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The past decade has seen great progress in the improvement of recent drugs for sufferers with genetic disorders, including cystic fibrosis, many lysosomal storage issues (Gaucher illness, Fabry disease, mucopolysaccharidoses, and others) and most recently, Duchenne muscular dystrophy and spinal muscular atrophy (SMA). designee, shall appoint: a consultant of a statewide organization representing hospitals; and a representative of a statewide affiliation completely representing long-term care pharmacists.
Whereas research by privately and publicly funded entities has led to the development of life-saving and life-altering therapies for uncommon and ultrarare illnesses, the extraordinary costs of these treatments might make them unavailable or unaffordable to patients. A national coverage on controlling drug costs and ensuring their affordability is urgently needed.