The Right to Try: How the Federal Government Prevents Americans from Getting the Lifesaving Treatments They Need by Darcy Olsen (HarperCollins, 2015); 311 pages.
The highly acclaimed 2013 movie Dallas Buyers Club told the story of Ron Woodroof, who tried desperately to get drugs that might help arrest Acquired Immune Deficiency Syndrome back in the mid 1980s. While there were some drugs thought to help in treating the disease, none had been approved for use in the United States by the Food and Drug Administration. Woodroof and his fellow AIDS sufferers knew that no drug was guaranteed to work, but they wanted to be allowed to try those that might save their lives. The FDA, however, did all it could to block the group from obtaining and distributing the drugs.
In the 1980s, FDA officials held the view that they alone were entitled to decide what medications Americans would be allowed to use. How much has that mindset changed over the subsequent decades? Hardly at all, argues Darcy Olsen in her book The Right to Try. Olsen, president of the Goldwater Institute, makes two strong arguments: first, that the federal bureaucracy is an immense obstacle to Americans who want to obtain drugs that might save their lives, and second, that a partial remedy for that obstructionism is available in state “Right to Try” statutes.
Olsen’s book is partly the telling of stories about Americans who have fought for access to unapproved drugs that might allow them to survive muscular dystrophy, Lou Gehrig’s disease, inoperable cancers, and other maladies. The other part is her presentation of unpleasant facts about the FDA’s regulatory regime. If you believe, for example, that Lou Gehrig’s disease is always fatal, you learn about Ted Harada, who was able to defeat it after battling the FDA to be permitted to try an innovative stem-cell treatment. And if you think that the FDA is run by public-spirited officials who are exclusively dedicated to the lives and well-being of their fellow Americans, Olsen depicts an agency run by haughty bureaucrats who seem to be more concerned about the power of their agency than anything else.
Especially alarming is the evidence she presents showing that doctors and medical researchers worry about the possibility of an FDA backlash that would damage their careers if they do something to arouse an official’s ire.
