Partnering Throughout Indiana and Beyond
Advancing the research, education and treatment of rare bleeding and blood disorders would not be possible without IHTC's numerous local and global partnerships.
Hemophilia of Indiana, Inc. (HoII), is dedicated to empowering the bleeding disorder community through education and support, while advocating for access to quality care and product safety. HoII traces its beginnings to the mid-1950s when families with children with hemophilia and other bleeding disorders banded together for support and advocacy. HoII was formed as a chapter of the National Hemophilia Foundation (NHF) in 1963 and was incorporated as a non-profit organization in 1972.
As Indiana’s only federally designated Comprehensive Hemophilia Treatment Center (HTC) and NHF’s only Indiana Chapter, IHTC and HoII have forged a long history of important collaborations to promote care for and education of patients with bleeding disorders.
IHTC provides financial support for several important HoII patient assistance programs including hardship support and a dental insurance program for its members.
LEARN MORE ABOUT HOII
Camp Brave Eagle was originally founded by IHTC as a summer camp program for bleeding disorder children and their siblings. Today, Camp Brave Eagle enjoys active support from both IHTC and HoII, enabling 120+ children to experience a week at camp. IHTC staff provide onsite clinical support during the week, and HoII contributes assistance with logistics and on-site coordination.
Another collaborative effort between the two organizations includes Doug Thompson Team Leadership Camp. This camp is designed for teen boys to experience an adventure camp and learn how to advance their skills in independently managing their conditions. IHTC clinical staff partner with HoII staff to ensure a safe and meaningful experience.
The Martin Center Sickle Cell Initiative (MCSCI) is committed to providing essential programs and services to benefit individuals and families affected by Sickle Cell Disease. The MCSCI also educates clients as well as community members by providing access to quality educational experiences. The IHTC and the MCSCI have collaborated on various programs and services, including a statewide Sickle Cell conference, a camp for children and adolescents with Sickle Cell Disease, and various state and federal grants aimed at improving care and services for individuals with Sickle Cell Disease. The IHTC also financially supports many MCSCI social service programs such as emergency hardship and travel assistance.
Learn more about the MCSCI
The IHTC has a long history of working with members of the Amish community to overcome barriers to care for individuals within their community affected by a bleeding disorder. From this relationship, the IHTC helped to establish the Community Dental Clinic; a local, affordable dental practice governed by representatives from the local community. Following this successful endeavor, the IHTC assisted the local community in forming a genetics clinic to address the need for local, affordable comprehensive care for individuals with other heritable disease.
Learn more about the Community Health and Dental Clinics
The Indiana Hemophilia and Thrombosis Center (IHTC) has a long-standing relationship with the Indiana University School of Medicine (IUSM). Dr. Anne Greist, co-founder and Co-Medical Director of IHTC, is also Associate Professor of Clinical Medicine at IUSM. Dr. Greist provides clinical training for all IUSM adult hematology oncology fellows. This training includes rotations onsite at IHTC. IHTC also provides financial support for the IUSM adult hematology oncology fellowship program.
The IHTC has also collaborated with the IUSM on the IU Kenya Program to develop the AMPATH Hematology Program at Moi Teaching and Referral Hospital.
The Indiana State Department of Health (ISDH) has a number of programs and services intended to benefit individuals with blood disorders. ISDH contracts with IHTC to administer the State’s Hemophilia Care and Treatment Program, which subsidizes insurance premiums for patients with Hemophilia who do not qualify for Medicaid, Medicare or employer-sponsored health insurance.
Learn more about the Indiana Hemophilia Care and Treatment Program
The ISDH has also contracted with IHTC to perform and coordinate statewide newborn screening for Sickle Cell Disease and related red blood cell disorders since 2009. The ISDH has also supported the IHTC creation of the Indiana Sickle Cell Consortium (ISCC); a statewide consortium of healthcare providers, community-based organizations, and other stakeholders focused on improving care and advocating for patients with sickle cell disease.
Learn more about the ISCC
In 1975, Congress amended the Public Health Service Act to establish Comprehensive Hemophilia Diagnostic and Treatment Centers (HTC). Using a multidisciplinary team approach, HTCs provide comprehensive diagnosis, treatment, education, outreach, outcomes surveillance, research, and low cost pharmacy services to persons with hemophilia and related inherited bleeding disorders throughout the U.S. and its territories.
The Maternal and Health Bureau (MCHB) is part of the Health Resources and Services Administration (HRSA), an operating division of the U.S. Department of Health and Human Services, and has broad oversight of the HTC program. As a federally designated HTC, the IHTC receives a grant through our regional coordinating site (Hemophilia of Michigan) to provide comprehensive care and outreach for persons with bleeding and clotting disorders throughout Indiana. As part of fulfilling responsibilities under the MCHB grant, IHTC works to fulfill the goals established by MCHB in improving care and outcomes for this vulnerable patient population.
MCHB established the National Hemophilia Program Coordinating Center (NHPCC) to coordinate activities for a collaborative national infrastructure of regional hemophilia networks to promote and improve comprehensive quality care for individuals with hemophilia and related bleeding or clotting disorders such as thrombophilia. The goals of the Center are to work in conjunction with the Regional Hemophilia Network program to strengthen the capacity of the networks to improve care and to increase the evidence base on care for patients with hemophilia and related blood or clotting disorders; and track national, regional, and patient-level data to assess patient and health outcomes. Dr. Amy Shapiro, co-founder, CEO and Co-Medical Director of IHTC, also serves as Medical Director for the NHPCC.
MCHB has also established the Sickle Cell Treatment Demonstration Project and the Sickle Cell Newborn Screening and Follow-up Program; both of which utilize IHTC as a key state lead and coordinating center.
The American Thrombosis and Hemostasis Network (ATHN) is a nonprofit organization dedicated to improving the lives of people affected by bleeding and clotting disorders. ATHN serves as a steward of the most current, extensive hemostasis and thrombosis data and analytic resources. These resources help answer difficult questions, evaluate clinical outcomes, provide evidence needed for clinical guidelines, and more.
As a founding member of the ATHN Board of Directors, Dr. Amy Shapiro, co-founder, CEO and Co-Medical Director of IHTC, played an instrumental role in establishing the organization’s vision and inspiring all federally designated HTCs to contribute important clinical data to its national bleeding and clotting disorders database.
IHTC has provided financial support to ATHN for the purpose of establishing and enhancing its database, which in turn has enabled researchers to undertake a number of important national studies.
Learn more about ATHN
The Hemophilia Alliance was established in 2004 as a not-for-profit organization that comprises federally funded hemophilia treatment centers (HTCs) that either have, or are seeking to have, pharmacy programs under Section 340B of the Public Health Service Act. The purpose of “the Alliance” is to promote the common interests of member HTCs. In addition to providing support through advocacy, they provide consultant expertise and organizational support.
The IHTC has been active in the Alliance since its establishment working to promote membership across the HTC network and advance its important benefits to members. The IHTC has further contributed to the Alliance through membership on its Board of Directors.
Learn more about the Hemophilia Alliance
The National Hemophilia Foundation (NHF) is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, the National Hemophilia Foundation has chapters throughout the country. Its programs and initiatives are made possible through the generosity of individuals, corporations and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC).
The IHTC has a long history of collaborating with and supporting NHF. Dr. Amy Shapiro, co-founder, CEO and Co-Medical Director of IHTC, served for many years as a member of NHF’s Medical and Scientific Advisory Council (MASAC). MASAC is composed of physicians, scientists and other medical professionals with a wide range of expertise on bleeding disorders, blood safety and infectious disease.
IHTC collaborates with NHF to promote ongoing training for HTC clinical staff across the country. These efforts include the Partners in Bleeding Program which is a national program originally established by IHTC. The Partners program offers multiple live training sessions at basic and advanced levels as well as online learning modules. IHTC also provides financial support for NHF’s social work and physical working groups.
Learn more about NHF
The Hemophilia Foundation of Michigan (HFM) was founded in 1956 and began as an all-volunteer chapter of the National Hemophilia Foundation. In 1984, HFM was appointed by the Maternal and Child Health Bureau as the federal Regional Core Center for Michigan, Ohio, and Indiana Comprehensive Hemophilia Treatment Centers (HTCs).
IHTC staff serve as members of HFM’s Regional Advisory Council which provides input to HFM in its role as the Regional Core Center. IHTC also provides support for HFM programs that advance education for HTC clinical staff and patients in the region. These programs include the annual Regional Meeting for HTC staff and new education programs for patients such as HFM’s Women’s Conference. Learn more about HFM
The IHTC founded the Partners in Bleeding Disorders Education (“Partners”) Program in 1996. The Partners Program promotes excellence in care through education created by and for the federally recognized Hemophilia Treatment Center (HTC) Network and providers from a variety of disciplines who serve patients with bleeding and other coagulation disorders. Programs include Basic Partners, Advanced Partners, Motivational Interviewing, and PartnersPRN online learning activities.
Learn more about the Partners program
For more than 50 years, the World Federation of Hemophilia (WFH) has provided global leadership to improve and sustain care for people with inherited bleeding disorders, including hemophilia, von Willebrand disease, rare factor deficiencies, and inherited platelet disorders. The IHTC has participated in the WFH’s Twinning Program, which supplemented IHTC’s early efforts to establish a Hemophilia Treatment Center in western Kenya. IHTC’s partners in Kenya continue to participate in the WFH Humanitarian Aid Program which provides donated clotting factor concentrate to patients in need, as well as a laboratory quality assurance program to ensure the lab in Kenya is able to provide high-quality laboratory results to clinicians and patients.
Learn more about the WFH
See IHTC in the Community