The pharmaceutical industry employs an army of media relations staff who relentlessly hound reporters when they want to publicize an announcement. Mountains of information are made available, the world’s top doctors drop everything to talk, and patients are at the ready to reveal the most personal medical information on national television.
But when a reporter works on a drug story that is not part of one of these carefully developed scripts, it’s a different experience.
Suddenly, no one from that vast army is available to talk. Interviews are refused. Lawyers are called. Questions must be put into writing, and many of them are ignored. The responses that do arrive often take days, come from low-level people with no direct knowledge of events and are couched in noncommittal phrases like, “It’s my understanding.”
That is what I encountered while reporting my column on how the HIV drugs that have saved so many lives are now being used for other illnesses and health concerns. It’s a controversial idea, in part because thousands of Americans who are infected with HIV apparently can’t get the drugs — a situation that has worsened since the recession hit.
Is it unethical to give these drugs away to experimentally treat other ailments while those whom we know the drugs can help go without? Are priorities out of whack?
While some in the drug industry no doubt don’t want this controversy played out in the media, pharmaceutical companies also have very practical reasons for being less than forthcoming.
Laws restrict what drug makers can say about their products. In fact, companies that are seen pushing a medicine for an unapproved purpose can be fined hundreds of millions of dollars. Some past cases involving the questionable promotion of drugs have been staggering: Pfizer has paid more than a billion dollars in fines; Novartis settled one case for $422 million.
So it’s no wonder that when discussing the idea of using HIV drugs to treat something other than HIV, words are chosen carefully, or not uttered at all.
But while the stakes are high for drug companies, some patients will argue that their concerns are even more compelling. People who suffer from chronic fatigue syndrome — which some believe is linked to a retrovirus — are trying HIV drugs to treat their condition. This is not an approved use, and questions have been raised about some of the science involved.
Still, the patients’ willingness to try the drugs is understandable. Some have lived with chronic fatigue for decades — and it wasn’t too long ago that they faced ridicule from skeptics in the medical establishment who said there was no such illness and that those who complained simply had a bad case of lazy.
So some people with chronic fatigue syndrome who want easy access to medications (and a lot more research) are incredulous when they see HIV drugs being tested for uses like protecting those at high risk from becoming infected with HIV.
“They give away the drug for free to whores, but not to us?” said one long-time chronic fatigue patient.
Emotions are high, the need is intense, and drug companies — understandably — are very cautious. This is a script that’s still being written.
Not a member yet? Register Now
You must sign in to post a comment.