by Emma Schwartz

We began our research into a new kind of deadly antibiotic-resistant bacteria with what seemed like a basic question: How many people get these hard to treat infections each year and where do they occur?

It turned out we weren’t the only ones asking that question.

For nearly 15 years, government reports have highlighted the lack of surveillance data of antimicrobial resistance. A 1999 Government Accountability Office report noted how “no systematic information is available about deaths from diseases caused by resistant bacteria.” In 2000, then-director of the Centers for Disease Control and Prevention, Jeffery Koplan, told Congress that, “coordinated national antimicrobial resistance surveillance is needed.” The following year, in 2001, the government-wide task force created to tackle antimicrobial resistance reiterated the need for national surveillance in its plan for action.

Fast-forward a decade later, and little had changed, prompting a warning from the GAO in 2011 that CDC’s efforts to address the problem of antibiotic resistance “will be impeded” without “more comprehensive data.”

That’s a concern many infectious disease specialists still have today.

“It is frankly embarrassing that we as a country do not know where resistance is occurring, how bad the problem is for various organisms or who’s using what antibiotics when,” says Brad Spellberg, an infectious disease doctor at Harbor-UCLA Medical Center.

After all, the European Union started tracking the rise of resistance across member states in 1999.

So why has it been so difficult for the United States to come up with a system?

Part of the problem is that there’s been very little attention at the highest levels of government to antibiotic resistance. Although Congress created an Interagency Task Force on Antimicrobial Resistance in 1999, the committee hasn’t put together the “coordinated, national surveillance plan” its own action plan recommended in 2001. The task force has no dedicated staff and when we asked the CDC to tell us about it, we learned that the body has only met in person 11 times.

Government officials also say that collecting the data is not simple. Unlike Europe, the United States has a very diffuse and disconnected health care system – making data sharing and gathering particularly cumbersome.

“Antibiotics are used commonly; they’re used in a wide variety of settings. It’s not easy to gather this information,” says Arjun Srinivasan, the CDC’s top expert on antimicrobial resistance. “If it was, I think we would certainly have it by now.”

The CDC does not have the authority to require hospitals to report this data. Only states (or sometimes local public health departments) can, yet most states still haven’t required hospitals to report any data.

Some states have made progress with new reporting requirements, including with the type of bacteria the CDC is calling a “nightmare” because it is resistant to our most powerful antibiotics. Before this year, only six states required hospitals to report these cases, but after a March CDC warning, five more states, including New York, put reporting requirements on the books.

Some hospitals keep track of resistant bacteria internally, even if they don’t have to report them to the government. But many hospitals also face major technical hurdles in identifying antibiotic-resistant bacteria because they lack the lab equipment to test for the specific genes that cause some of the hardest to treat cases.

And few hospitals want to talk publicly about problems with antibiotic-resistant infections in health care facilities for fear that it might scare away paying patients.

“There is sort of a conspiracy of silence, not because anybody is doing anything evil or bad or wrong but because ‘I don’t want to be the sacrificial lamb that first opens the conversation,’” says Spellberg. “’Let the other hospital bring it up.’”

Despite the challenges, the CDC would like to see more comprehensive data. “We absolutely need to know more not just about antibiotic resistance, but also about antibiotic use,” says Srinivasan.

To that end, CDC officials recently came up with the first ever estimates about the incidence of resistant infections, using a 2011 survey conducted in 10 states. That study estimated that 2 million people get a resistant infection each year and that at least 23,000 die from them.

The CDC is also in the process of setting up an electronic system to track antibiotic use and resistance patterns in hospitals across the country. To participate, hospitals must have an electronic medical record system and must pay thousands of dollars to build a digital interface to send the information to the CDC. As of October 2013, only the part tracking antibiotic use has launched and only 38 hospitals are participating in the system. The agency says it plans to start tracking resistance patterns next year.

But many public health officials believe this is not enough. The CDC system is voluntary and without a more comprehensive or even mandatory reporting, they worry that the United States won’t have a clear picture of what’s happening on the ground.

A bill on antibiotic resistance, called the STAAR Act, would require collection of data on antibiotic use and create a sentinel surveillance system at 10 designated sites to look for emerging antibiotic resistance patterns. It’s been introduced at virtually every session since 2006, but never passed.

For now, Barry Kreiswirth, a researcher on antibiotic resistance at the Public Health Research Institute in Newark, NJ, says one thing is clear: “We’re not putting enough money into antibiotic resistance. There’s no question about it.”