Off the Record: Only “A Tiny Fraction of the Actual Toll” of Superbug Deaths are being Reported, says Reuters

Tens of thousands of “superbug” deaths in the U.S. are going uncounted because the death certificate omits any mention of the infection. Or because, even when it does, neither state health authorities nor the federal Centers for Disease Control bother to keep track of the numbers, concludes an eye-opening investigative report from Reuters, “The Uncounted: The deadly epidemic America is ignoring.”

On the state level, the discrepancy between the number of superbug deaths reported and the true numbers is staggering. For example, state health records for the period 2003 – 2014 reveal 3,300 deaths caused by superbugs. But the Reuters analysis — working with the CDC’s National Center for Health Statistics’ Division of Vital Statistics to search text descriptions on death certificates to identify relevant deaths — found 180,000 such deaths. (The state-by-state comparison can be seen in the “Through the cracks” graphic, below.)

 

Kelly and Ryan Breaux lost their 4-year old daughter Emma, to MRSA. The death certificate blamed the flu.

Kelly and Ryan Breaux lost their 4-year old daughter Emma, to MRSA. The death certificate blamed the flu.

 

On the federal level, the CDC estimates that about 23,000 people die each year from 17 types of antibiotic-resistant infections and that an additional 15,000 die from Clostridium difficile, a pathogen linked to long-term antibiotic use. But even the CDC concede they don’t have the numbers right.

For example, Michael Craig, the CDC’s senior adviser for antibiotic resistance coordination and strategy, said the agency, pressured by Congress and the media to produce “the big number,” settled on “an impressionist painting rather than something that is much more technical.” Describing the estimates to Reuters, CDC officials used words like “jerry-rig,” “ballpark figure” and “a searchlight in the dark attempt.” Thus, say Reuters, you’re “introducing so much statistical uncertainty into the numbers as to render them useless for the purposes of fighting a persistent public health crisis.” And so “in the absence of a unified national surveillance system, the onus of monitoring drug-resistant infections and related deaths falls on the states” … where we have a documented discrepancy of 3,300 reported vs. 180,000 actual, deaths.

The reasons for the huge undercount aren’t pretty. For instance, according to Reuters, “counting deaths is tantamount to documenting your own failures. By acknowledging such infections, hospitals and medical professionals risk potentially costly legal liability, loss of insurance reimbursements and public-relations damage.” And so hospitals will even hide the true numbers of infections:

 

At a conference last year, hospital infection-control specialists told CDC officials that medical staff and internal review boards sometimes blocked them from reporting infections as required by state law or by the Centers for Medicare & Medicaid Services (CMS), which reduces payments to hospitals for preventable infections and high infection rates.

The specialists said medical staff sometimes were discouraged from testing patients with clear signs of infection – one of several tactics they said staff used to get around reporting rules.

 

Getting the numbers right matters because you need to know when, where, and how many deaths are occurring and who is most at risk. That determines where money and manpower — e.g., for basic research, drug development, and public health campaigns — are needed the most. The way to do it, say industry experts, is to copy the HIV/AIDS model.

Within three years of the first AIDS cases in 1981, most state health departments required hospitals and physicians to report and name each new diagnosis. Surveillance systems soon evolved to capture each AIDS-related death. Health officials used that information to direct resources to the hardest-hit areas and study how the disease was spreading. As a result, activism swelled, helping to attract millions of dollars for public education campaigns and drug development. The number of infections then peaked at about 78,000 in 1993 and rapidly fell thereafter. In 2013, the latest year for which numbers are available, about 13,000 people died with AIDS. So far, drug-resistant infections haven’t prompted anything like that sort of broad mobilization.

Until we adopt such a model we know that we will continue to have avoidable tragedy’s like that of 4-year old Emma Grace Breau. Reuters reports:

 

She contracted an infection shortly after her birth at the Lafayette General Medical Center in Lafayette, Louisiana, in 2005. Emma had a MRSA infection. She survived, but with permanent damage to her heart, lungs and one leg. Three and a half years later, Emma was in Florida to have her leg repaired when she came down with swine flu. It was too much for her heart and lungs. After a six-week battle, she died at Miami Children’s Hospital just shy of her fourth birthday. Her death certificate blamed flu-related pneumonia. Including MRSA as a cause of death ‘was not considered,’ said Dr Sharon Skaletzky, who was at Miami Children’s at the time and signed the death certificate … Her medical expenses alone eventually exceeded $4 million for repeated hospitalizations due to complications from her MRSA infection. The family sold their home, truck and other possessions to stay afloat while she underwent multiple operations.

 

 

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