed or a soft tissue bleed on a limb like the thigh? A soft tissue bleed occurs when there is bleeding beneath the skin’s surface. The resultant bruise, or hematoma, may be tender to the touch or exhibit a throbbing pain; however, a soft tissue bleed does not generally cause significant pain. Unless bleeding is severe, a soft tissue bleed does not require factor replacement therapy.

Bleeding into a muscle can result in serious complications such as compartment syndrome. Compartment syndrome occurs when swelling or bleeding creates pressure inside the muscle. The pressure causes severe pain and can damage blood vessels and nerve and muscle cells due to the lack of oxygen. A muscle bleed may not be visible (for example, a bruise may not be present). A muscle bleed can be very painful and can decrease a person’s ability to move the affected area. A person experiencing a muscle bleed should infuse factor as ordered by the doctor and rest the affected area until the bleeding subsides.1 For assistance with a clinical question, call Jennifer Maddox, RN, BSN, MHA, at our 24/7 hotline: 866-436-4376.

Reference1. The Hemophilia Handbook, 4th ed. Atlanta, GA: Hemophilia of Georgia, Inc. May 2007.

The Clinician’s Corner

Kudos–Community Education Done WellAt the Nebraska Family Education Weekend in Lincoln last August, Jennifer Maddox, RN, BSN, MHA, the voice on Walgreens-OptionCare’s 24/7 hotline, led a hands-on infusion training session for members of the community. The event, sponsored by the Nebraska Chapter of the NHF, offered education and train-ing sessions for patients and families affected by bleeding disorders. The skill level of the participants ranged from those who had never self-infused to others who just needed a few helpful tips. Several clinicians heard of Jennifer’s success with the infusion training and her caring nature and asked her to provide training at a similar chapter event in Kansas City, MO.

Jennifer Maddox is a regular contributor to The Infusion Inquirer newsletter. Her last article, Venous Access Options, can be found in the July 2008 issue. She also answers questions for Clinician’s Corner.

Jennifer Maddox, RN, RSN, MHA


Imagine this: You are driving to work when all of sudden your nose starts bleeding. It’s not the first time it’s happened, and you know it won’t be the last. You’re not sure why, but you’ve always had these nosebleeds and bruised easily. It was always dismissed with a simple wave of the hand because your grandma, dad and sister have the same issues. What’s wrong? Should you be concerned? Will your kids have the same problem?

These are some of the questions patients with von Willebrand disease (VWD) face day in and day out. VWD is the most common bleeding disorder in the world, with more than one percent of the population affected. However, it is also the easiest to misdiagnose. Unlike hemophilia, where the majority of individuals suffer from the severe form, VWD is the polar opposite, with the majority falling into the mild category of symptoms. VWD also differs from hemophilia in that it occurs in both males and females.

Four of the most common symptoms of VWD are easy bruising, frequent or prolonged nosebleeds, heavy or prolonged menstrual bleeding and prolonged bleeding after surgery, dental work, childbirth or injury.

Because heavy menstrual bleeding is a common sign, obstetricians and gynecologists (OB/GYNs) are in a prime position to help diagnose VWD. Unfortunately, it is frequently misdiagnosed as a gynecologic problem by doctors who are not familiar with the condition. In fact, it is believed that some of the approximately 30,000 women who have hysterectomies performed each year to treat severe bleeding might actually have a bleeding disorder.1 The exact number of unnecessary hysterectomies related to VWD is unknown.



Von Willebrand Disease: Raising Awareness of an Often Misdiagnosed Condition

Project Red Flag – Houston Chapter Helps Shed Light on VWD A small step toward improving OB/GYN awareness of VWD was taken on September 25 in Houston with an educational event co-sponsored by Walgreens-OptionCare and CSL Behring. It was hosted by the Lone Star Chapter of the National Hemophilia Foundation in conjunction with the NHF VWD awareness campaign, Project Red Flag. The dinner event included guest speakers and experts on VWD who helped inform and educate Houston-area OB/GYNs.

Debbie de la Riva, executive director of the Lone Star Chapter and a leading voice in the bleeding disorder community, coordinated the event. “I would like to thank both companies for helping to bridge the gap between women with bleeding disorders and their healthcare practitioners. I hope that this event is the first of many to come from my chapter,” de la Riva said.

The featured speaker was Jennifer Dietrich, MD, assistant professor of Obstetrics and Gynecology and Pediatrics and Fellowship Director of Pediatric and Adolescent Gynecology at Baylor College of Medicine and Texas Children’s Hospital. (See page 8 for more information about Dr. Dietrich.)

Dr. Dietrich has been a vocal proponent for VWD awareness not only among her fellow OB/GYNs but also on a national level serving on the NHF Project Red Flag committee. “Since the first adolescent healthcare visit is recommended to take place between the ages of 13 and 15, it is a perfect opportunity for obstetricians and gynecologists to inquire about menses and identify potential problems early,” she said.

Dr. Dietrich is working with the hemophilia treatment center at Texas Children’s Hospital to open a joint clinic for women with bleeding disorders. Her actions, along with those across the nation who are committed to the goals of Project Red Flag, will help bring a better quality of life to countless women.

For more information about VWD and Project Red Flag, call the NHF at 800-42-HANDI or email [email protected].

Reference1. Von Willebrand information sheet. OBGYN.net. www.obgyn.net/medical.asp?page=/ENGLISH/PUBS/ANNOUNCEMENTS/VWD_Q_A.

Accessed December 16, 2008.


“Since the first adolescent healthcare visit is recommended to take place between the ages of 13 and 15, it is a perfect opportu-nity for obstetricians and gynecologists to inquire about menses and identify poten-tial problems early,” said Dr. Dietrich.

Occasionally, The Infusion Inquirer will present a feature about a physician who supports patients with bleeding disorders. In this issue we introduce Jennifer Dietrich, MD.

During her medical fellowship training, Dr. Dietrich realized she had a specific interest in bleeding disorders. Now she’s a practicing physician and over the past five years about 25 percent of her patients have hemophilia or von Willebrand disease (VWD).

In her field of pediatric and adolescent gynecology, she sees many teenagers with menstrual cycle difficulties so she provides education. She explains the issues, discusses treatment options pertaining to gynecologic health and determines what best fits the patient’s needs.

Dr. Dietrich is active in Houston’s medical community and says, “Soon we hope to have a joint clinic (at Texas Children’s Hospital, Houston) with both gynecologists and hematologists who care for young women with bleeding conditions.”

Dr. Dietrich received her medical degree from the Medical College of Wisconsin in Milwaukee. She practices at Texas Children’s Hospital and also sees patients at St. Luke’s Hospital and Ben Taub General Hospital, all in Houston.

She is a member of the Adolescent Health Care Committee of the American College of Obstetricians and Gynecologists (ACOG) and Project Red Flag (see article on page 6).

Supporting Patients—Dr. Jennifer Dietrich

Jennifer Dietrich, MD

What’s the difference between hemophilia and von Willebrand disease?Hemophilia is a rare, inherited bleeding disorder in which the blood doesn’t clot normally due to lack of clotting factor VIII or factor IX . Von Willebrand disease (VWD) is an inherited bleeding disorder that affects the body’s ability to clot due to a low level of von Willebrand factor, a protein which aids blood to clot. If the blood doesn’t clot, you can have heavy, hard-to-stop bleeding after an injury. VWD is more common and usually milder than hemophilia. VWD affects both males and females while hemophilia mainly affects males. 1

Reference1. National Heart, Lung and Blood Institute. Diseases and Conditions Index. www.nhlbi.nih.gov/health/dci/Browse/Blood.html. Accessed January 14, 2009.




Kids’ KornerKids’ Korner

Konrad Flores is a spunky three-year-old Texan with severe hemophilia A. He was diagnosed when he was a week old, but you would never know he has a bleeding disorder.

Konrad loves playing baseball and can’t get enough time in the swimming pool. He has a creative side and can often be found drawing and coloring while watching his favorite movies. When asked what he wants to be when he grows up, he says, “A super-hero like Spiderman!” Isn’t that what our world needs? Another friendly, neighborhood Spiderman!

His mother, Erica, says that her hope for Konrad is “that he will learn to manage hemophilia and use it to push himself forward rather than set him back,” adding that the disorder should never take center stage. Erica is Konrad’s sole caregiver and has proved to be a quick study in learning to access his port. To date, no infections! Erica says the most difficult part of Konrad’s bleeding disorder is “watching him have a bleed and be uncomfortable.” But she says he takes it all in stride. “He’s a trooper.”

“I believe your child is your child first, then comes the bleeding disorder, never the other way around,” says Erica. “Let them find their limitations. Let them explore and live life to the fullest.”


Shining Star - Konrad Flores


The thought of lobbying politicians on Capitol Hill could intimidate anyone, even the most out-going and adventurous of people. But lobbying is a long-standing tradition of our political system. The term itself is uniquely American; it originated in the 1830s when representatives of various interest groups congregated in the lobbies of Congress and state legislatures.

For patients and families affected by bleeding disorders, the NHF offers an opportunity to effect legislative change with its annual lobbying event known as Washington Days. Living with a bleeding disorder is not exactly commonplace, so education about the medical and financial obstacles facing patients is needed on Capitol Hill.

In March of last year, approximately 250 participants from 41 states took part in the event, which focused on three issues—lifetime insurance caps, Medigap policies and hemophilia treatment center funding. The lobbying efforts paid off. In July, the Health Insurance Coverage Protection Act (HR 6528) was introduced in the House of Representatives. It is identical to Senate bill 2706 introduced by Senator Byron Dorgan (D-ND) in March during Washington Days.

This year’s Washington Days were held February 25-26. For more information about the event or about hemophilia-related legislation, check out the NHF’s Advocacy Center at Hemophilia.org.

Washington Days Effects Change!

Konrad Flores, with a big smile

If you’ve ever wanted to know how your factor is calculated, here’s a basic dosing explanation of factor VIII and IX medications.

Factor is dosed in units per kilogram (kg). Each unit/kg of factor VIII medication increases a patient’s factor level by two percent. Therefore, a person diagnosed with severe hemophilia A, having a factor level less than one percent, will need 50 units/kg of factor VIII medication to increase his level to 100 percent.

Factor IX products increase the level of factor in the blood differently depending on the type of product being infused. Human-derived factor IX products increase the level of factor at a rate of one percent for each unit/kg infused; while with recombinant factor IX products, 1.2 units/kg are required to increase the level by one percent.

Mild hemorrhages are treated by increasing the factor level in the blood by 20-30 percent. Moderate bleeds require an increased factor level of 30-50 percent for effective treatment. Finally, severe bleeds are treated by increasing the factor level by 80-100 percent.


What is the difference between medical and prescription benefit plans? Major medical is the portion of the policy used for any medical problems, e.g., doctor or ER visits, hospi-tal stays, specialists. The prescription plan is used for medication and comes with its own drug card (used separately from your medical card). Insurance without a separate prescription plan can be tricky, as all medi-cation under this type of insurance applies toward the lifetime cap. In any case, if you don’t understand your policy, call your insurance provider or your company’s benefits department and ask for help to avoid any unpleasant surprises.

For more information regarding insurance matters, email Linda Thomas at [email protected].

What Is “MASAC”? In 1954, the NHF formed a board of medical profession-als whose main objective was to promote hemophilia care and research. That board is now known as the Medical and Scientific Advisory Council (MASAC). The professionals who make up the MASAC board meet twice a year to issue quality-of-care recommendations that affect the community, which are then approved by the NHF board. The latest round of recommendations were approved and adopted by the NHF last June and covered the following topics:

MASAC Recommendations Concerning the •Treatment of Hemophilia and Other Bleeding Disorders (Revised April 2008)MASAC Recommendations Regarding Standards •of Service for Pharmacy Providers of Clotting Factor Concentrates for Home Use to Patients With Bleeding Disorders

These recommendations are often helpful guidelines for patients and consumers. The latter recommendation, for instance, establishes minimum standards of service that pharmacy providers must meet when supplying factor for patients’ home use. This document lets you know what level of service you should expect from your home care provider.

For the latest MASAC recommendations, go to Hemophilia.org and click on “Researchers and Healthcare Providers,” or call the NHF’s information line at 800-42-HANDI. Walgreens-OptionCare encour-ages you to check the NHF web site and read through the recommendations. An issue that may not be of importance to you now may be of value in the future.

Odds & Ends

Insurance Matters

How Factor Is Factored

Walgreens-OptionCare is here to help. Call Walgreens-OptionCare Hemophilia Services toll-free at 866-436-4376 for assistance 24/7.

Volume 9, Number 1©2009 Walgreen Co. All rights reserved. HC10089-020912

Editor Cazandra Campos-MacDonald

Designer Rabel Shamuel

Hemophilia Services Office 1410 Heriford Rd. Columbia, MO 65202 866-436-4376 HemophiliaOptions.com

Brand names are the property of their respective owners.

The Infusion Inquirer is a free publication for members of the bleeding disorder community. The opinions expressed are not necessarily those of the Walgreens-OptionCare staff or Walgreen Co. The information or opinions on medical topics in this publica-tion should not be used as a recommendation for treatment nor is it a substitute for medical advice. Any questions regarding medical advice or treatment should be directed to your doctor. Inclusion of resources in The Infusion Inquirer does not imply an endorsement by Walgreen Co. or any of its subsidiaries and affiliates. Although The Infusion Inquirer is intended to be accurate, neither Walgreen Co., its subsidiaries or affiliates, nor any other party assumes liability for loss or damage due to reliance on this material.

Questions, comments, subscription orders and change of address inquiries may be sent to: Walgreens-OptionCare Hemophilia Services Attn: Cazandra Campos-MacDonald 421 S. Slate Deming, NM 88030 866-436-4376 [email protected]

Walgreens-OptionCare Hemophilia Services National Team

Vicki Billups- Oberkrom, LPN Director, Biotherapeutics

Cazandra Campos- MacDonald Patient Advocate

Cheri Graham Purchasing Manager

Priscilla Lanigan, RN Hemophilia Nurse Educator

Jennifer Maddox, RN, BSN, MHA National Care Coordination Manager

Natalie Russo Hemophilia Care Specialist

Linda Thomas Hemophilia Care Manager

Evan Hammett Regional Sales Manager, Ohio Valley

Jadd Helma Regional Sales Manager, Midwest

Lainie Hulse Regional Sales Manager, West

José Iglesias Care Coordination Manager

David Moss Regional Sales Manager, Southwest

Caleb Sellers Director, Business Development

For more about hemophilia services, visit us

on the Web at HemophiliaOptions.com.

Pictured left to right are: Front Row: Jadd Helma, Jennifer Maddox, RN, BSN, MHA; Cazandra Campos-MacDonald; Linda Thomas; Vicki Billups-Oberkrom, LPN; José Iglesias; Tina Dooley, PharmD; Lainie Hulse Back Row: Evan Hammett; Natalie Russo; Caleb Sellers; David Moss; Wayne Richards, MSW, LCSW

Our Support Team

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The Infusion Inquirer - Walgreensaccomplishment in New York City traffic!” Last October, the staff received a call at 4:50 p.m. on a Friday from an Oklahoma Walgreens-OptionCare