Readers Want Reforms of Orphan Drug Act


Like many other others, they see orphan drugs as being something of a problem child in American health care these days. But Managed Care readers largely agree on several reform notions designed to lower prices and limit market exclusivity.

More than half (53%) of the 111 respondents to an online survey rated orphan drugs as having a major impact on rising drug costs, although there was also fairly wide (if mild) agreement that the 1983 Orphan Drug Act has been successful in creating incentives to develop remedies for rare diseases.

How would you rate the impact of the cost of orphan drugs on rising drug costs?

Scale 1–7, 1=Not at all impactful, 7=extremely impactful

The assertion that the pharmaceutical industry is gaming the orphan drug approval process was met with approval: 64% of the respondents strongly agreed with that statement. And, not surprisingly, a similar proportion agreed with ideas to change the Orphan Drug Act that are supposed to curb the alleged gaming, including restrictions or elimination of “salami slicing” diseases into subsets to get orphan drug status and taking away orphan drug status if sales for a drug reached a certain threshold—for example, the $1 billion blockbuster mark.

What is your opinion on the following statements describing these proposed reforms to the 1983 Orphan Drug Act?

Scale 1–9, 1=Definitely does not need reform, 5=Neutral, 9=Definitely needs reform

Rate your agreement or disagreement with the following statements about orphan drug pricing:

Scale 1–7, 1=Strongly disagree, 7=Strongly agree

Source for all charts: MediMedia Research

Medimedia Research conducted this online survey of Managed Care readers from May 2 to May 11. MediMedia Research is a part of MediMedia Managed Markets, an ICON plc company, and the owner of Managed Care.

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