Every day, quick bursts of highly targeted medical information are pumped into the Twitterverse, oblivious to most of us goof-offs blithely in search of the latest iPad reviews and Justin Bieber gossip. Lucky us. But, for the relatively small number of people who suffer from, say, the rare medical condition of Erythropoietic protoporphyria, where even the slightest exposure to sunlight can trigger spasms of intense pain, these bulletins are eagerly anticipated. One 140-character bulletin could hold the clues to a new treatment and a little relief.

Australian drugmaker Clinuvel has built a Twitter feed to cater to this small community who suffer from EPP, as it’s called. The pharmaceutical company is trying to get regulatory go-ahead for its drug, afamelanotide. Yesterday, it reported to its 267 Twitter followers that the Food and Drug Administration finally granted it approval to proceed with afamelanotide clinical trials in the U.S. It may still be years before it hits the market, of course, in the U.S.

Not long ago drug makers would hold off on discussing drugs in development until regulatory approval seemed imminent. Not so today. The public is hearing about drugs barely out of the labs. And it’s not just small drug makers likeClinuvel. Swiss pharma giant Novartis is an enthusiastic Tweeter, regularly sending out dispatches about drugs in the R&D stage, or drugs only approved overseas.

What makes this more remarkable is that Tweeting drugmakers (they are also active on Facebook too) may be breaking the rules in telling us about potential cures long before they get the green light. That’s right. To regulators, too much information can be a bad thing for the consumer.

It’s left the pharmaceuticals industry stuck in an odd bind. Millions of people may be scouring the Net daily for details on potential new cures, but thatdoesn ‘t mean those working on a breakthrough can let them in on the latest results. In this age of surfing-for-wellness-tips on social networks and niche medical communities, regulators in the United States and Europe are literally trying to turn back the clock to keep the information flow about new drugs in the pipeline to an easily controllable trickle.

Meanwhile, spammers and dubious drug vendors, not shackled by such restrictions, pound the net daily with false medical claims.

Big Pharma of course is not alone. Financial regulators have been unwilling to confront the ramifications of how social media is already transforming the way companies can communicate with the public. The Security and Exchange Commission and, in the United Kingdom, the Financial Services Authority, repeatedly ignore calls from companies to relax the rules against blogging, Tweeting and posting market-moving information even as investors are combing the same channels looking for detail.

Last year, in a belated attempt to address this imbalance in the pharmaceuticals industry, the Food and Drug Administration convened a series of meetings with industry executives to try to reach some agreement on how social media could be used by BigPharma to market more effectively their drugs to a demanding public. So far, the process has been bogged down by sticking points over what can and cannot be disclosed – for example, should all the potential harmful side effects of a new medication be revealed in a single Tweet? And what about guidance on how to set up aFacebook fan page for some new HIV drug?

Not surprisingly, the medical community is exasperated. Joel Selzer, the co-founder of the physicians online network Ozmosis has issued a call to action demanding the regulators resolve this matter soon. “While holding the public hearings was a great step forward, the FDA needs to augment its social media expertise and it needs to do so quickly,” he argues.

The solution here need not be a complicated one. Instead of focusing on what cannot be communicated, what about trying the opposite approach? What about putting all the information – the promising, the worrisome and the unknown – out there in one place for a discerning public to consider? Regulators are always a few steps behind new technological innovations. That’s a given. But in this case it’s not the technology that needs to be better understood by regulators, it’s the public. Consumers are already combing patient forums, online support groups or physician networks to find and relay medical advice to others. Why deny them this?

Meanwhile, drug makers like Clinuvel see this revolutionary shift in the patient-doctor dynamic and are joining this discussion, not waiting for regulators to decide on the industry standard for aPharma Tweet or Facebook page. The clock is ticking. As one member of a Facebook Porph yria support group (where EPP is at times discussed) posted this week, “I’m 34 and just been diagnosed with HCP. Does anyone know of any specialists that treat porphyria in Canada? I can’t find anyone. Thanks for your help.”