NCPA - National Center for Policy Analysis


May 19, 2009

At a time when terminally ill patients have more access to medical research than ever before, and perhaps a deeper conviction in its ability to cure them, many are campaigning for the chance to be treated with drugs whose safety and effectiveness is not yet known, says the New York Times.

But even as advances in areas like stem cells and genetics generate greater hope for experimental therapies, there is little consensus on how and when to provide them to dying patients whose lives could be prolonged, or shortened, by trying them.

Insurance companies typically do not pay for drugs that are part of a not-quite-finished scientific process.  But even affluent families find themselves pleading simply for the right to buy a drug, with institutions and individuals that often seem to them to have no logic -- and sometimes no heart, says the Times:

  • Doctors worry about instilling false hope and doing unnecessary harm.
  • Companies fear damaging a drug's chance of winning approval from the Food and Drug Administration if a patient suffers a bad reaction.
  • The FDA itself does not want patients to bypass clinical trials, which require that some participants receive a placebo to determine reliably whether a drug works.

Some patient advocates are lobbying for laws and policies that would sanction what has become known as the "compassionate use" of experimental drugs by seriously ill patients who have run out of other options.  But for now, each appeal to the guardians of untested drugs is an improvisation, in which success relies on connections, determination, mercy and luck, and the hope of prevailing can sometimes eclipse the hope held out for the drug itself, says the Times.

Source: Amy Harmon, "Months to Live; Fighting for a Last Chance at Life," New York Times, May 17, 2009.


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