Importance of Being Treated at Comprehensive Hemophilia Treatment Centers
In the early 1970's the National Hemophilia Foundation spearheaded a campaign to create a network of comprehensive hemophilia treatment centers designed to provide advanced care for people living with the hemophilia in the United States.
Hemophilia is a complex, inherited bleeding disorder caused by a deficiency in clotting factors. (Usually factor VIII or IX.)
It is also extremely rare. The Center for Disease Control estimates that about 20,000 people have hemophilia in the U.S. today. The disorder is so rare, most healthcare providers are not familiar with the complex needs, medications, complications, and overall dynamics of hemophilia. Because of a wide range of potential hemophilia related issues and complications, hemophilia treatment also requires a multidisciplinary approach and highly specialized supportive care.
Hemophilia Treatment Centers Offer Specialized Care
This is the biggest reason that Hemophilia Treatment Centers are so vital to those living with the disease. Studies by the Center for Disease Control have shown that hemophilia patients who received care at a hemophilia treatment center were 40% less likely to die of bleeding related complications that those who received care elsewhere.
They were also 40% less likely to require hospitalization when treated at a hemophilia center, rather than another facility when experiencing a bleed.
Comprehensive Hemophilia Treatment Centers Across the Country
Today there are over 140 federally funded comprehensive hemophilia treatment centers spread across the nation. These centers provide a wide range of services. They are typically staffed by highly trained specialists including:
- Hematologists (physicians who specialize in blood diseases and disorders)
- Pediatricians specializing in hemophilia
- Psychologists, social workers, and insurance specialists to help with funding, job searches, and other supportive services
- Orthopedic specialists
- Nursing staff trained in bleeding disorder care
- Physical therapists
- Coagulation laboratory specialists
- Specially trained phlebotomists
- Dentists and others
Hemophilia treatment centers focus on treating, reducing and preventing complications from hemophilia, as well as providing targeted research on hemophilia and other bleeding disorders. They also help by providing education about self-infusion. This helps kids with hemophilia transition from childhood into adulthood with more independence.
Higher Levels of Care with Lower Risk of Complications
Using a proactive treatment model and an interdisciplinary team can also dramatically lower the risk of hemophilia associated complications such as:
- Joint and bone deformity
- Neurological complications
- Transfusion transmitted diseases and infections
- Renal (kidney) complications
- The development of inhibitors
Centralized locations allow medical researchers, who might otherwise have limited access to data, compile information and collaborate on care models for hemophilia and other bleeding disorders. By working together and sharing information, researchers can improve hemophilia and bleeding disorder protocols and develop more effective treatments.
Universal Data Collection
Hemophilia Treatment Centers also allow patients to choose to participate in Universal Data Collection, or UDC, regarding their medical care for hemophilia. The data collection is used to help create more effective strategies for patient care, safeguard patient health, and improve the safety of treatments and hemophilia related blood products. All participation is voluntary. For more information on the Center for Disease Control UDC program.
Supportive Services, Resources and More
Additionally, comprehensive hemophilia treatment centers also provide supportive services such as:
- Genetic testing
- Help locating funding to pay for treatment
- Guidance concerning employment rights and career options
- Community networking
- Hemophilia community events such as camps for kids with hemophilia
- Individual protocol plans to help patients live longer, healthier lives
ASP Cares is a specialty pharmacy dedicated to serving those with rare conditions and disorders such as hemophilia. Our highly trained, dedicated pharmacists and clinicians are experts in all areas of hemophilia.
We understand the unique challenges that hemophilia presents. That's why we stock a wide array of critical medications, clotting factors, home infusion supplies, and more. We proudly offer complimentary delivery to all of our valued patients.
If you, or someone you care for is living with hemophilia, we can help. Click here for more information.
ASP Cares. Big enough to serve. Small enough to care.
This content does not represent medical advice. It is not meant to diagnose or treat any condition. It is not intended as a substitute for the advice of a qualified medical provider.