To kill or to cure: media faces a new dilemma over medical misinformation

A PHARMACEUTICAL company comes up with a new treatment. Puts it on the market. Doctors prescribe it. It becomes hugely popular. It earns enormous amounts of money for its manufacturers.

Then lethal side effects surface and it emerges that the drug company knew about them. It was aware, for a while, that hundreds of people have become very ill as a result of taking the tablets, and a fair few have actually popped their clogs. But the drug company has convinced itself that these are but anomalies, and so does not feel an overwhelming need to tell the regulators or stick one of those off-putting health warnings on each package. They keep it a secret. Their share price stays buoyant.

Eventually, of course, it stops being a secret. When this happens, as it has, more than once in recent days, the drug company gets smacked around by the FDA and other authorities, gets class action lawsuits in droves, gets fined, gets more column inches of godawful coverage than it could ever have imagined, pays out millions if not billions in damages, and is likely to take a hit on its share value.

Public sympathy for its travails is limited, because people feel the manufacturer had to have known that such egregious concealment of data was going to damage the public good and kill off a proportion of the citizens.

Transparency and openness are the way to go. The public’s right to know is paramount. The more people know, the more in control they are. Good information flow saves lives and contributes to general well-being.

In fact, the reverse can be true. Some transparency is dangerous.

Take the man who was cured, all by himself, of HIV. Andrew Stimpson is a 25-year-old from Scotland. The great news, splashed across international media, was two-fold. The first was that he was cured. Not just that he was in good shape because of taking the ever-changing cocktail of incredibly expensive medications that keep most HIV-infected people alive. No. He was cured. Not a virus to be found in him anywhere.

The second aspect to the good news was that the cure had been effected by the ingestion of no more than a few vitamins. Vitamins were the fixer-upper. All that was required was a wee bit of research into precisely which vitamins he’d been taking, plus another wee bit of research into Andrew’s genetic make-up and AIDS would be history. Sad history, since it’s now killed more than three million people. But history. All hail Andrew. The job was Oxo. We were sound as a pound.

The job stopped being Oxo pretty quickly, when the hospital attended by our hero said that in their view, he hadn’t been cured at all. He’d never had it in the first place. The hospital agree that false positive tests for HIV were rare. Very rare. One in a million rare. But they happen. The hospital believe Andrew may have encountered an HIV virus or two and had a lively immune response that triggered a positive test, but actually infected? Not likely. Certainly not proven. Andrew Stimpson’s 15 minutes of fame constitutes a lot more than a disappointment.

It contributes to a watering-down, in the public mind, of the threat of the HIV virus.

The head of one of the major AIDS charities in Britain likened the damaging effect of the media coverage of the Scotsman’s ‘cure’ to the bad outcome of earlier stories promising that a new HIV vaccination was in the way.

“They led people to believe that a cure was just around the corner,” she said, “when, in reality, vaccine development is at least ten to 15 years away.”

The cumulative effect of pointlessly positive but unfounded coverage of HIV is to persuade the public that prevention isn’t that important any more.

In the short term, the HIV-infected can rely on cocktails of drugs that have slowed down the way the disease progresses by 85%, goes this line of thought, and in the medium-term, a vaccine will come out which will prevent AIDS altogether, even if Andrew Stimpson’s vitamins no longer hold out the promise they held just a week ago.

The problem is that when people get casual about HIV, they get just as casual about the behaviours that spread it.

Unsafe sex means that the uninfected get infected, which is bad enough. But it has another, newer consequence.

IN Britain, research indicates that because people are no longer afraid of AIDS, some people who know they are infected with HIV and are on the drug cocktail to combat the infection are having unsafe sex. When an infected person has unsafe sex with an uninfected person, they can not just pass on the virus, but, in a lethal double-whammy, also pass on resistance to the HIV drug treatment.

Nearly a fifth of new HIV patients are resistant to one of the life-preserving drugs before they even start treatment. The gains made in recent years in treatment of AIDS could be washed away by this growing resistance to the drugs being used.

The sexual behaviour of both partners - the one already under treatment and the one not currently infected - is the responsibility of the individuals involved. But the attitude leading to that behaviour has been contributed to by the way the data about HIV is managed by media. It isn’t a case of telling the truth without paying attention to the consequences.

The Stimpson story was a case of telling a half-truth with no attention whatever to the consequences.

We rightly punish drug companies when their concealment of data COULD cost hundreds of lives. But we don’t punish those who disseminate misleading material that WILL cost thousands of lives.

The traditional media pride in the value of simply getting information out there has to be questioned, when what is getting out is MISinformation and when the cumulative effect of its distribution is mass misunderstanding leading to behaviour which kills.

When we talk, in this country, about the need for a Press Council, the cases which come to mind are stories about famous individuals wounded in their dignity, privacy or reputation by sensational or libellous coverage.

We don’t assume we need a Press Council to control coverage which leads to illness, death and massive unnecessary expenditure of taxpayers’ money. A newspaper or TV station publishing something provably true which could nonetheless damage an individual tends to get a bit trembly in the knees.

But a newspaper or TV station publishing something provably UNtrue which could indirectly kill hundreds of thousands of individuals has no worries at all. The bigger the kill, the smaller the responsibility.

The old rule about freedom of speech was that it didn’t include yelling “Fire!” in a crowded theatre, when it could create a panic that would kill people.

Maybe it’s time we updated it to preclude yelling “Cure!” in a newspaper headline, when it could create a complacency that would kill a lot more people.