Tweets about Xarelto ... Zyrtec ... AstraZeneca? Billy Long says 'Yes'

WASHINGTON– When Rep. Billy Long's daughter was diagnosed with Hodgkin's lymphoma, the Springfield Republican did what most Americans now do when confronted with medical issues — he turned to the Web to learn everything he could about the disease and possible treatments.

From WebMD to Wikipedia, the Internet offers an abundance of medical information, some of it reliable, some not.

But even as consumers increasingly go online to gather health information, Long says there's one medical data set that's been left in the dark ages. Drug companies, he notes, are heavily restricted in what information they can share about their products online, particularly on social media sites.

Long and others say that's because of outdated federal regulations that mention lantern slides, file cards, and other anachronisms. Long is pushing legislation that would require the Food and Drug Administration to update its rules and pave the way for drug companies to use Twitter, Facebook, and similar sites to promote their products online.

Under Long's bill, drug companies would be allowed to provide "truthful, introductory information" about medical products online, including a drug's name and its approved use. Any information about the safety or effectiveness of a product could be included in a hyperlink that takes consumers to another website with more detailed data.

Long says it's a long overdue change that will increase consumers' access to reliable information about prescription drugs.

"Nowadays, we consider 'ready access' to be anything we can pull up, as we think of it, on our smartphones and on the Internet and definitely on social media," Long said. "But those who have the best information, the drug manufacturers, cannot communicate information in ways people will see it easiest."

Some consumer advocates, though, say certain online platforms, such as Twitter and Facebook, don't have enough space for pharmaceutical companies to include vital information about a drug's side effects or other risks. That data is required in the drug advertisements Americans now see on television and in print, but it's not clear how many consumers would click on — or even notice — a hyperlink included in a tweet or Facebook post.

"Social media and other short-form means of communication could be abused to give an unbalanced picture of a drug's risks and benefits," said Sarah Sorscher, an expert on consumer health and safety with Public Citizen's Health Research Group, which advocates for safer, more effective drugs and other health care products.

Public Citizen has not taken a position on Long's bill. But Sorscher said federal policymakers need to tread carefully because there's a serious risk that "patients are going to be misled" by online drug ads.

FDA regulations do not bar drug companies from promoting their products online. But the rules require any such posts to include "truthful, accurate, non-misleading, and balanced communications about medical products," no matter what platform they are using. And if a company is not able to include all that information, they are advised to reconsider using that medium.

"The regulations are obviously outdated and are really based on regulating paper communications," said Jeff Francer, a vice president at PhRMA, the drug industry's trade association.

Right now, "there is a gap (in online data about drugs) and that gap is filled by information that's frequently unreliable," Francer said. He said Long's bill would allow drug companies to engage in "meaningful use of modern health care communication tools" and provide "accurate, regulated information" online.

No one disputes the need for trustworthy medical data on the Internet. A 2012 poll by the nonpartisan Pew Research Center found that 72 percent of Internet users had looked online for health information in the past year.

A 2014 study by the IMS Institute for Healthcare Informatics found Wikipedia was the "leading single source of health care information" for patients and health care providers, with almost 50 percent of doctors going online for professional information. Wikipedia is a free online encyclopedia, which anyone can edit.

"Social media channels, like Facebook, like Twitter, YouTube, are increasingly the place people come to obtain information and exchange views about diseases, about treatment options, about specific medicines," Murray Aitken, the executive director of the institute, says in a video released with the report. "It's also the place where health care professionals are going."

Long said by allowing drug companies to more freely communicate online, his bill would "ultimately improve the quality of decision-making for patients and improve treatment outcomes." He said the proposal allows "necessary, truthful information online, which, unlike printed information, can be updated with new data immediately for patients to read."

Besides, Long said, the FDA already uses social media — in much the same way that drug companies are seeking to do.

In a June 22 tweet, for example, the FDA announced it has approved a new antiplatelet drug for use during heart procedures. The tweet included a link to an FDA news release detailing how the new drug works and what its dangers are.

"If the FDA does not consider it to be a good medium to communicate complicated information, then they should stop doing it themselves," Long said.

An FDA spokeswoman declined to comment for this story, saying the agency does not take a position on pending legislation. The FDA has started to update its policies, issuing draft rules relating to how certain products can be promoted online.

"The Internet and various social media platforms have increasingly enabled drug and device manufacturers to more actively engage with consumers and healthcare professionals," the agency states in an introduction to a set of proposed rules. "We look forward to continuing our work in this ever-evolving landscape."

Sorscher said Long is off base in comparing the way the FDA uses social media and the way drug companies might do so.

"Drug companies are inherently conflicted," she said. "Their goal is to sell their products to make a profit — and they have a strong incentive to make their product look attractive."

She said social media platforms may make it easier for companies to "inflate the benefit" of a drug and minimize its downsides. "There needs to be some balance," she said, and the FDA regulations requiring full disclosure of risks help to achieve that.

Francer, the PhRMA official, disputed the idea that drug companies were looking for looser regulations to mislead consumers.

"This isn't about companies not wanting to provide risk information," said Francer. "This is about reframing the way the FDA regulates 21st century communication."

"And I, for one, would rather have my physician getting information from the manufacturer in a regulated way than going to Wikipedia," he said.

Contact Deirdre Shesgreen at dshesgreen@gannett.com or @dshesgreen on Twitter