Resources

Treatment Options - Region IX Overview

Region IX is part of a nationwide network of federally designated Hemophilia Treatment Centers established to promote comprehensive hemophilia care and to prevent hemophilia complications. It is supported by the Federal Maternal and Child Health Bureau (MCHB) and Centers for Disease Control and Prevention (CDC).

Comprehensive care teams at these centers include hematologists, orthopedists, nurses, social workers and physical therapists. For HIV and hepatitis, other disciplines are consulted, including infectious diseases, immunology, gastroenterology, health education, psychology and psychiatry. Centers coordinate care with dentists, genetic counselors and primary care physicians. This care has preventative, diagnostic, and rehabilitative components. In fact, data from the Centers for Disease Control and Prevention documents that care at hemophilia treatment centers reduces the risk of death by 60% and hospitalizations by 50%.

The Region IX oversees a network of 15 hospital-based Hemophilia Treatment Centers that serve residents of California, Nevada, Hawaii and the U.S. affiliated Pacific Territories. Its staff manages federal grants, maintains databases, administers multi-site research, creates clinical and patient education seminars, monitors health policy, conducts outreach, develops new centers, provides technical assistance, and works with federal, state and local health departments. Currently Region IX centers care for nearly 3,500 active patients with bleeding disorders and 1,000 with inherited clotting disorders.

Genetically Handicapped Persons Program Application

GHPP applications (eligibility and financial):

Treatment Options

Hospitals

Finding Medical Care – Why it’s important to be an informed consumer! Finding the appropriate ancillary medical care is extremely important to individuals affected by hemophilia. While Hemophilia Treatment Centers (HTC) provide comprehensive care, not all individuals will have access to their services. However, HTC’s still serve as a great resource in connecting with medical professionals who can provide proper medical care. Whether you are looking into primary care, dental care, physical therapy, orthopedic, or HIV/Hep C, local HTC’s can help direct you to medical facilities and providers that are familiar with bleeding disorders. Failure to do so may severely jeopardize your health. Medical practitioners unfamiliar with Hemophilia, or other bleeding disorders, may not provide you with the appropriate treatment, may subject you to treatments that are inappropriate, and may even put you at greater risk of death or permanent injury. Obtaining appropriate and comprehensive care is critical for maintaining healthy muscles and joints, preventing further complications from HIV/Hep C, and for maintaining a long and healthy life. Please contact the foundation if you need any assistance in contacting your local Hemophilia Treatment Center.

Finding Medical Care

What to know when you do not have access to an area Hemophilia Treatment Center: Depending on your insurance options, you may or may not have direct access to a local Hemophilia Treatment Center (HTC). Many times, individuals assume they do not have access through their insurance, but upon further investigation, find that they do indeed have the appropriate medical coverage to be seen at an HTC. Many insurance carriers will allow you to be seen at an HTC for a yearly comprehensive visit once they see the overall benefits to you or your loved one with a bleeding disorder. It has been shown that the comprehensive health management and prevention services offered by the HTC helps reduce complications related to Hemophilia, therefore improving the quality of life for those affected and reducing long term medical expenses. If you find that you truly do not have access to an HTC, call our Foundation and talk to our Community Health Advocate. She will be glad to assist you in either acquiring access to a local HTC or in finding alternative quality medical care. If transportation is an issue please let us know! As the primary advocacy agency serving the bleeding disorders community, we strongly believe that transportation should not be a barrier to getting the appropriate treatment. We will either help you directly, by providing funds for a taxi service, or we will help you to contact a non-profit agency in your area that provide the necessary transportation.

Medical Centers with Hemophilia Programs (Southern California)

Federally Supported HTCs CDC data showing 60% reduction in mortality and 50% reduction in bleeds related hopitalization if males with hemophilia go to a federally supported HTC.