Hemophilia Treatment Center Network
Families affected by bleeding disorders have many stressors. They must learn about their specific bleeding disorder and stay informed about treatment options. They must monitor and respond to bleeding episodes and their secondary effects; they must secure a way to pay for very expensive treatment (the cost of treatment for a severe hemophilia can be as high $100,000/year). Families also must educate others who interact with their child and dispel misconceptions and fears associated with their disease and its complications.
Adults face even greater challenges as their children reach school age and want to participate in activities and be independent. These problems can become overwhelming and it is fortunate that in Michigan and across the U.S., a well organized network of hemophilia treatment centers was created with funding from the federal government and from some of the states which provide comprehensive services delivered by multi-disciplinary teams specially trained to respond to the problems faced by families affected by hemophilia and other bleeding disorders.
In the 1970s, as many advances were made in hemophilia treatment, the focus of hemophilia care shifted from crisis and emergency management of bleeding episodes to long-term problems such as the prevention of joint disease, home treatment, education, employment, and other psychosocial factors. Federal legislation in 1976 established and provided funding for a network of comprehensive care centers.
These REGION V-EAST hemophilia treatment centers (HTCs) now provide and coordinate a broad range of treatment and prevention services provided by physicians who specialize in hematology and other relevant specialties such as orthopedics, social work, psychologists, nurses with extensive training and experience with hemophilia, genetic counselors, dentists, dental hygienists, and dieticians.
Benefits of Comprehensive Care and Treatment
In its first ten years, comprehensive care provided by HTCs resulted in:
- An increase of 390% in the number of patients performing home infusions
- A decrease in the average number hospital admissions of 88%
- A decrease in the average days/year lost from work or school of 73%
- Accompanied by a 74% decrease in adult unemployment
- A decrease in the average cost of care per patient per year of 74%
CDC Data Shows Lower Death and Hospitalization Rates
Newer data collected by the CDC confirms that, in addition to these benefits, receiving treatment from a federally funded HTC also decreases the risk of death and hospitalization for persons with hemophilia, particularly those who self infuse. For this reason, now more than ever, it is important to carefully consider where you and/or your child receives medical care for your bleeding disorder and whether you are receiving the best care available.
Patient Choice Policies
With enhanced support services provided through the HTCs, there have been and continue to be major increases in the numbers of people with hemophilia who perform home infusion. To serve patients on home infusion, there has been a proliferation of private companies who supply factor and other services and supplies. The government also supports HTC-based factor programs that generate income for HTC operations. When a person is started on home infusion, treatment centers must respect the rights of patients and families to choose among suppliers of factor product and support services. For this reason, all treatment centers are required to maintain patient choice policies to assure that patients have sufficient information about their options with respect to alternative suppliers and products to make informed choices about their supplier and their product.
REGION V-East Comprehensive Care and Prevention Core Center
HFM serves as the federal regional core center for the largest network of Hemophilia Treatment Centers (HTCs) in the country. HFM secures and administers federal and private grants to support nineteen (18) HTCs in Michigan, Ohio and Indiana. See a listing of Region V-East Hemophilia Treatment Centers.
Medical services are directly provided by nationally and internationally recognized medical staff who are specialists in the care and treatment of bleeding and clotting disorders.
Improved Access to Care
HFM funding improves access to care for underserved populations (including women and racial/ethnic minorities), enables HTCs to participate in surveillance projects of the Centers for Disease Control and Prevention to monitor and ensure blood safety, and provides infrastructure support for comprehensive health care, education and support services.
Under the direction and guidance of HFM, HTCs provide access to care for over 4300 patients with bleeding disorders. Region V-EAST HTCs serve more active patients, more hemophilia B patients and more Von Willebrand patients than any other region in the country.
Collaboration across REGION V-East
HFM collaborates with the HTCs to develop and coordinate regional programs, provide technical assistance, organize professional education and training, and conduct quality evaluations through data collection and analysis and regular HTC site visits.
HFM holds quarterly provider meetings and develops regional goals, objectives and programs to respond to consumer and federal initiatives and priorities. HFM works closely with the Cascade Hemophilia Consortium to assure continued access to low-cost factor products and financial support for HTC services and programs.
HFM also works with state Title V (Children with Special Health Care Needs) and other state government programs to coordinate care and services, to assure accessibility and to advocate for members of the bleeding disorders community served by these state programs.
This Web site is created for information purposes only and not to render medical advice or professional services. The information provided herein should not be used for diagnosing or treating a health problem or a disease and is not a substitute for professional care from your own physician. If you think you have, or if you do have, a health problem or a specific health care question or concern, you should consult you physician or health care provider.
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