THE INDIANA HEMOPHILIA & THROMBOSIS CENTER, INC. our mission

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1 THE INDIANA HEMOPHILIA & THROMBOSIS CENTER, INC. our mission ImpactReport_V23.indd 1 4/18/13 3:36 PM

2 Looking for the best care in Indiana for patients with bleeding & clotting disorders? to the IHTC, Indiana s center of excellence for bleeding and clotting disorders.

3 OUR MISSION The Indiana Hemophilia & Thrombosis Center (IHTC) was created with the vision of developing a health care program to provide the best, most comprehensive care to people who live in Indiana with bleeding or clotting disorders and to their families. What began in 1998 as a concept has become a reality. As one of the largest hemophilia treatment centers in the nation, the IHTC lives its mission to provide patients and their families with the treatment and support they need to thrive. The IHTC is both nationally and internationally renowned for its leadership in bleeding disorder patient care and collaboration, education, research and advocacy. You may not realize the IHTC is Indiana s only federally recognized hemophilia treatment center and the foremost bleeding disorder multidisciplinary evaluation and treatment facility in the state. Excellence is closer than you think. The IHTC uses its resources to invest in the care and support of our patients, their families, the medical community, education and research, making it possible to: Invest our time and knowledge as advisers to colleagues and other medical professionals who treat our patients living with bleeding and clotting disorders. Educate medical professionals who work in the state, national and international hemophilia treatment center arenas. Act as liaisons and advocates for our patients to schools, workplaces and other environments. Extend our reach through special programs like Camp Brave Eagle and Thompson Outpost around the state and world, where we facilitate diagnosis, care and education. Provide a life-course model of care that includes an array of services to support our patients and their families holistically and throughout their lives. We appreciate your interest in the IHTC, and we look forward to sharing with you, how we live our mission, and how we help our patients today and tomorrow to thrive. Sincerely, Amy Shapiro, M.D. Anne Greist, M.D. 1

4 The Best Care Begins at the IHTC Hemophilia and other bleeding disorders impact every aspect of a person s life from physical and emotional health to work, school and family life. Finding a competent and compassionate health care provider is critical. Source of patient care impacts outcomes and quality of life. When patients receive the best comprehensive care from a team of experts who truly understand their disorder, they can live a long, fulfilling and productive life. The best care in Indiana for those with bleeding and clotting disorders begins at the IHTC, where knowledge, experience and dedication are unmatched. When a patient chooses or a provider refers to the IHTC, they can be assured they chose a national and international leader in bleeding disorder patient care. The IHTC goes beyond medical care to provide emotional and social support, patient education, advocacy, research, provider education and collaboration. In choosing the IHTC, patients not only receive the best care, they support improved treatment and access to care for all individuals with bleeding disorders throughout the state. The IHTC remains a faithful, consistent care provider throughout the course of a patient s life. Our multidisciplinary team commits to treating the whole person regardless of their ability to pay or their insurance status. This commitment covers a broad range of services from developing a medical care plan or providing emotional support, to obtaining genetic testing for a patient s family or educating a family s local care providers about their blood disorder. Regardless of which IHTC services are used, the goal remains the same to improve the quality of care and life for patients and their families. Who We Serve The IHTC serves patients of all ages and backgrounds who live with hemophilia or other bleeding or clotting disorders in Indiana. With a comprehensive support team that covers all aspects of pediatric and adult hematology, the IHTC makes it possible for patients to grow within the center under the care of experts who personally know them and the unique challenges they face. The IHTC s scope of service includes not just the patients themselves. The center also serves patients families, offering support, counseling and education. Additionally, education and consultation extends to the IHTC s colleagues and other medical professionals who collaborate in the care of individuals who live with bleeding and clotting disorders. * Patient Demographics Bleeding 2,141 Clotting 2,126 Other 1,022 Sickle Cell 274 5, Visits Outpatient 10,461 Inpatient 5,339 * All the numbers in this report are based on 2012 data, unless noted. 2

5 Our History The IHTC was established in 1998 by Amy D. Shapiro, M.D. and Anne Greist, M.D. Drs. Shapiro and Greist shared a vision to create a center of excellence in Indiana where those who live with bleeding and clotting disorders could find the highest quality comprehensive health care. Patient Advisory Board Who better to provide feedback on patient services and programs than patients and their families? Established more than 10 years ago, the IHTC s Patient Advisory Board (PAB) is comprised of 18 members who are either a patient, or the parent, grandparent, spouse or caregiver of an IHTC patient. The board represents a diverse sampling of the IHTC s bleeding disorders population, varying in age, ethnicity, location within Indiana, socioeconomic status and bleeding disorder. Representing hemophilia, hemophilia carriers, and Von Willebrand disease, the board also has members from diverse populations in the state, such as the Amish community. The PAB meets at least four times annually, providing feedback to improve IHTC services and patient satisfaction. The board helps identify the need for expanded or new services, directs the future of key programs, and provides constructive feedback regarding new efforts. PAB members contribute towards building a strong, united bleeding disorder community through their participation in the board and community events. Board members also represent the IHTC at local and national meetings Patient Satisfaction Survey Results focused on quality of care & knowledge/skills: 99.3 % of p a ti e n t s rated the IHTC s overall quality of care as good to excellent 99.4 % of p a ti e n t s rated the IHTC staff s knowledge and skill as good to excellent Patient Satisfaction Survey Feedback is solicited from IHTC patients via the Patient Satisfaction Survey. This survey is conducted confidentially by a third party; those randomly selected are asked for feedback on the IHTC s level of service and quality of care. In the 2012 Patient Satisfaction Survey, 99.3% of patients rated the IHTC s overall quality of care as good to excellent. Feedback from the 2012 survey is included in this report for multidisciplinary staff; you will find this data in each respective by the numbers section. 98 % of p a ti e n t s rated the IHTC staff s overall teamwork as good to excellent 3

6 Nathan s Story Growing with the IHTC Nathan is an active young boy who enjoys swimming and making his mother laugh. He was diagnosed with hemophilia at five years of age, after a hemorrhage following a tonsillectomy revealed a mild form of the disorder. At that time his family knew the diagnosis, but they had little information or training. When Nathan s family moved to Indiana, they connected with the IHTC. Nathan s mother describes their first appointment as eyeopening; at that visit they realized how little they actually knew about hemophilia. IHTC staff spent several hours with the family that day, getting to know their unique story and providing education about the disorder, its treatment and protocols. In addition to educating the family, the center also provided education to Nathan s school, equipping 1009-ImpactReport_V23.indd 4 teachers and staff to become a part of his care team. It gives me peace of mind to know we have people so close who can take care of Nathan if something happens, Nathan s mother says. The center has armed us with knowledge. Following its life-course model of care, the IHTC will continue to support Nathan as he develops and changes throughout his life. This opportunity to serve Nathan and his family is a privilege IHTC providers enthusiastically embrace. Dr. Sweta Gupta, pediatric hematologist, looks forward to seeing Nathan when he visits the center. Nathan is always full of energy, she says. When he comes into the clinic, he lights up the whole place. He always has a smile on his face. 4/18/13 3:37 PM

7 Multidisciplinary Care for a Person s Lifespan Research has proven that comprehensive care through a federally recognized hemophilia treatment center helps patients live longer, healthier lives with fewer health complications. The IHTC s multidisciplinary team of experts work together to treat the whole patient throughout the course of his or her life, providing a continuity of care that is unequaled in Indiana. The multidisciplinary team of experts includes hematology, a wide range of nursing services, social work, physical therapy, nutritional and dental services, genetic counseling, career counseling and educational support, research, education and advocacy. The IHTC s clinical and multidisciplinary team has more than 600 years of combined experience in the bleeding and clotting disorders arena. Bleeding disorder patients have access to the multidisciplinary team members every day. They are also provided a free, annual comprehensive clinic visit with the entire multidisciplinary team. One month following their visit, each patient, and their designated physician, are sent a comprehensive report summarizing their medical history and treatment or lifestyle recommendations from each multidisciplinary team member. As a key health care tool, the report empowers patients to discuss their bleeding disorder and treatment recommendations with all their health care providers. Caring for the whole person includes not only the different aspects of an individual s life, but also his or her distinct life stages. The IHTC provides exceptional care for both pediatric and adult patients and has developed the 18 Steps to 18 program to prepare and transition children to adult health care. This is another way the IHTC s life-course model assures patients receive the best ongoing care. Medical The IHTC s expert physician team includes 5 pediatric hematologists, 4 adult hematologists and one hospitalist. These physicians provide diagnostic services, create and implement treatment interventions, provide inpatient consultations and care management, facilitate surgical and procedural planning, provide long-term follow-up and ongoing care, and make referrals as needed. An IHTC physician leads each patient s care team and works in collaboration with the multidisciplinary team, and clinic and triage nursing staff. This ensures seamless communication between all care providers at the center. The IHTC s pediatric team maintains daily communication with adult providers and is available at all times should an adult provider desire to discuss an individual s medical history. This integration of pediatric and adult health care assists in delivering the IHTC s unique life-course model of care. This model positively impacts a patient s health trajectory, or long-term health status, in a manner that other models cannot match. An additional benefit of this integration is the ease of transition for adolescents from pediatric to adult health care providers. 5

8 Multidisciplinary team members serve both pediatric and adult patients and thus remain consistent throughout a patient s life. A patient s primary IHTC physician and triage nursing staff change when they transition to adult care; however, all providers are onsite and pediatric and adult staff meet regularly to discuss patient care. The detailed medical history of each patient is also reviewed with adult providers prior to their transition. To further ensure a patient s continuity of care, the IHTC developed a transition program, 18 Steps to 18, which beginning at age 12, identifies key tasks for an adolescent to master prior to achieving independence. Mastering the 18 Steps ensures a child is adequately prepared to take ownership of his or her health care and transition to adult health care providers at the IHTC. Category Adult Pediatric Bleeding 1, ,141 Clotting 1, ,126 Other ,022 Sickle Cell ,436 1,127 5,563 % Patients Reported Quality of Doctor s 99 Care to be Good to Excellent THE FOLLOWING SERVICES ARE PROVIDED WITHOUT CHARGE TO BLEEDING DISORDER PATIENTS: 6 Education & Advocacy The IHTC is recognized for its leadership in education at the local, state, national and international levels. Education is critical to assure providers are adequately equipped to care for blood disorder patients, empower patients to manage their condition, and secure the best outcomes and highest quality of life for patients and their families. Education is provided by IHTC physicians, nurses and multidisciplinary staff who are all expert in their unique health care role. The IHTC s robust website offers three portals with blood disorder education tailored to patients, medical professionals and payors. Print and electronic material for patients and providers is also available for a variety of blood disorders. The IHTC produces two bi-annual newsletters, one for bleeding disorder patients and one for providers. These newsletters reach more than 1,100 families and 7,000 care providers throughout Indiana. At the individual level, IHTC clinical staff provide in-depth, comprehensive disease-specific education for patients and their families, including hemophilia, Von Willebrand disease, sickle cell or thrombosis. Families are given hands-on instruction such as infusion training and, when needed, education occurs in the patient s home. The IHTC also provides education for a patient s community such as their school, daycare, workplace or health care provider outside the IHTC. At the state level, the IHTC created the Thrive campaign to raise awareness of hemophilia through patient stories shared online, in print, on TV and radio throughout Indiana during the month of March The public was directed to the seehowithrive.org site to learn about bleeding disorders and how with the right services, patients can live active and fulfilling lives. Educating providers who care for persons with blood disorders is one of the IHTC s primary objectives, as improved knowledge enhances care. This is delivered in a variety of settings within a practice, in grand rounds, online, or at local, regional, state and national meetings. A wide selection of topics related to blood disorders is available and ranges from hemophilia complications in aging and inhibitors of coagulation to pain management and rare bleeding disorders.

9 To further enhance care for persons with bleeding disorders, the IHTC created the Partners in Bleeding Disorders Education Program in Partners is the premier education program for HTC professionals throughout the United States, the longest-running national education program for HTCs and the only program endorsed by the National Hemophilia Foundation s Medical & Scientific Advisory Council (MASAC). The IHTC delivers this free, comprehensive, broad-based education through a variety of Partners programs the Basic program, Advanced I & II tracks, the PartnersPRN online learning system and the Presentation Skills Workshop. Each program promotes excellence in care through education, strengthening the knowledge and skills of HTC physicians, nurses and multidisciplinary team members. The IHTC is also an advocate for its patients at the individual, local, state and national levels. Individually, the IHTC advocates for patients encountering barriers to care with their employers, schools and communities. Many large employers offer health insurance benefits that may not include access to the IHTC or its pharmacy program. IHTC staff work on behalf of and in partnership with patients to ensure that their health insurance plans offer access to a federally recognized hemophilia treatment center and pharmacy program. At the state level, the IHTC collaborates with Hemophilia of Indiana, Inc. (HoII), Indiana s patient advocacy organization, to ensure that lawmakers are aware of how certain policies impact the bleeding disorder community. In 2008, the IHTC and HoII advocated on issues relating to bleeding disorder patients admitted to the hospital and covered under Indiana Medicaid. Subsequent successful efforts positively impacted Medicaid reimbursement for inpatient clotting factor use. At the national level, the IHTC collaborates with the National Hemophilia Foundation (NHF) and the Hemophilia Alliance to ensure that Senators and Representatives in Congress are cognizant of the bleeding disorder community s needs. The IHTC staff accompany patients to NHF s annual Washington Days event to speak with members of Congress about policies critical to the bleeding disorders community. Such policies have recently included lifetime caps and pre-existing condition exclusions on private health insurance and the urgent need to remove these, in addition to the ongoing need for continued funding for the Hemophilia Treatment Center network. 1 million + 5,276 Web Impressions from Thrive Media Campaign Clinicians Educated via Conference Presentations or Grand Rounds 55 External Education Sessions 46 Stimate Education Sessions 33 Home Infusion Training Sessions Nursing Services The IHTC s expert nursing team includes two nurse practitioners, five pediatric phone triage nurses, five clinic nurses and three adult triage and outpatient management nurses, in addition to five outreach nurses based in key communities throughout the state. This comprehensive nursing team is essential for bleeding disorder patients who often have complex histories and treatment plans and require specialized care coordination. Each nurse acts as a liaison between patient and physician, quickly determining the type of care or intervention a patient needs in a given situation, either in person, by phone or during a home visit. Collaborating with local clinics and outreach nurses enables rapid response to acute issues, provides remote access to the IHTC s EMR for bleeding disorder patients, and improves access to care for those with financial or transportation barriers. 7

10 The services provided by this team are extensive and include direct patient care, triage of injury and acute bleeding episodes, bleeding assessments for nosebleeds, bleeding and surgery follow-up, INR monitoring, follow-up regarding laboratory results, procedure coordination, pain management, pregnancy planning and delivery coordination, cord blood testing and assessment of at-risk newborns, home visits and assessments, disorder specific patient and family education, Stimate testing, home infusion training, infusion log education and assistance, assessment of treatment plan adherence, wellness counseling, medication administration and education, prescription requests, coordination of care with local care providers and hospitals and referrals to outside providers. The role of an IHTC nurse extends beyond typical triage duties to include specialized services requiring a high level of knowledge. An IHTC nurse will perform a newborn assessment over the telephone and utilizing a cord-blood test kit within a matter of hours acquire laboratory results confirming if an infant is affected with hemophilia. An IHTC nurse may perform a pharmacokinetic study to evaluate factor usage and optimize dosing. Immune Tolerance Therapy is closely monitored by an IHTC nurse who is able to perform rapid dose adjustments, leading to successful tolerization of patients with an inhibitor. The IHTC surgery database, which ensures patients receive optimal hemostasis at the time of a procedure, is also maintained by an IHTC nurse. An important member of the nursing team is the IHTC risk reduction specialist. This specialized nurse educates patients about the potential risks for infection with hepatitis, HIV or other infectious diseases. A number of patients with hemophilia also have hepatitis or HIV co-infection; these patients are educated in how to prevent transmission to others and best manage their care. Patients with a chronic, infectious disease require complex care plans; therefore, the risk reduction specialist closely coordinates ongoing care, radiologic studies, anti-viral treatment and communication with hepatology and infectious disease specialists. Monitoring immunization status is a key component of the risk reduction specialist s role. This nurse tracks the vaccination status of all bleeding disorder patients to ensure each is current in his or her recommended immunizations and that the importance of different immunizations is understood. The IHTC provides many immunizations for free; all patients have access to these, regardless of insurance status. The risk reduction specialist also tracks adverse events experienced by patients and reports them to the FDA or the appropriate agency. 10,554 INR Management Encounters 9,194 Calls Received & Triaged 884 Home Visits 1, Procedures Coordinated & Tracked in the Surgery Database Procedures Coordinated & Tracked in 2012 in the Surgery Database 702 Vaccines Administered 401 Education Sessions 312 Immune Tolerance Encounters 217 Bleeding Assessments 133 Infusion Log Assistance 13 Nosebleed Assessments 97 % Patients Reported Quality of Nurse Triage Services to be Good to Excellent 99 Patients Reported Quality of Risk % Reduction Nurse Services to be Good to Excellent 8

11 Social Work Persons with bleeding disorders experience unique challenges related to their chronic disorder, in addition to normal life stressors experienced by all. Both adults and children may experience anxiety or depression due to a combination of issues. Specific sources of stress can include the financial burden of costly treatment and factor products, restrictions or disability related to a person s bleeding disorder, and socioeconomic barriers to care and services. The IHTC has three full-time social workers on staff to assist patients with these challenges. These social workers routinely evaluate the needs of patients and their families to ensure proactive assistance and intervention. The IHTC social workers provide practical emotional support in the form of crisis intervention, individual and family counseling, referrals for mental health, and home visit assessments. Patients receive assistance in addressing a variety of personal and family situations such as child behavioral issues and custodial conflicts. IHTC social workers are expert navigators of insurance and social service realms, enabling them to advocate for and coordinate medical coverage for patients, including reapplication for coverage, acquisition of new coverage, assistance with FMLA, disability, Medicaid and Medicare, ICHIA, CHIP and private insurance carriers. Acquiring insurance coverage and access to relevant services is an IHTC goal for every bleeding disorder patient. IHTC social workers connect patients with appropriate community resources, such as local food pantries, community centers, support groups, state and federal programs, or resources for financial, transportation or utility bill assistance. In addition, social workers act as liaisons to the local chapter of the National Hemophilia Foundation, Hemophilia of Indiana Inc. 2,534 Social Work Services Provided 1,528 FFSA/Insurance Assistance (Medicaid, disability, food stamps, private insurance) 716 Resource Referrals 291 Counseling Services (sessions & referrals) % Patients Reported Quality of Social 98 Work Services to be Good to Excellent Physical Therapy Bleeding disorders have the potential to significantly affect muscles and joints and negatively impact quality of life. Joint bleeds may permanently alter the structure of a joint and lead to disability over time. The IHTC has two physical therapists on staff who are available every day to assist patients with these complications and to help them achieve their highest level of physical functioning. These therapists assist bleeding disorder patients in recovery from injury, surgery and bleeding episodes by providing physical therapy evaluations and individually tailored strengthening, flexibility and rehabilitation programs. Individually tailored exercise and weight-loss programs are also available in collaboration with the IHTC dietitian to optimize joint health and to reduce joint stress. Exercise and activity modifications for persons with chronic joint arthropathy are provided in addition to counseling on recreational and athletic activities to evaluate and reduce the risk of injury and bleeding episodes. 9

12 The IHTC physical therapists assist patients in navigating any phase of orthopedic treatment, which includes attending orthopedic appointments to facilitate provider-to-provider and patient communication. The IHTC physical therapists perform in-hospital and post-operative evaluation, coordinate radiologic studies, specialist referrals and rehabilitation in the hospital or local community. Consultation for hospital therapists for management of persons with hemophilia following surgery is also provided on an ongoing basis. The IHTC physical therapists facilitate the acquisition of medical equipment and assistive devices such as crutches, canes, wheelchairs and supportive equipment including splints, braces and cryocuffs. A patient s home may be included in an evaluation for safety and mobility. 389 Equipment & Supportive Devices Provided 337 Non-Comprehensive Clinic Visits 245 Orthopedic Navigation Services 35 Orthopedic Procedures Coordinated 33 Medical Equipment Acquisition Coordinated % Patients Reported Quality of Physical 100 Therapy to be Good to Excellent Nutritional Services Today s health crises of obesity and cardiovascular disease affect bleeding disorder patients in aspects beyond the general population. Being overweight places additional stress on joints and contributes to joint bleeding and reduced range of motion. Additional weight also increases the units of factor concentrate used for therapy, resulting in increased treatment costs. To help reduce the frequency and cost of treatment, and to help pediatric and adult patients achieve optimal health, the IHTC dietitian provides nutritional counseling and evaluation of patient specific nutritional status and diet. The dietitian also monitors lipid panels and assesses a patient s cardiometabolic disease risk based on Framingham/Reynolds risk score and family history. Pediatric patients are additionally monitored for growth and development and deviations are addressed with IHTC physicians, parents and primary health providers. Ongoing follow-up for weight management is provided, including home visits and support for outside weight loss programs where applicable. For patients with a Body Mass Index classified as overweight or obese, the IHTC dietitian collaborates with statewide weight management and exercise programs. The IHTC dietitian also collaborates with the physical therapists for weight loss and management and with the social workers to address identified barriers to adequate nutrition, such as for the provision of food stamps. Nutritional education and diet plans are provided for bleeding disorder patients with food allergies, gastrointestinal disorders, intestinal failure requiring enteral feeding, and chronic conditions such as elevated cholesterol, diabetes, hypertension or HIV. The IHTC dietitian educates patients about vitamin and mineral supplements, how these may impact their bleeding disorder, and potential interactions between food and herbal remedies and medications. The IHTC dietitian serves as a liaison to the National Hemophilia Foundation for nutrition and wellness programs and provides critical nutrition updates to IHTC staff. 10

13 148 Weight Management Counseling Sessions 85 Patient Education Sessions & Follow-Up Provided 77 Nutritional Counseling Sessions 46 Lipid/Metabolic Testing & Consultation Sessions 31 Cardiovascular Risk Assessments Performed % Patients Reported Quality of Dietitian 99 Services to be Good to Excellent Dental Services Bleeding disorders complicate dental care, causing some patients to delay dental treatment. The cost of care can also be an obstacle. The IHTC dental hygienists strive to identify the dental care needs of each patient and develop a detailed individualized care plan, including routine dental care, restorations, root canal therapy and extraction. The hygienists also triage patient phone calls regarding dental issues and make referrals as needed. When a dental procedure or surgery is required, the dental hygienists collaborate with providers to create a detailed care plan, including pre- and post-operative treatment to maintain optimal hemostasis and prevent bleeding complications. The IHTC dental hygienists provide bleeding disorder specific dental education to patients, families and community dental providers. Education includes instruction on healthy oral hygiene, cavity prevention, treatment of gingivitis and gingival bleeding, the importance of fluoride, and treatment protocols requiring factor concentrate, Stimate or antifibrinolytics in conjunction with dental treatment. Patient and provider education is critical to remove barriers of fear related to dental treatment. Patients with hepatitis or HIV co-infection are additionally educated on the relationship between dental hygiene and opportunistic infections. Patients using well water are provided kits to test the fluoride level of their water. Results are reviewed by the dental hygienist and when needed, fluoride supplements are prescribed. At every comprehensive clinic visit, the hygienists provide each patient with a free toothbrush, toothpaste, floss and fluoride rinse or gel. The IHTC extends dental services across the state by providing ongoing support to the Delta Dental Program, which was created to provide dental insurance for patients and families with bleeding disorders. The dental hygienists collaborate with the Amish Community Dental Clinic, begun by the IHTC in 1999, to extend dental care to the underserved Amish communities in northern Indiana. The clinic overcomes the logistical barriers faced by the Amish a lack of access to dental care, a lack of dental education, the cost of preventative and restorative care, poor hygiene practices and non-fluoridated water. The clinic has 11 dental chairs, a pediatric and a general dentist. The IHTC dental hygienists provide coordination of factor concentrate needs for the clinic. 1,440 Free Toothbrushes Provided 352 Consultations Provided to MDs or DDSs 223 Pre- and Post-Procedure Planning & Follow-Up 112 Patient Education Sessions 57 Assistance with Dental Insurance % Patients Reported Quality of Dental 99 Services to be Good to Excellent 11

14 Genetic Services The IHTC has been a leader in genetic testing and counseling since Both are critical services for bleeding disorder patients, as having available genetic profiles allows accurate identification of carriers or potentially affected infants or family members at risk for a serious bleeding episode. Genetic profiles also enable the IHTC to provide improved care for a family, tailor medical services and utilize mutation analysis to help predict the likelihood of inhibitor development in a specific patient. The IHTC genetic counselor provides counseling and facilitates genetic testing for hemophilia, Von Willebrand Disease, PAI-1 Deficiency, rare bleeding disorders, thrombosis, thrombocytopenia and congenital anemia. Patients and their families are educated on the inheritance patterns of their disorder. Genetic family trees with identified alterations are maintained for bleeding disorder patients, and individuals are provided with a summary of genetic information when testing is complete. The IHTC genetic counselor also maintains the IHTC Genetic Registry, which has genetic information for more than 24,000 individuals with bleeding disorders. Hemophilia carrier testing is essential to identify female family members who may experience bleeding symptoms or bleeding complications with surgery or childbirth. Carrier testing is also necessary to prevent bleeding in a newborn that may be affected with hemophilia. When a woman is identified as a carrier, the IHTC genetic counselor provides family planning services, which can include prenatal diagnosis as desired. If a carrier is pregnant, a delivery plan will be created; this includes modified delivery guidelines for a potentially affected infant to help prevent intracranial hemorrhage during birth. The mother will be given a cord blood test kit to determine if her infant is affected with hemophilia immediately following delivery, in addition to letters and treatment protocols for the infant if found to be affected. To overcome transportation obstacles and to reach carriers in the Amish population, carrier testing is provided at outreach and special clinics. Financial barriers to testing have also been removed as carrier testing is provided through many research studies. There are currently 4 studies providing free genetic testing or carrier testing for bleeding disorder patients. 24, Bleeding Disorder Patients Included in the IHTC Genetic Registry Hemophilia Patients Genetically Tested (via research or in clinic) Hemophilia Patients Genetically Tested Without Charge via Studies Von Willebrand Disease Patients Tested Without Charge via Studies 63 Genetic Counseling Sessions Number of Research Studies Offering Genetic Testing Without Charge % Patients Reported Quality of Genetic Counseling Services to be Good to Excellent Career Services The IHTC career counselors play a critical role to assist children and adults with bleeding disorders in achieving educational, career and personal goals. Bleeding disorders may impact a patient or parent s ability to attend school or work due to bleeding episodes or disability. The IHTC has two full-time career counselors on staff to advocate for patients in the school and workplace. In the school, advocating includes meeting with teachers or administrators to provide education about a bleeding disorder or to develop an Individual Education Plan or Section 504 modification as needed. These services are also available for students at the college level, in addition to liaising with a college or university s disability office. The career counselors provide 12

15 school visits to ensure an optimal learning environment is maintained. Bleeding disorder patients can have behavioral or developmental complications and the career counselor coordinates evaluation by neuropsychology as appropriate. Students also receive assistance in acquiring a tutor and, for post-secondary education, assistance in choosing a college and identifying and applying for scholarships and financial aid. For those patients transitioning from childhood to adulthood, the IHTC career counselor created in collaboration with Hemophilia of Indiana, the CEO Program (Career, Education, Opportunity). This program helps teens develop educational and career goals and equips them for adult tasks, such as creating a budget, choosing a job and evaluating health coverage. The career counselors introduce teens to the National Hemophilia Foundation and connect them to the local and national bleeding disorder communities; an IHTC career counselor facilitates the monthly men s group with Hemophilia of Indiana. The career counselors assist adults in setting educational and career goals and in identifying potential careers; this may include a personality inventory assessment. Patients eligible for vocational rehabilitation are shepherded through the application process and accompanied to meetings by an IHTC career counselor. Assistance with return to school, application for a business loan or preparation for an interview are also career services Student Advocacy (including academic, financial aid, IEP, 504 and school communication) Career Advocacy (including career and vocational rehabilitation) % Patients Reported Quality of Career Counseling Services to be Good to Excellent Obstetric Management The IHTC offers a variety of support services during pregnancy and delivery for hemophilia carriers, women at risk to be a carrier and women with Von Willebrand disease or other bleeding disorders. The effort to ensure a safe delivery begins with education and carrier testing. If a woman is at-risk to be a carrier of hemophilia or another bleeding disorder, genetic testing is arranged by the IHTC. Whenever possible, genetic testing without charge through available studies is offered. If a woman is identified as a carrier, she receives coordinated family planning services from the IHTC genetic counselor. This includes education regarding the available options for prenatal diagnosis and other reproductive options as requested. A delivery plan is created for pregnant carriers. This plan includes pre- and post-delivery treatment for the mother and modified delivery protocols to help prevent intracranial hemorrhage in a potentially affected infant. The delivery care plan is reviewed with the local obstetrician by an IHTC nurse and additional education is provided. Assurance of available appropriate clotting factor concentrate is made through the hospital or pharmacy for the mother and infant. A cord blood test kit is also provided to determine if a male infant is affected with hemophilia. The IHTC coordinates rapid testing so results are available within 24 hours. 219 Hemophilia Carriers Tested Without Charge via Research Studies 44 Pregnancy & Deliveries Coordinated 13 Cord Blood Test Kits Distributed 13

16 Research The IHTC is an international leader in research with 43 active studies currently available to eligible patients. The IHTC s research staff includes 4 research coordinators and one assistant. As an international leader in hemophilia research, the IHTC performed first-in-human-infusions in the world in 4 different hemophilia studies. Research directly benefits patients by bringing improved therapies to market and allowing patients an opportunity to contribute to advancing care and treatment for others. These studies may also provide patients and payors substantial savings in treatment costs as genetic testing and treatment products are often provided for free. Study types include pharmaceutical, investigator initiated, quality-of-life analyses and studies with national funding such as the CDC and NIH. Studies are available for a variety of blood disorders including hemophilia, Von Willebrand disease, sickle cell disease, thrombosis and others. The IHTC research coordinators connect patients to applicable studies and provide ongoing follow-up and coordination for the duration of the study for those who enroll. As part of its commitment to research, the IHTC has established a biorepository. The IHTC biorepository is a collection of biological samples, such as plasma and DNA, voluntarily provided by patients and their family members. These de-identified samples will be used to assist in advancing the management and outcomes of bleeding and clotting disorders. 43 Ongoing Research Studies 3.9 million 2.7 million Research Study Clotting Factor Concentrate Units Dispensed Through Clinical Trials Clotting Factor Concentrate Units Saved for Payors Through Participation in Research Protocols According to a study by the Centers for Disease Control (CDC), patients who receive care from a federal hemophilia treatment center (HTC) were 40% less likely to die of hemophilia-related complications 1 and to be hospitalized for a bleed 2, compared to those who receive care at a non-htc facility. 1 Soucie, J., Nuss, R., Evatt, B., Abdelhak, A., Cowan L, Hill H, and the Hemophilia Surveillance System Project Investigators. (2000). Mortality among males with hemophilia: relations with source of medical care. Blood, 96, Soucie, J., Symons, J., Evatt, B., Brettler, D., Huszti, H., Linden, J., and the Hemophilia Surveillance System Project Investigators. (2001). Home-based factor infusion therapy and hospitalization for bleeding complications among males with hemophilia. Haemophilia, 7, , Patients Participating in Active Studies During 2012 Patients Newly Enrolled in Active Research Studies During

17 Josh s Story Changing the Course of a Life Most weekdays, lunchtime guests at a local restaurant are greeted by Josh, who works as a host. When Josh isn t working, he enjoys swimming and participating in his church s softball league. When he was 7 months old, Josh s physician was concerned about increased bruising. Laboratory results revealed Josh had hemophilia. Learning to care for an infant with hemophilia was a daunting task, but only the first of numerous challenges for Josh s parents, who had no family history of a bleeding disorder. Several months after diagnosis, Josh experienced an intracranial hemorrhage. A second hemorrhage occurring shortly after his first birthday resulted in paralysis of his left side. Although a challenging limitation, Josh s 1009-ImpactReport_V23.indd 15 parents cultivated strength and perseverance in their son. Since his first visit to the IHTC, Josh and his parents travel two hours to visit the center at least twice a year. The IHTC makes every effort to lessen the impact of hemophilia on Josh s life, which includes providing home visits to decrease the travel and financial burdens on his family. The IHTC staff communicates regularly with Josh between his trips to the center. They re great, says Josh. They ve gone above and beyond for me. Josh believes the care he receives from the IHTC is the best available. If I have a major bleed, facilities near here wouldn t know how to take care of me, Josh says. I guess you could say the IHTC basically saved me. 4/18/13 3:37 PM

18 Equalizing Care Across Distance and Diversity The IHTC has developed a national model of care utilizing outreach to overcome barriers of distance and diversity. Although based in Indianapolis, IHTC programs and services are extended to and reach the entire state of Indiana. Recognizing certain communities as medically underserved and likely to face obstacles to travel, the IHTC has local staff to coordinate care for patients in their communities. For patients, these local IHTC outreach nurses provide local expert care, thereby reducing or eliminating both the cost and time often required to access IHTC care. This exceptional model of outreach equalizes care across diverse communities. In addition to IHTC nurses embedded locally, the IHTC multidisciplinary staff travel to key communities around the state to provide comprehensive outreach clinics for bleeding disorder patients. The IHTC has developed a Patient Portal, which provides patients with 24 hour online access to their health record and facilitates communication with care providers, prescription refills and appointment scheduling. Comprehensive Outreach Clinics In addition to establishing a network of local nurses, the IHTC multidisciplinary staff travel to key communities in the state to provide comprehensive outreach clinics for bleeding disorder patients. Each year these clinics are conducted in Evansville, Middlebury, Berne, Merrillville, South Bend and Fort Wayne. These free one- and twoday clinics provide access to all the IHTC s multidisciplinary services hematology, nursing, physical therapy, nutrition and dental services, genetic counseling, social work services, career counseling and research. In addition to providing routine comprehensive care for bleeding disorders, several of these clinics concentrate on a specific patient population or disorder, such as Indiana Amish communities or communities that share a rare disorder. Outreach clinics are also culturallysensitive, providing IHTC services in a format that is respectful of a community s unique values. 26% 117 Of IHTC Patients Served Through Comprehensive Clinic Outreach Patients Provided Free Comprehensive Evaluations in 5 Outreach Clinics in 2012 Home Visits In addition to bringing comprehensive clinics to a patient s community, the IHTC staff make home visits throughout the state. The entire multidisciplinary team, in addition to pharmacy nursing specialists and local outreach nurses are able to use home visits as a primary delivery strategy for IHTC services and as an opportunity to evaluate a patient s home environment. 16

19 These community based services include bleeding assessments, treatment and infusion therapy, education, training, social work assessments and interventions, career and education support, weight management and nutrition support, physical therapy and mobility assessments, home safety, genetic counseling, family planning, and research services. Home visits ensure that patients do not go without diagnosis, treatment or care, or the opportunity to participate in a research study due to lack of transportation or financial constraints. Home visits are provided without charge by the IHTC. IHTC Statewide Outreach Map Home Visits Provided by IHTC Clinicians & Multidisciplinary Staff 1 Local Nursing Support As a national leader in delivery of services to remote and diverse communities, the IHTC takes the concept of outreach further by establishing local nursing support throughout the state. Two nurses are employed in the Shipshewana and Berne area to serve bleeding disorder patients and to extend care to the Amish communities in Indiana. In South Bend and Fort Wayne, the IHTC engages three local nurses, who, through contracts with their hospitals, regularly dedicate a portion of their time to bleeding disorder patients in their area. Local nurses benefit bleeding disorder patients by providing improved access and communication to IHTC expert care, remote access to the IHTC s staff and EMR, rapid response to acute health issues, and local expertise in navigating local emergency or specialty care IHTC 2. Evansville 3. Merrillville 4. South Bend* 5. Middlebury* 6. Ft. Wayne* 7. Berne* * Local nurse engaged by the IHTC to assist with care and outreach services in this area. 947 Patient Encounters Through Community Based IHTC Nursing Support 17

20 Pharmacy Program The IHTC s pharmacy program is integrated into the IHTC s medical services. This integration enables the IHTC to offer a pharmacy program that is distinct from others, remaining the most cost effective entity in the state for the delivery of clotting factor concentrates. Cost contained factor concentrate, 24 hour access, rapid statewide delivery and assay management are a few of the unique benefits available to patients who choose the IHTC pharmacy. The IHTC pharmacy operates a Public Health Service 340B and a Non-340B program. The pharmacy program s overall pricing structure allows the IHTC to dispense clotting factor concentrates at reduced prices, saving patients and their health insurance providers significant dollars. The IHTC pharmacy assists with enrollment in patient assistance programs to ensure no patient is without clotting factor concentrate during a lapse of insurance coverage. Pharmacists, pharmacy technicians, nurses and patient service representatives are all part of the IHTC pharmacy program team. This team interacts daily with IHTC medical staff, ensuring treatment therapy is seamless for IHTC patients, from order to delivery. IHTC pharmacists are available 24 hours a day, seven days a week, including holidays, and coordinate emergent patient needs with the on-call physician. The IHTC pharmacy provides scheduled, unscheduled and emergent shipments anywhere in the state with delivery in under 4 hours. The IHTC pharmacy is the only program in Indiana that can guarantee this rapid delivery throughout the state. Before shipping any medication, pharmacy staff proactively communicate with patients to manage their clotting factor concentrate needs and inventory; the pharmacy does not auto-ship any medication. At the time of every refill, pharmacy staff review a patient s compliance with therapy, discuss treatment logs and review bleeding episodes or concerns. Pharmacy staff notify IHTC physicians, nurses or multidisciplinary team members if the need for further assessment or follow-up is identified during a pharmacy contact. In addition to providing clotting factor concentrates, the pharmacy dispenses all necessary infusion supplies at no additional cost to patients or their health insurance provider. These supplies include a specially designed sharps disposal container which allows biohazardous material to be shipped and destroyed by approved methods. The pharmacy maintains an adequate inventory of clotting factor concentrates and relative assays to meet individual patient needs and to provide expedited service in emergent situations. Because of the pharmacy s wide inventory of assays, dispensations of clotting factor concentrate are on average within 2% of the prescribed dose. The lot numbers of dispensed clotting factor concentrates are tracked in the unlikely situation of a product recall or other adverse event. Each dispensation is packaged in a damage resistant, temperature controlled container at no additional cost. $9.7 million 670 4, million Dollars Saved by Health Insurance Plans Number of Patients That Received Medication From the IHTC Pharmacy Number of Patient Encounters by Pharmacy Staff Members Number of Compassionate Clotting Factor Concentrate Units Provided to Patients % Patients Reported Quality of Pharmacy Services to be Good to Excellent % Patients Reported Quality of Pharmacy Nurses Care to be Good to Excellent 18

21 Collaboration In addition to collaborating with institutions and care providers to establish a community based network of nursing support, the IHTC has developed many partnerships, local and national, to further the care of persons with bleeding and clotting disorders. These collaborations share the IHTC s expert knowledge and resources with colleagues around the world. One of the IHTC s earliest collaborations began with the National Hemophilia Treatment Center network. This HTC collaboration includes the Partners in Bleeding Disorders Education Program, which provides education to the entire HTC network. The IHTC also collaborates with HTCs to provide assistance in program development, expanding multidisciplinary services at other centers and conducting clinical and observational research studies. National The IHTC works with the National Hemophilia Foundation to support patient advocacy and provide education at patient and provider meetings. Also at the national level, the IHTC works with the Hemophilia Alliance, supporting Hemophilia Treatment Centers by advocating for their support. The IHTC teams with the American Thrombosis & Hemostasis Network to assist in the organization s mission to steward a securely maintained national database to advance patient care through support for analysis, research, advocacy and public health reporting in the bleeding and clotting disorders communities. As part of this collaboration with ATHN, the IHTC participates in the ATHN/CDC Public Health Surveillance Project designed to observe how bleeding and clotting disorder patients utilize HTC services. The IHTC collaborates with governmental agencies at the national level, including the Centers for Disease Control and Prevention. Other partnerships with medical centers and universities facilitate research and create new protocols for bleeding disorder treatment. Individual IHTC staff provide leadership and oversight to many scientific councils and educational organizations across the U.S., including the American Thrombosis & Hemostasis Network, National Society of Genetic Counselors, NHF s Medical & Scientific Advisory Council, Rare Bleeding Disorders and Physical Therapy working groups. State, Regional, National, International At the state and regional levels, the IHTC partners with Hemophilia of Indiana (HoII) and HTCs in neighboring states to provide education, patient advocacy, research and community events. HoII collaborations include the Delta Dental Program, MedicAlert Program and transportation and financial assistance services. The IHTC collaborates with the Hemophilia Foundation of Michigan, its regional HTC core center, on issues such as the Partners in Hemophilia Education program as well as to ensure adequate access to care for underserved communities regionally. In northern Indiana, the IHTC partners with the Amish community to provide the Community Dental and Community Health Clinics, to reach medically underserved children with special healthcare needs and low-income families. The IHTC has a relationship with Indiana University, providing non-malignant hematology training to Adult Hematology/Oncology Fellows. In addition, the IHTC and Indiana University have also partnered with Moi Teaching and Referral Hospital (MTRH) in Eldoret, Kenya, to develop a Kenyan program for individuals with bleeding disorders. The IHTC established this collaboration to begin western Kenya s first comprehensive HTC. Also at the international level, the IHTC collaborates with the International Registry of Rare Bleeding Disorders to provide the Rare Coagulation Disorders Reading Room, furthering awareness and understanding of rare disorders. Consultation & Referral Medical professionals refer to the IHTC because of its care and services. The knowledge of IHTC s expert physicians and multidisciplinary staff is unmatched in Indiana. The IHTC exceeds the national staffing standards to provide comprehensive services. The range of services available through the IHTC is rarely found in one location. The IHTC s expert knowledge is only a phone call away for physicians who desire consultation or for patients that require specialized care. Referring a patient to the IHTC ensures they will receive the highest quality, 19

22 most advanced care available, regardless of location. The IHTC staff can provide outpatient and inpatient consultations 24 hours a day, 7 days a week. For providers throughout Indiana, expert care is close at hand. 701 Hospital Consultations Provided 688 Referrals Made to the IHTC Programs Targeted to Meet the Needs of Those We Serve Since its inception, the IHTC has strived to develop innovative wide-ranging programs to meet the needs of patients throughout their lifespan. The IHTC is a leader in program development extending services where they are needed and creating new initiatives to fill current gaps. The IHTC s bleeding and clotting disorders programs follow a life-course model, meeting a patient s needs at each stage of life. Key IHTC programs include Comprehensive and Outreach Clinics, Prophylaxis Treatment Program, Surgery Coordination Program, 18 Steps to 18 Transition Program, Delta Dental Program, Amish Community Dental and Community Health Clinics, Kenya Twinning Program, Disease Management Program, Camp Brave Eagle and Thompson Outpost Leadership Camps, Research Programs, Partners in Bleeding Disorders Education Programs, Anticoagulation Management Program, and the Sickle SAFE Newborn Screening and Follow-Up Program. The IHTC s extensive programs include many services from the multidisciplinary team. Camp Brave Eagle Camp Brave Eagle is a program following the IHTC s holistic model of care. This camp has a rich history, beginning in 1988 when its precursor was started by Amy Shapiro, M.D. In 1998, the IHTC was formed and Camp Brave Eagle was officially established. The IHTC provides both medical and programmatic staff. This weeklong camp is an invaluable opportunity for children with bleeding disorders, and their siblings, to participate in a traditional summer camp experience within a medically safe environment. Camp Brave Eagle includes many expected camp activities swimming, boating, fishing, archery and climbing. However, camp goes beyond the expected and unites children who may have never met another person with a bleeding disorder. The IHTC has developed additional programs within Camp Brave Eagle, including infusion training, a sibling program and a special needs cabin. Consistent with other IHTC programs, Camp Brave Eagle is accessible to all the cost is contained and all families and siblings have access. No child is refused because of an inability to pay. 910 Attendees Since Inception: Attendees Participating in Self-Infusion 20

23 Thompson Outpost Leadership Camp In 2007, in collaboration with Hemophilia of Indiana, the IHTC began Thompson Outpost Teen Leadership Camp. This camp provides young men with hemophilia an adventure and leadership experience that includes demanding while gratifying activities such as white-water rafting. Participants test their physical limits and rely on teamwork to complete activities. Essential to the Thompson Outpost experience is the opportunity for young men to relate with their peers about living with a bleeding disorder and its effect on their lives. The impact of camp and the relationships it cultivates are far-reaching creating connection between teens who may be isolated in their hometowns and equipping them to become the next generation of leaders within the bleeding disorder community. Thompson Outpost Leadership camp facilitates identity-building for young men nearing adulthood. These young men grow to become role models for future generations. A number of Thompson Outpost participants have gone on to serve as delegates in the National Hemophilia Foundation s National Youth Leaders Institute (NYL). The NYL develops young leaders across the country to facilitate education, connectedness and engagement in youth within their local communities. 67 Attendees Since Inception: 2007 Diverse Communities Bleeding and clotting disorders affect all ethnicities, cultures, genders and ages. The IHTC has a longstanding history of tailoring services to diverse populations to equalize care. Tailored services range from a Spanish language interpreter for Hispanic patients to pregnancy services sensitive to Amish culture. The IHTC creates culturally-sensitive programs and education by soliciting input and involvement from members and leaders within a specific community. The IHTC s Amish programs the Community Dental and Community Health Clinics have been created with participation and oversight from Amish community leaders to ensure these programs support the community s values and beliefs. In addition, IHTC local nursing staff who work with the Amish are knowledgeable of Amish values and provide care in a manner that supports, rather than alienates community members. Tailoring services to a diverse community requires the recognition of distinct barriers and challenges to care. To address the Amish community s lack of insurance coverage and its critical need for clotting factor concentrates, the IHTC dispenses compassionate clotting factor concentrates to the community. The IHTC has also developed culturally-sensitive services to international communities. The Kenya Twinning program follows a comprehensive model of care that incorporates cultural and socioeconomic concepts into education and treatment therapy. The IHTC maintains a diverse staff; currently there are 9 languages spoken at the center. Select IHTC educational materials are available in languages other than English. Spanish language interpretation is available at the IHTC during clinic appointments. The IHTC has 24 hour access to a personal interpreter service providing interpretation for any language. The IHTC provides staff to support Hemophilia of Indiana s Hispanic outreach program, Latinos Unidos, for Spanish-speaking persons and families affected with bleeding disorders. $2.6 million Value of Compassionate Clotting Factor Concentrate Dispensed to the Uninsured Annually 207 Amish Patients 9 Number of Languages Spoken by IHTC Staff 21

24 Sean and DJ s Story Building Relationships for a Lifetime Brothers Sean & DJ share a contagious energy, drawing laughter from everyone they encounter. The brothers also share a home and spend time together at the performing arts center where their sister works, designing and constructing sets and acting as backstage tech crew. The brothers credit the IHTC and the Camp Brave Eagle program for teaching them to successfully manage their hemophilia. We grew up with Dr. Shapiro and camp, says DJ. And now, as adults, we ve transitioned to Dr. Greist. They really know us. Camp was also instrumental in developing their independence 1009-ImpactReport_V23.indd 22 while connecting them to the greater bleeding disorder community. Camp Brave Eagle combines traditional camp activities with education, training and relationship building. When we were 6 or 7 years old, they taught us how to self-infuse, Sean recalls. It s like tying my shoes now. It s something you don t forget. Camp is the big thing, and we still have friends from years ago. Now as adults, DJ and Sean assist at camp, knowing what a critical experience it is. There are people we ve grown up with through camp and have seen for years and years, and it makes us feel unified, DJ says. 4/18/13 3:37 PM

25 Extending Education Across the Country Did you know Indiana is home to the country s foremost bleeding disorder educational program? In addition to this program for the HTC network, the IHTC provides education for non-htc clinicians in Indiana and around the country. Education for health care providers is delivered in a clinic or medical office setting, at a hospital or during a professional conference. Patients and families similarly have an opportunity to receive education in clinic, at a home visit, in a small group or during a larger conference. Expert education and training is available to community members and care providers throughout the state, including teachers and school nurses. The IHTC has developed a free school education program available to all school professionals; two free online learning modules for school nurses are also available to assist them to coordinate care for a student with a bleeding disorder. A wide variety of IHTC educational resources are available online via the IHTC website, in print and in video. The IHTC also cultivates international collaborations, such as with the World Federation of Hemophilia, to deliver wide-scale, comprehensive education to improve care throughout the world. The Partners Program To ensure advanced care for persons with bleeding disorders throughout the country, the IHTC established the Partners in Bleeding Disorders Education Programs. Launched in 1996, Partners is the longest-running curriculum-based national education program for HTC professionals and the only program endorsed by MASAC, the National Hemophilia Foundation s Medical and Scientific Advisory Council. Participation in Partners is free, and program components include inperson and online learning modules. Partners is a collaborative program between the IHTC, NHF and the Hemophilia Foundation of Michigan, and programming is reviewed by a national Partner s Advisory Board. There are several distinct programs within Partners: The Basic Partners Program strengthens the knowledge and skills of the comprehensive care team through highly accessible two-and-a-half day sessions held at the IHTC. Session size is limited to ensure an interactive and personal learning experience. Hands-on training includes observation of the IHTC comprehensive clinic and interaction with the on-site multidisciplinary staff. Advanced Partners I and II Programs are tailored to experienced nurses, nurse practitioners, physician assistants and other national health care providers who have at least 2 years experience working at an HTC and are confident in their decision-making for bleeding disorders patients. These sessions are each offered one time per year; curricula is customized to the audience, supplementing classroom learning with in-depth case studies and discussions. PartnersPRN.org is an online learning system that provides access to training from any location, at any time. The dynamic, web-based system allows flexibility for content revision, expansion, and growth as participants needs change. PartnersPRN is comprised of open and closed access systems. The closed access system is 23

26 exclusively for HTC professionals and is designed to address gaps in current training programs. Content is available for Continuing Nursing Education (CNE) credits through a partnership with the University of Nebraska College of Nursing Continuing Nursing Education. The open access system offers education for non-htc physicians, nurses and health care providers who treat persons with bleeding or clotting disorders in their practice. There are many modules available within the open system, including the Bleeding Disorders Primer, which is available for CME as well as CNE credit. Partners Presentation Skills Workshop is an in-person training program for individuals working within the HTC network who want to improve their presentation skills, with the goal of improving delivery of educational content nationally. Developed by HTC educators, the Presentation Skills Workshop is hosted once yearly. As part of the Partners Program, the IHTC is developing a bleeding and clotting disorders Nurse Portfolio Recognition Program. For this program, qualified HTC nurses will submit portfolios documenting achievement of specific core competencies and will receive a Board Certified credential. This program is a collaborative effort of the IHTC, American Thrombosis and Hemostasis Network (ATHN), and American Nurse Credentialing Center (ANCC). The program has been met with tremendous enthusiasm by HTC nurses who have long desired a hemophilia and thrombosis nurse credentialing program. The Portfolio Recognition Program is slated to launch in mid Number of Persons Educated Through the Partners Program To Date 425 Basic 191 Advanced I & II 71 Presentation Skills PartnersPRN 37 Modules Available in the Closed Access System 29 Modules Available in the Open Access System 703 Users in the Program 593 Number of Modules Completed Since Inception 24 Education for Medical Professionals In addition to the Partners Program, medical professionals have a variety of avenues to access expert education and training from the IHTC including grand rounds, CME presentations, conference lectures, even over-the-phone consultative education. These services are available to any health care provider, as all clinical specialties may encounter persons with bleeding and clotting disorders. Fellows and medical professionals from around the world come to the IHTC to receive specialized education and training. IHTC physicians provide regular education and supervision to residents and fellows at St. Vincent Hospital in Indianapolis. The IHTC recognizes the importance of education on rare bleeding disorders. These rare disorders are so infrequently encountered, they are likely under recognized by most health care providers. To further awareness and understanding of these rare disorders, the IHTC developed the Rare Coagulation Disorders Resource Room. This website ( in collaboration with the International Registry of Rare Bleeding Disorders provides current and searchable information on the basic science and clinical management of rare bleeding disorders, creating a highly accessible web-based format for providers who wish to learn about these disorders. 5,276 Clinicians Educated via Conference Presentations or Grand Rounds

27 John s Story Pursuing a Full Life John is a husband, father and deputy for the Madison County Sheriff s Department in Anderson, Indiana. He enjoys physical activities and hands-on projects such as building and restoring. Most recently he constructed an outdoor playhouse for his 3-year-old daughter. When John was an infant, he experienced a significant hip bleed. Following exploratory surgery to determine the cause, John s parents were informed he had hemophilia. Information about the disorder was limited at that time, and initially John s parents were fearful after hearing some children with the disorder might not live past their teenage years. Growing up, John s parents were supportive and encouraged him to be active. In a caring way, they let me do what I felt I could do, says John. I don t feel like there s anything I can t do because of my hemophilia. This assuredly 1009-ImpactReport_V23.indd 25 positive attitude has established John as a leader and role model in the bleeding disorder community. John occasionally experiences arthritic pain related to his hemophilia, but it doesn t prevent him from living a full life and pursuing his goals, such as a developing career in law enforcement. John shares a close partnership with the IHTC, becoming an active participant in IHTC research about 4 years ago. John recently ended a three and a half year study. It was kind of like a breakup with a girlfriend when the study ended, John says with a laugh. He is beginning another study that will also last several years. John s relationship with the IHTC is one he defines as reciprocating. I help them, they help me, he says. They ve been a real blessing for me, and it s been a pleasure to work with them. 4/18/13 3:37 PM

28 Board of Directors The IHTC s Board of Directors supports and guides the center. Board members bring a wealth of talent, expertise and perspective and remain engaged and involved in issues and decisions that impact the IHTC. The following individuals comprise the IHTC s outstanding Board of Directors: Front Row Amy Shapiro, M.D. CEO and Medical Director, IHTC Back Row Phillip E. Himelstein, Esq. Founder and Co-managing Partner, Hilan Capital Anne Greist, M.D. Medical Director, IHTC Edward R. Schmidt, Esq. President, Silver Creek Partners, LLC Leah Meyer Austin Retired executive from a national non-profit foundation Ike G. Batalis Founder and CEO, Batalis & Associates, LLC Russell W. Sherlock Entrepreneur and Founder, Health Systems International Kevin W. Betz, Esq. Founder and Managing Partner, Betz & Blevins 26

29 Looking to the Future The IHTC will remain the center of excellence in Indiana providing the highest quality comprehensive health care to patients and their families, educating medical professionals around the state, region, throughout the country and world, and will continue to work to advance care through advocacy and research. IHTC programs and services will adapt and expand to meet the changing needs of patients and families, and will respond to medical advances and discoveries in the coming years. At the forefront of care, the IHTC will remain a lifelong, faithful health care provider to patients and their families, and a colleague and support to the health care community.

30 IHTC Publications in 2012 Articles: 1. Young G, Shapiro AD, Walsh CE, Gruppo RA, Gut RZ, Cooper DL. Patient/Caregiver-reported recombinant factor VIIa (rfviia) dosing: home treatment of acute bleeds in the Dosing Observational Study in Hemophilia (DOSE). Haemophilia. 18(3) Berntorp E, Shapiro AD. Modern Hemophilia Care. The Lancet. 379(9824): Shapiro AD, Ragni MV, Valentino LA, Key NS, Josephson NC, Powell JS, Cheng G, Thompson AR, Goyal J, Tubridy KL, Peters RT, Dumont JA, Euwart D, Li L, Hallén B, Gozzi P, Bitonti AJ, Jiang H, Luk A, Pierce GF. Recombinant factor IX-Fc fusion protein (rfixfc) demonstrates safety and prolonged activity in a phase 1/2a study in hemophilia B patients. Blood. 119(3): Bellissimo DB, Christopherson PA, Flood VH, Gill JC, Friedman KD, Haberichter SL, Shapiro AD, Abshire TC, Leissinger C, Hoots WK, Lusher JM, Ragni MV, Montgomery RR. VWF mutations and new sequence variations identified in healthy controls are more frequent in the African- American population. Blood. 119(9): Berntorp E; Shapiro A; Waters J; Astermark J. The International Factor IX Treatment Network Survey. Haemophilia. 18(3):e60-e Duncan N, Shapiro A, Ye X, Epstein J, Luo MP. Treatment patterns, health-related quality of life and adherence to prophylaxis among haemophilia A patients in the United States. Haemophilia. 18(5): Shapiro AD, Cooper D. US Survey of Surgical capabilities and experience with surgical procedures in patients with congenital haemophilia with inhibitors. Haemophilia. 18(3): Astermark J, Donfield SM, Gomperts ED, Schwarz JA, Menius ED, Pavlova A, Oldenburg J, Kessing B, DiMichele DM, Shapiro AD, Winkler CA, Berntorp E. The polygenic nature of inhibitors in hemophilia A: results from the Hemophilia Inhibitor Genetics Study (HIGS)Combined Cohort. Blood. Epub Dec Escobar M, Maahs J, Hellman E, Donkin J, Forsyth A, Hroma N, Young G, Valentino LA, Tachdjian R, Cooper DL, Shapiro AD. Multidisciplinary management of patients with haemophilia with inhibitors undergoing surgery in the United States: perspectives and best practices derived from experienced treatment centres. Haemophilia. 18(6): Martinowitz U, Shapiro A, Quon DV, Escobar M, Kempton C, Collins PW, Chowdary P, Makris M, Mannucci PM, Morfini M, Valentino LA, Gomperts E, Lee M. Pharmacokinetic properties of IB1001, an investigational recombinant factor IX, in patients with haemophilia B: repeat pharmacokinetic evaluation and sialylation analysis. Haemophilia. 18(6): Abstracts: 1. Greist A, Shapiro A, Kruse-Jarres R, St Louis J, Smith H, Gomperts E. Efficacy and safety of B-domain deleted recombinant porcine factor VIII (OBI-1) in the treatment of acquired hemophilia A: interim results. Haemophilia.18(S3): Shapiro, A, Khair K, Ghandehari H, Song C, Leony-Lasso I, Schoenig-Diesing C, Spotts G. Prospective Advate Immune Tolerance Induction Registry (PAIR) in Hemophilia A Patients with Inhibitors: Interim Report. Haemophilia 18(S3): Chambost H, Rafowicz A, Guillaume Y, Liesner R, Nolan B, Shima M, Shapiro A. Perinatal practices in the context of hemophilia carrier: Exert opinion from an international pediatric panel. Haemophilia 18(S3): Suiter TM, Mannucci PM, Kempton CL, Laffan M, Romond EH, Shapiro AD, Birschmann I, Ragni MV, Gill JC, Klamroth R, Reipert BM, Turecek PL, Varadi K, Chapman M, Engl W, Ewenstein BM, and RHVWF Study Team. Detection of non-inhibitory binding antibodies to von Willebrand factor affecting the clearance of VWF:Ag in von Willebrand disease. Haemophilia 18(S3): St. Louis J, Kruse-Jarres R, Greist A, Shapiro AD, Smith H, Drebes AB, Lozier JN, Gomperts ED. Recombinant B-Domain Deleted Porcine Factor VIII (OBI-1) Safety and Efficacy in the Treatment of Acquired Hemophilia A: Interim Results. Blood. Nov. 120: Gomperts ED, Apte S, Chaudhuri U, John JM, Ramanan V, Liesner R, Shapiro AD, Mills BJ, Lee M. IB1001, an Investigational Recombinant Factor IX, Pharmacokinetics in Pediatric Patients with Hemophilia B. Blood. Nov. 120: Mahlangu J, Powell J, Ragni M, Chowdary P, Josephson N, Pabingerfasching I, Hanabusa H, Gupta N, Kulkarni, R, Fogarty P, Perry D, Shapiro A, Pasi J, Krassova S, Jiang H, Li S, Neelakantan S, Greblikas F, Goyal J, Sommer J, Dumont J, Innes A, Nugent K, Brennan A, Vigliani G, Luk A, Pierce G. Phase 3 clinical study of recombinant FC fusion factor FVIII (RFVIIIFC) demonstrated safety, efficacy, and improved pharmacokinetics (A-LONG). Haemophilia. 19(S2): Gupta S, Siddiqi A, Soucie JM, Manco-Johnson MJ, Kulkarni R, Lane H, Ingram-Rich R, Gill JC. Effect of Secondary Prophylaxis versus Episodic treatment on Range of Motion of a Target Joint in Hemophilia Patients. American Journal of Hematology. Thrombosis and Hemostasis Summit of North America (THSNA), Meeting proceedings, May Volume 87(S1):B Nakar C, Shapiro A. Inhibitors, Tolerance and alchemy. Review of current key literature on Hemophilia. IMH 20:1 pages Nakar C, Shapiro AD, London ZN. Hemophilia: Neurologic Aspects. Medlink Neurology. Aug. 13, < medlink.com/medlinkcontent.asp/>

31 Unparalleled Excellence Now you know the IHTC Indiana s only federally recognized comprehensive hemophilia center and one of the nation s leading multidisciplinary experts in bleeding disorder care.

32 our mission The Indiana Hemophilia & Thrombosis Center is committed to providing the highest quality comprehensive healthcare services to patients with bleeding and clotting disorders, and to their families CLOTTER 1009-ImpactReport_V23.indd 30 4/18/13 3:37 PM