The Legislature hereby finds and declares all of the following:
(a)Hemophilia is a rare, hereditary, bleeding disorder affecting at least 4,000 persons in California and is a chronic, lifelong, and incurable, but treatable, disease.
(b)Von Willebrand disease is a human bleeding disorder caused by a hereditary deficiency or abnormality of the von Willebrand factor in human blood, which is a protein that helps clot blood. Von Willebrand disease is a chronic, lifelong, incurable, but treatable, disease affecting at least 360,000 Californians.
(c)Until the 1970s, people with severe hemophilia
suffered from uncontrollable internal bleeding, crippling orthopedic deformities, and a shortened lifespan. More recently, the production of highly purified blood clotting factors has provided pe
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The Legislature hereby finds and declares all of the following:
(a)
Hemophilia is a rare, hereditary, bleeding disorder affecting at least 4,000 persons in California and is a chronic, lifelong, and incurable, but treatable, disease.
(b)
Von Willebrand disease is a human bleeding disorder caused by a hereditary deficiency or abnormality of the von Willebrand factor in human blood, which is a protein that helps clot blood. Von Willebrand disease is a chronic, lifelong, incurable, but treatable, disease affecting at least 360,000 Californians.
(c)
Until the 1970s, people with severe hemophilia
suffered from uncontrollable internal bleeding, crippling orthopedic deformities, and a shortened lifespan. More recently, the production of highly purified blood clotting factors has provided people with hemophilia and other bleeding disorders the opportunity to lead normal lives, free of pain and crippling arthritis.
(d)
The preferred method of treatment of hemophilia today is intravenous injection, or infusion, of prescription blood clotting products several times per week, along with case management and specialized medical care at a federally designated regional hemophilia treatment center.
(e)
Pharmacies and other entities specializing in the delivery of blood clotting products and related equipment, supplies, and services for home use form a growing enterprise in California.
(f)
Timely access to federally
designated regional hemophilia centers and appropriate products and services in the home, including infusion of blood clotting products and related equipment, and supplies and services for persons with hemophilia and other bleeding disorders, reduces mortality and bleeding-related hospitalizations according to the federal Centers for Disease Control and Prevention and the Medical and Scientific Advisory Council of the National Hemophilia Foundation.
(g)
Eligible persons with hemophilia or other bleeding disorders may receive treatment through the Genetically Handicapped Persons Program, the California Children’s Services Program, and the Medi-Cal program.
(h)
For the benefit of persons with hemophilia or other bleeding disorders, the purposes of this article are to do the following:
(1)
Establish standards of service
for entities that deliver blood clotting products and related equipment, supplies, and services for home use.
(2)
Promote access to a full range of essential, cost-effective, lifesaving, blood clotting products and related equipment, supplies, and high-quality services for home use for persons with hemophilia and other bleeding disorders.