Prevalence of Publicly Available Expanded Access Policies

Clin Pharmacol Ther. 2018 Nov;104(5):1016-1021. doi: 10.1002/cpt.996. Epub 2018 Mar 23.

Abstract

The Food and Drug Administration's expanded access program allows patients with serious or immediately life-threatening conditions to seek access to experimental drugs and treatments from their manufacturers. The 21st Century Cures Act of 2016 sought to increase the transparency of manufacturers' approaches to expanded access by requiring public listing of five key pieces of information about their expanded access programs: 1) relevant contact information, 2) procedures for making requests, 3) general criteria used to evaluate requests, 4) length of time anticipated to acknowledge receipt of requests, and 5) a reference to pertinent information on ClinicalTrials.gov. Manufacturers were given 60 days from the Act's enactment, or until February 11, 2017, to post this information. We reviewed a sample of pharmaceutical manufacturers' expanded access policies to determine what information is readily available to patients online, including assessing whether the information described in the Act is available.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Access to Information / legislation & jurisprudence*
  • Compassionate Use Trials / legislation & jurisprudence*
  • Compassionate Use Trials / standards
  • Databases, Factual
  • Drug Industry / legislation & jurisprudence*
  • Drug Industry / standards
  • Guideline Adherence
  • Guidelines as Topic
  • Health Policy / legislation & jurisprudence*
  • Health Services Accessibility / legislation & jurisprudence*
  • Health Services Accessibility / standards
  • Humans
  • Internet / legislation & jurisprudence
  • Policy Making
  • Time Factors
  • United States
  • United States Food and Drug Administration / legislation & jurisprudence*
  • United States Food and Drug Administration / standards