As patients clamor for greater access to experimental medicines, a survey released Tuesday finds that just 19 percent of 100 drug makers publicly post policies about their programs for obtaining these drugs, which are known as compassionate use. Moreover, only one of those companies posted information about specific procedures for making requests, and this company did not list any contact information.
More specifically 52 percent of the 25 companies with a market capitalization of greater than $10 billion analyzed by consulting firm Avalere Health disclosed policies on their web sites. By contrast, 14 percent of medium-sized companies — those with market caps between $1.5 billion and $10 billion — posted details and only 4 percent of smaller companies, with market caps of less than $1.5 billion, did the same.
The findings underscore arguments by a growing number of patient advocacy groups and lawmakers that the process for gaining access to experimental medicines is difficult, a complaint that has generated criticism of the US Food and Drug Administration and sparked social media shaming campaigns of some companies. The issue has, in turn, prompted federal and state legislation to alter the process.
