Friday 14 August 2015

Orphan Drug Act

Rare diseases (RDs) are significant public-health issue and they pose a challenge to the medical community. These rare diseases are called ‘health orphans’, because research and developments have neglected them for years due to many RED challenges. Amendments were made to the existing law in the 1960s, mandating that every drug must be proven to be safe and effective through ‘adequate and well-controlled studies’ before getting market approval. Then raising drug development cost ended in drugs for small disease populations being ‘orphaned’ by many top drug companies.

Congressional Findings for the Orphan Drug Act
(1) There are many diseases and conditions, such as Myoclonus, Huntington's disease, ALS (Lou Gehrig's disease), muscular dystrophy and Tourette syndrome, which affect a few individuals residing in the United States that the diseases and conditions are regarded as rare in the United States
(2) Satisfactory number of drugs for treatment of many of such diseases and conditions has not been developed
(3) Drugs for such diseases and conditions are generally referred to as "orphan drugs"
(4) Because very few individuals are affected by such rare diseases or conditions, a pharmaceutical company which develops an orphan drug may expect the drug to generate moderately small sales when compared with the cost of developing the drug and consequently to incur a financial loss
(5) There is reason to believe that some promising orphan drugs will not be developed unless changes are made in the applicable Federal laws to reduce the costs of developing such drugs and to provide financial incentives to develop such drugs; and it is in the public interest to provide such changes and incentives for the development of orphan drugs.


The Orphan Drug Act began many years ago and now, many believe that this is not the best use of resources. Attend the webinar “Orphan Drugs: The Conundrum” by Marybeth Regan, to learn more about the topic.

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