This year marked the ninth year of Camp Brave Eagle! It was also the first year with a waiting list to attend! This weeklong camp is for childrenwith bleeding disorders and their siblings. It offers campers community,confidence-building, and physical activity, and leads them towards self-sufficiency. Activities this year included archery, a ropes course, canoeing,swimming and "the big swing." Campers also had an opportunity to learnnew skills like self-infusion. Nearly all campers with a bleeding disorderparticipated in self-infusion training this year. Some siblings even participated in the class. We commend them for their achievement!
On Friday June 20th, 70 campers left Brave Eagle full of memories andpromises to return next summer. McKensie Crabtree was a counselor-in-training this year. She values camp because she matures a little moreeach year she attends. She also enjoys making friends from other towns.When asked what she learned at camp this year as a C-I-T, she tiredlyreplied "Patience!" Her brother Zach also enjoys the new friends he makesat camp. Zach learned self-infusion at camp when he was seven years oldand encourages others to become independent.
Camper Sarah Phillips enjoyed her second year at Brave Eagle this summer.She says the experiences she shares with other campers at Brave Eagle areexciting. Camp has taught to her "look beyond people's appearances" andto get to know their heart and mind. She also learned how to infuse thisyear.
There are many more Brave Eagle stories to be told and more to be writtennext summer! So mark your calendars for June 14-19, 2009, and registerearly!
IHTC Welcomes New Staff ......page 3
Thompson Outpost ................page 4
Be Prepared with ATHNready ......................page 5
Recombinant Technology........page 6
HII Annual Meeting ................page 7
Treatment Adherence..............page 7
HII 2008 Events
December 13HII Holiday Party
December 18December Men's Group Meeting
2009 Men's Group Meetings:January 22February 26March 26
Camp Brave Eagle AwardsEnergy was high during the Friday closing ceremony for Camp Brave Eagle. Campers and their familiessqueezed into the chapel to receive awards and say their goodbyes. Counselors give an award to eachcamper in their cabin, highlighting their unique qualities and talents. Campers' families were invited to watch the award ceremony while campers sat withtheir cabin mates one final time.
Many awards were given this year honoring traits such as leadership, patience, helpfulness, attitude, generosity, maturity, kindness, industriousness andfriendliness. Sarah Phillips received a Special EmpathyAward. The IHTC also gave four annual Camp BraveEagle awards to the following campers:
/ Tony Spickelmier Award This award was given to Kurt Heerema. It is given in memory of Mr. Tony Spickelmier, a leader in thehemophilia community both on the state and nationallevels. The "Tony" award is given to the camper whoexemplifies Mr. Spickelmier's qualities of leadership,responsibility, and spirit of community involvement.
/ Chad Beer AwardThe Chad Beer Award was given to Josh McKinzie. In memory of Chad Beer, the award is given to thecamper who exemplifies courage, perseverance, anindomitable spirit and a "can-do" attitude.
/Billie Andreko AwardThis award was given to Raebecca Hutshell. The award is given in memory of Billie Andreko to a camper demonstrating Billie's inner strength, persistence, humility, and generosity.
/Kayla Duncan Sibling AwardThe Kayla Duncan Award was given to Cole Sullivan. It is given in honor of Kayla Duncan to the camper who displays understanding, support, and encourage-ment for a sibling with a bleeding disorder.
Camp Brave Eagle continued from page 1
June 15 - 20 / 2008
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IHTC Welcomes New Staff
Chirag Amin, M.D.The IHTC was pleased to welcome Dr. Chirag Amin in July 2008 who joinedIHTC as adult hematologist. Dr. Aminattended college at Washington University inSt. Louis and attended medical school at theIndiana University School of Medicine. Hewas a resident at the University of NewMexico and completed his fellowship at theUniversity of North Carolina at Chapel Hill.
Dr. Amin grew up in Rushville, IN. His parents are from Indiaand both are physicians. Dr. Amin considered majoring in law or political science, but found his science classes to be moreinteresting and ultimately chose to follow in his parents' foot-steps and become a physician. Dr. Amin has a passion for thefield of hematology; he enjoys the challenge of working with and thinking about blood disorders. His particular interests arethrombosis and malignant hematology. Dr. Amin has found theIHTC to be full of welcoming colleagues and patients. In his freetime, Dr. Amin enjoys fly fishing, playing tennis, hiking, reading, and watching ESPN.
Melissa LongThe IHTC welcomed Melissa Long, RN, as a phone triage nurse in May 2008. Melissawas born in Beechgrove, IN and grew up inthe Southport area. She later moved out tothe country with her family. Melissa is mar-ried and has no children, but hopes to starta family in the next few years. She attended
school at Ivy Tech to become a RegisteredNurse. After graduating, Melissa worked at Riley Children'sHospital in Hematology/ Oncology for two years and then came to the IHTC. While much of her nursing experience is withchildren, she is comfortable working with patients of any age.Melissa finds the IHTC to be a great place to work with a friend-ly, helpful, and supportive atmosphere. In her free time, Melissaenjoys boating, traveling, and playing tennis.
Elaine MenshouseElaine Menshouse, RN, joined the IHTC inJuly. Elaine is a native to Indiana and grewup in Spiceland, IN with her two siblings.Elaine has a thirteen year old daughter,Jessica. They enjoy playing with their twocats and competing on their Wii game system. Elaine is also an avid reader andenjoys taking walks outside.
Elaine decided to be a nurse when she was seven years old. Fromthe time she was a young girl, she enjoyed taking care of animalsand people. Elaine began learning and preparing to be a nurse asearly as she could. She took health classes, was a student nurseand participated in a health vocation program in high school.
Elaine has a diverse resume of nursing experience. She was apediatric nurse for ten years and worked in the Riley Pediatricintensive care unit for four years. She also has six years of experience working in adult surgery and in a pediatric office.Elaine is always eager to impact the lives of others. She enjoyslearning and is gaining new knowledge at the IHTC. She appreci-ates that the IHTC offers holistic care and doesn't focus on justone part of patients' lives.
Patti RobinsonIn May of this year, Patti Robinson, RN, BSN, joined the IHTC staff as Nurse Manager.She relocated to Indianapolis this spring fromOhio where she grew up with her twin sisterand three other siblings. She lives with herhusband, who is now a professor of ExerciseScience at the University of Indianapolis.Patti has two daughters and one son. Sheenjoys golf, swimming and cycling. She alsoplays the guitar and sings.
Patti hoped to be a nurse from the time she was a young girl. Her grandmother was a nurse and spurred her interest in thefield. Patti has experience in long-term care management andworked at the Toledo Medical Center where she managed theMedicine and Sub Specialty Clinic. Patti is currently working on her masters in nursing. She has a special interest in leadingnurses-inspiring them to develop their specific nursing skills and their leadership abilities as well.
Patti looks forward to her future at IHTC. She feels she is surrounded by individuals who are top in their field. The environment challenges her to explore new ideas and ways tocontinually advance the IHTC's mission.
Megan RussellIHTC was pleased to welcome MeganRussell, MA to the IHTC team in May ofthis year. Megan grew up in the Cicero areawith her parents and two brothers. Hergrandmother was a nurse and Meganenjoyed listening to her experiences fromwork and found them intriguing. Whilecompleting her cosmetology degree, Megandecided to investigate nursing and earned hermedical assistant degree. Before joining IHTC, Megan worked inan OBGYN office and at Urology of Indiana. She would like toreturn to school in the future to pursue her RN. Megan enjoysIHTC because of the variety of research projects in which thecenter is involved. She enjoys participating in research studiesand contributing medical advancements. Megan feels her learn-ing opportunities at the IHTC are endless. She and her husbandSteve have three children. She enjoys listening to country music,scrapbooking and spending time with her family. IHTC is glad to have Megan on the IHTC team!
Long
Robinson
Amin
Menshouse
Russell
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On July 12th, eight young men and fouradults met in the IHTC parking lot. Littledid they know what adventures awaitedthem over the next four days. They knewwhat was planned on the agenda, but noone knew for sure what might happen alongthe way. I was privileged to be a part of thisexcursion.
The trip took us to the breathtaking moun-tains and mighty rivers of West Virginia.The theme for the trip was "making choices"and the group soon found themselves mak-ing more choices than they had expected.Since Thompson Outpost is a leadershipfocused experience, each young man hadthe chance to lead the group for a half day. This role included choosing activities for the group, deciding on meal stops, restroombreaks and planning sightseeing adventures.
We spent the first night in an eastern Ohiostate park. The next day we hiked to ourfirst activity-the zip line. A zip line is a steelcable stretched taut through a tree line orover a steep ravine. We rode the zip linethrough the canopy of trees in the WestVirginia Mountains. Everyone was strappedinto a harness and safety corded three ways,but the ride was still unnerving at first.
On Monday we whitewater rafted down the famous New River-the trip of a lifetime.Half the group was thrown out of the raft at least once. A few went overboard twice!It took endurance, strength, and courage totackle the rapids. We also floated throughswimming rapids and jumped from a highoutcropping cliff into the river.
It was rewarding to see young men formlasting friendships and have the type ofadventure most people may never experi-ence. This year was the last ThompsonOutpost trip for several of the young men,but for others it was the first of manyadventures to come.
Thompson Outpost 2008 by Don Molter
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September was National Preparedness Month and HurricanesGustav and Ike, with wave heights of more than 15 feet, 125mile per hour winds and evacuations up and down the coast, areproviding real life reminders that families need to be prepared incase of an emergency or disaster. This is especially true in thehemophilia community.
As the mother of a son with severe factor VIII hemophilia, I amespecially concerned about the additional challenges that emer-gencies and disasters create. The need to plan is particularlyimportant in order to accommodate our family's unique needs.Disasters such as these hurricanes can disrupt access to care,create uncertainty and leave persons with bleeding disordersunable to get the treatment they need when they need it most.How can we avoid these disruptions and make sure we are pre-pared and ready if we have to seek medical treatment elsewherein the event of an emergency?
The easiest way to begin is to use the resources already availablein the hemophilia community. The National Hemophilia Foun-dation (NHF) recommends patients gather important emer-gency medical information and keep it with them. This is themost important first step to ensure uninterrupted treatment.To help families with this critical piece of planning, a new pro-gram is being rolled out through which Hemophilia TreatmentCenters (HTCs) systematically provide NHF recommendedinformation to patients in a portable form. This program - calledATHNready - focuses specifically on the hemophilia communityand is being led by the American Thrombosis and HemostasisNetwork (ATHN).
ATHN is working in partnership with HTCs to apply lessonslearned from past disasters, such as Hurricanes Katrina andRita. With advice from NHF and members of the ATHNCommunity Liaison Group, including Ray Stanhope, Chair ofthe Board of Directors, NHF; and the Hemophilia Federation ofAmerica (HFA) President, Chad Stevens; members of theCommittee of Ten Thousand (COTT), the National Alliance forThrombosis and Thrombophilia (NATT) and others; ATHNreadywill ensure that medical information is safe and available whereand when we might need it most. A pilot program is underway.
With ATHNready and throughHTCs, patients will be able to:
• Get their core health information on a wallet sized flash drive, something that can be with them at all times and used wherever they are and whenever they need it.• Enjoy comfort and peace of mind knowing that their core health information is secure, backed-up regularly and avail-able when they need it.• Be protected by a virtual safety deposit box with electronic health information so that appropriate care can be provided ina timely manner.
In conjunction with the Centersfor Disease Control and Preven-tion, ATHN has mapped thelocation of all HTCs around thecountry in an interactive formatavailable on the ATHN web site(www.athn.org). Patients dis-placed by a disaster or moving toanother location can quickly andeasily identify a comprehensiveHTC anywhere in the U.S.
ATHN's Partnership withHTCs HTCs across the country are signing up to be a part of ATHN.This means they are part of a special group of centers across the country called ATHN Affiliates. These centers are committedto improving the care of people with bleeding and clotting disorders. Working with ATHN, these centers are collecting,storing and managing patient health data through a securenational database that follows all privacy guidelines. In the database, information that can identify an individual is strippedaway, of course, and replaced with a unique identifier. Doctors,scientists, policy makers and other health care providers will use the information in this database to help them better under-stand bleeding and clotting disorders. The goal is to have healthinformation on every person diagnosed with a bleeding disorderin the United States. The data will be used for the common good and improve the lives of all those managing bleeding/thrombosis disorders.
The database system used by ATHN Affiliates will also make itpossible for HTCs to back up patients' medical information auto-matically. Up-to-date data will be available to support patientcare and treatment wherever a patient is and whenever he orshe needs it in the event of an emergency or disaster.
Through the ATHN database, each patient's health informationwill be combined with data from other patients around thecountry to help ensure health care decisions and policies arebased on complete, standardized information, as opposed topieces of data that must be put together. This data will lead to:
• A better understanding of the issues affecting the health of people with bleeding and clotting disorders,• Increased knowledge of the genetics and natural history of these disorders, • The ability to study clinical outcomes of persons with bleeding and clotting disorders and develop standards of care, • A close watch on FDA approved therapies, and• Increased support and community education.
More and more HTCs recognize that the ATHN Affiliate program is an initiative whose time is now. To date, over 80 HTCs have become ATHN Affiliates - more than double the number of those signed on just a few brief months ago. The strength of ATHN
Be Prepared-Make Sure You’re Ready! by Wanda Foster, RN, MS, CHE
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What is Recombinant technology?The word recombinant is a broad term used to describe theprocess where the building blocks for cells or DNA are recom-bined to become something else. Recombinant technology is used to make many types of medications used today.Vaccines and insulin are often made through this technology.
Why was recombinant technology used for hemophilia?The first Factor VIII (8) and Factor IX (9) concentrates weremade from blood. These concentrates replaced the factor thatwas missing and stopped bleeding, but they were not perfect.The main issue was that viruses present in the blood supplycould be transmitted through these products. The use ofrecombinant technology creates a high quality factor productwith virtually no risk of virus transmission.
How is recombinant factor made?Using a series of "cutting and pasting" processes, the FVIII orFIX gene is added to a host cell. The specific host cell utilizedis able to multiply quickly into more cells. These cells aregrown in a "bioreactor" that provides ideal conditions forgrowth and ensures that the process is free from microorgan-isms. Once the cells have multiplied, the FVIII or FIX is
removed from the fluid in the bioreactor and processed. The final product is identical to human FVIII and FIX.
Why is it important to have recombinant Factor VIII or IX?With this technology, pure protein is made in the laboratoryinstead of being extracted from blood. Recombinant proteinsoffer a high level of high from the viruses that may be present in blood-based factor.
Is there only one recombinant product available?There is one recombinant FIX product available and severalFVIII products. There is not currently a recombinant productto treat Von Willebrand Disease. The infusion product used to treat Von Willebrand Disease is made from human plasma;several methods are taken to assure that viruses that may bepresent are killed. Stimate, often used to treat VWD, is anintranasal medication and not an infusion product.
What if I have additional questions?Recombinant technology is complicated. The staff at IHTC isavailable to answer questions you might have. Please contactJennifer Maahs, PNP, for further information.
Recombinant Technology Review
Be prepared continued from page 5
Affiliate HTCs is not merely in the growing numbers, it's in the breadth and depth of the experience, expertise and data collection the Affiliates bring in support of ATHN's mission - to advance and improve the care of individuals affected bybleeding and thrombotic disorders.
Now is an ideal time to think about and begin to develop personal and family emergency plans. The ATHNready program can be part of your plan and will help to ensure youhave all your medical information ready - where and when you need it.
About ATHNATHN is a non-profit corporation founded in July 2006 inresponse to the following nationally identified needs related tobleeding and clotting disorders:
• Research that links medical interventions with clinical outcomes;• Evidence-based clinical standards;• Standardization and an improved means of collaboration with one national database; and
• Conservation and consolidation of scarce resources.
ATHN carries out its vision by providing stewardship of asecure national database that can be used to support clinicaloutcomes analysis, research, advocacy and public health reporting in the hemostasis and thrombosis community.ATHN's values � improving clinical outcomes and care, facilitat-ing continuity of care, fostering collaboration, maintaining confidentiality and conserving resources through a commoninfrastructure - guide database development.
To learn more about ATHN and ATHN Affiliate HTCs visitwww.athn.org.
About the Author: Wanda Foster, RN, MS, CHE, is the VicePresident/Chief Nurse Executive at McDonough District Hospital inMacomb, IL, and a member of the ATHN Board of Directors. She is alsothe mother of a son with severe factor VIII hemophilia. The ATHNreadyprogram, including this article, is supported in part by CooperativeAgreement Number U27DD000319 from the Centers for Disease Controland Prevention (CDC). Its contents are solely the responsibility of theauthor and do not necessarily represent the official views of CDC.
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On August 23, Hemophilia of Indiana held its annual meeting in Indianapolis. People from around the state and from the National Hemophilia Foundation and Hemophilia Federation ofAmerica attended the meeting. A total of 370 people attended.Presentation topics included nutrition, aging and hemophilia,assertive communication and neuropsychology. The IHTC was one of the meeting sponsors and provided several presentations. If you attended the meeting and have questions, please contact the center at 877-256-8837.
Highlights from the
HII Annual Meeting
One important subject in the clinical management of bleeding disorders is treatment adherence. When a patient has frequent bleeds, slow resolution of bleeds or breakthroughbleeding on prophylaxis, the treatment center wants to understand why these bleeds occur and what can be done toprevent them. In some cases, patients are unable to followtheir treatment recommendations for very understandablereasons. In other cases, patients treat precisely as recommend-ed, but the treatment is not effective. In either case, the treatment center wants to make every effort to ensure thatwe find the best treatment plan for you or your child.
To do that, we first need a consis-tent way to evaluate how patientsmanage their treatment. Treatmentcenters throughout the country and around the world recognize the need for a simple, standardizedquestionnaire that will measureadherence to treatment recommen-dations for bleeding disorders.
In response to this need, the IHTC has been involved in alengthy process of developing treatment adherence surveysfor prophylactic and on-demand treatment programs. It wasour privilege to present the results of this project at the World Federation of Hemophilia (WFH) World Congress inIstanbul, Turkey in June 2008, and at the recent Region V-E Annual Meeting in Angola, IN. This project has been well-received by providers around the world.
Many IHTC patients have agreed to participate in our prophylaxissurvey development. Several more will be asked to complete the on-demand survey. You mayreceive a phone call or beapproached in the clinic about this important project. If you have an interest in participating and have not been contacted, please call Natalie Duncan at 1-877-256-8837 ext. 273.
Evaluating treatment Adherence Learning about the adherence scale
The IHTC presented its project results at the WorldFederation of Hemophilia Congress in Istanbul, Turkey inJune of this year. Pictured are the cascading domes of theSultanahmet Mosque (better known as the "Blue Mosque")in Istanbul.
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8402 Harcourt Road, Suite 500
Indianapolis, IN 46260
Disaster Preparedness - Are you ready?
Disaster Preparedness has become an important subject over the past several years. The topic is helpful because it can teachyou how to plan for all kinds of emergencies, whether they benatural or manmade. The following instructions come from theNational Hemophilia Foundation and are designed to help youcreate an emergency plan and organize the supplies you mayneed in such an event.
The first step to preparedness is to design a family emergencyplan. Be familiar with your work or school's emergency plan andexits. Designate a central meeting place where family memberscan connect if separated. Program your emergency contact intoyour cell phone under "ICE" (In Case of Emergency), so emer-gency responders will know who to call if needed. Practice youremergency plan and go over the details with each family member.
The second step is to create an emergency preparedness kit.Your kit should include items such as water, non-perishable food,childcare and medical supplies, flashlights, batteries, a radio, abattery-operated cell phone charger, clothes, comfortable shoesand a non-electric cooking source such as a camp stove. Create a secure, water proof "Go Bag" with important family documents,
medical records, insurance infor-mation and contact numbers forthe IHTC and your primarycare physician. Be sure tohave a supply of factor andother essential medicationsready to include in this bag. Assigncertain tasks to family members, such as one person to beresponsible for the medical records and knowing where they arelocated.
Communication is critical in an emergency. Before disasterstrikes, provide the IHTC with your out-of-town contact informa-tion so the center will know how to contact you in the event of an emergency. Make sure you have multiple ways to contact family members. If officials tell you to evacuate, evacuate early!Notify the IHTC where you will be and activate the steps youhave practiced in your emergency plan. When the event is over,contact the IHTC to let them know you have returned home.
Further resources are available at:http://www.fema.gov/areyouready/ http://www.hhs.gov/disastershttp://www.athn.org
