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Health Law Changes Threaten Access to Orphan Drugs

By December 9, 2010December 5th, 2023Awareness

A report in today’s New York Times highlights new changes in health law that could stymie cost reductions to ensure access to drugs such as Avastin for children living with orphan diseases – i.e. those conditions affecting fewer than 200,000 Americans (NF affects 100,000 Americans). The changes affect regulations introduced a couple of years ago that would ensure that new drugs be available at 30 to 50% reduced cost for very expensive drug regimes, or to persons with no or insufficient insurance; children’s hospitals were beneficiaries of this since many orphan conditions are identified and first treated in childhood. The law changes may be well received by some pharmaceutical companies who were less supportive of losing revenue through the program; but the changes  have cause serious concerns among clinical care providers; many hospitals if they wish to provide drug regimes are left assuming the increased costs, as reported in this article.