this post was submitted on 24 Sep 2026
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Orphan drugs cost millions per patient, sorry your ignorant, but this is reality, y'all:
Skyclarys (omaveloxolone) has a wholesale list price of approximately $370,000 to $399,180 per year
Zolgensma has a US list price of about $2.1 million for a single, one-time treatment.
Lenmeldy – $4.25 million (Metachromatic leukodystrophy)
Kebilidi – $3.95 million (AADC deficiency)
Hemgenix – $3.5 million (Hemophilia B)
Elevidys – $3.2 million (Duchenne muscular dystrophy)
Lyfgenia – $3.1 million (Sickle cell disease)
Skysona – $3.0 million (X-linked adrenoleukodystrophy)Zynteglo – $2.8 million (Transfusion-dependent beta thalassemia)
– ~$1.51M to $1.56 million per year (Generalized lipodystrophy)
Danyelza – ~$1.39M to $1.44 million per year (High-risk neuroblastoma)
Zokinvy – ~$1.30M to $1.44 million per year (Hutchinson-Gilford Progeria Syndrome)
Miplyffa – ~$1.30 million per year (Niemann-Pick disease type C)
Kimmtrak – ~$1.17 million per year (Metastatic uveal melanoma)
Folotyn – ~$1.01 million per year (Peripheral T-cell lymphoma)
Demser – ~$960k to $1.20 million per year (Pheochromocytoma)
Brineura – ~$916k to $1.02 million per year (CLN2 Batten disease)
Spinraza – ~$900,000 for the first year, then ~$450,000 annually after (Spinal muscular atrophy)
Blincyto – ~$905,000 per year (Acute lymphoblastic leukemia)Ravicti – ~$695,970 per year (Urea cycle disorders)