'Superbug' scourge spreads as U.S. fails to track … · 'Superbug' scourge spreads as U.S. fails...

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1/1/17, 12’19 PM 'Superbug' scourge spreads as U.S. fails to track rising human toll Page 1 of 17 http://www.reuters.com/investigates/special-report/usa-uncounted-surveillance/ MICROSCOPIC MENACE: Potentially deadly multidrug-resistant strains of Pseudomonas aeruginosa can infect hospital patients through ventilators and other devices. REUTERS/Courtesy of Centers for Disease Control and Prevention (CDC) ‘Superbug’ scourge spreads as U.S. fails to track rising human toll By Ryan McNeill , Deborah J. Nelson and Yasmeen Abutaleb Filed Sept. 7, 2016, 2 p.m. GMT Fifteen years after the U.S. declared drug-resistant infections to be a grave threat, the crisis is only worsening, a Reuters investigation finds, as government agencies remain unwilling or unable to impose reporting requirements on a healthcare industry that often hides the problem. RICHMOND, Va. – Josiah Cooper-Pope, born 15 weeks premature, did fine in the neonatal intensive care unit for the first 10 days of his life. Then, suddenly, his tiny body started to swell. Overnight, he grew so distended that his skin split. His mother, Shala Bowser, said nurses at Chippenham Hospital in Richmond, Virginia, told her that Josiah had an infection and that she should prepare for the worst. On Sept. 2, 2010, she was allowed to hold him for the first and last

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MICROSCOPIC MENACE: Potentially deadly multidrug-resistant strains of Pseudomonas aeruginosa can infect hospital patients through ventilators and other devices. REUTERS/Courtesy ofCenters for Disease Control and Prevention (CDC)

‘Superbug’ scourge spreads as U.S. failsto track rising human tollBy Ryan McNeill, Deborah J. Nelson and Yasmeen Abutaleb Filed Sept. 7, 2016, 2 p.m. GMT

Fifteen years after the U.S. declared drug-resistantinfections to be a grave threat, the crisis is only worsening, aReuters investigation finds, as government agencies remainunwilling or unable to impose reporting requirements on ahealthcare industry that often hides the problem.

RICHMOND, Va. – Josiah Cooper-Pope, born 15 weeks premature, did fine in the neonatalintensive care unit for the first 10 days of his life.

Then, suddenly, his tiny body started to swell. Overnight, he grew so distended that his skinsplit.

His mother, Shala Bowser, said nurses at Chippenham Hospital in Richmond, Virginia, toldher that Josiah had an infection and that she should prepare for the worst. On Sept. 2, 2010,she was allowed to hold him for the first and last

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time as he took his final breath. He was 17 daysold.

What no one at the hospital told Bowser was thather newborn was the fourth baby in the neonatalunit to catch the same infection, methicillin-resistant Staphylococcus aureus,! better-knownas MRSA. It would sicken eight more, recordsshow – nearly every baby in the unit – before theoutbreak had run its course.

The shock of her son’s death came back to herwhen, after being contacted by Reuters earlier this year about the outbreak, Bowser went toVirginia’s Division of Vital Records to get a copy of Josiah’s death certificate. The cause ofdeath: “Sepsis due to (or as a consequence of): Prematurity.” " Sepsis is a complication ofinfection, but there was no mention of MRSA.

“My heart hurts,” Bowser said, sobbing. “I saw what this did to him. And then they just threwa bunch of words on the death certificate.”

According to their death certificates, Emma Grace Breaux " died at age 3 from complicationsof the flu; Joshua Nahum died at age 27 from complications related to a skydiving accident;and Dan Greulich succumbed to cardiac arrhythmia at age 64 after a combined kidney andliver transplant.

In each case – and in others Reuters found – death resulted from a drug-resistant bacterialinfection contracted while the patients were receiving hospital care, medical records show.Their death certificates omit any mention of the infections.

Fifteen years after the U.S. government declared antibiotic-resistant infections to be a gravethreat to public health, a Reuters investigation has found that infection-related deaths aregoing uncounted, hindering the nation’s ability to fight a scourge that exacts a significanthuman and financial toll.

Even when recorded, tens of thousands of deaths from drug-resistant infections – as well asmany more infections that sicken but don’t kill people – go uncounted because federal andstate agencies are doing a poor job of tracking them. The Centers for Disease Control andPrevention (CDC), the go-to national public health monitor, and state health departmentslack the political, legal and financial wherewithal to impose rigorous surveillance.

As a result, they miss people like Natalie Silva of El Paso, Texas, " who contracted a MRSA(pronounced MER-suh)! infection after giving birth. She died from infection-relatedcomplications nearly a year later, at age 23.

Silva’s sisters fought a successful battle to get the hospital to cite MRSA on her deathcertificate. Still, her death went uncounted: The Texas health department doesn’t track deathslike hers from antibiotic-resistant infections, and neither does the CDC.

As America learned in the battle against HIV/AIDS, beating back a dangerous infectiousdisease requires an accurate count that shows where and when infections and deaths areoccurring and who is most at risk. Doing so allows public health agencies to quickly allocate

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UNHAPPY SURPRISE: Shala Bowser (top), with herdaughter Damyiah, said her “heart hurt” when she foundout her son Josiah Cooper-Pope’s death certificate didn’tmention the MRSA infection that killed him. She keeps amemory box (above) that includes a photo of the onlytime she was able to hold her son before he died at 17days old. REUTERS/Chet Strange

money and manpower where they are needed. But the United States hasn’t taken the basicsteps needed to track drug-resistant infections.

“You need to know how many people are dying of a disease,” said Ramanan Laxminarayan,director of the Center for Disease Dynamics, Economics & Policy, a Washington-based healthpolicy research organization. “For better or worse, that’s an indicator of how serious it is.”

Drug-resistant infections are left off death certificates for several reasons. Doctors and otherclinicians get little training in how to fill out the forms. Some don’t want to wait the severaldays it can take for laboratory confirmation of an infection. And an infection’s role in apatient’s death may be obscured by other serious medical conditions.

There’s also a powerful incentive not to mention a hospital-acquired infection: Countingdeaths is tantamount to documenting your own failures. By acknowledging such infections,hospitals and medical professionals risk potentially costly legal liability, loss of insurancereimbursements and public-relations damage.

Doctors and other clinicians also may simply notunderstand the importance of recording theinfections. Sandy Tarant, the doctor who signedJosiah Cooper-Pope’s death certificate, told Reutersthat he thought “it didn’t matter” whether he cited aMRSA infection.

Legally, he’s right. Most states don’t require doctorsto specify whether MRSA was a factor in a death.Washington and Illinois are exceptions.

State laws govern how death certificates are filledout. Most use a model law that mandates financialpenalties for anyone who deliberately makes a falsestatement on the document, said PatriciaPotrzebowski, director of the National Association for Public Health Statistics andInformation Systems. The penalties are often small and rarely enforced, she said.

“AN IMPRESSIONIST PAINTING”

Not even the CDC has a good handle on the extent of the problem. The agency estimates thatabout 23,000 people die each year from 17 types of antibiotic-resistant infections and that anadditional 15,000 die from Clostridium difficile,! a pathogen linked to long-term antibioticuse.

The numbers are regularly cited in news reports and scholarly papers, but they are mostlyguesswork. Reuters analyzed the agency’s math and found that the estimates are based on fewactual reported deaths from a drug-resistant infection.

The agency leaned heavily on small samplings of infections and deaths collected from nomore than 10 states in a single year, 2011. Most didn’t include populous areas such as Florida,Texas, New York City and Southern California.

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From those small samples, the CDC then extrapolated most of its national estimates,introducing so much statistical uncertainty into the numbers as to render them useless for thepurposes of fighting a persistent public health crisis.

Describing the estimates to Reuters, even CDC officials used words like “jerry-rig,” “ballparkfigure” and “a searchlight in the dark attempt.”

Michael Craig, the CDC’s senior adviser for antibioticresistance coordination and strategy, said theagency, pressured by Congress and the media toproduce “the big number,” settled on “animpressionist painting rather than something that ismuch more technical.”

In a statement emailed to Reuters, CDC officials saidthey released the 2013 estimates report “despite itslimitations because of our profound concern aboutthe seriousness of the threat.” The agency said it isworking on improving its estimates.

The numbers of uncounted deaths from drug-resistant infections “speak to what can happen whenwe don’t allocate the necessary resources to bolster… our public health safety network,” said SenatorSherrod Brown. “When we see discrepancies in reporting, are unable to finance a workforce tomonitor infections, and can’t even soundly estimate the number of Americans that die from[antibiotic-resistant infections] each year, we know we have a problem.”

The Ohio Democrat recently introduced a bill that would require the CDC to collect more andbetter data on superbug infections and death rates.

In the absence of a unified national surveillance system, the onus of monitoring drug-resistant infections and related deaths falls on the states. A Reuters survey of the healthdepartments of all 50 states and the District of Columbia found wide variations in how theytrack seven leading “superbug” infections – if they do so at all.

Only 17 states require notification of C. difficile infections, for example, while just 26 statesand Washington, D.C., do the same for MRSA. Fewer than half require notification ofinfections by carbapenem-resistant Enterobacteriaceae (CRE),! a family of pathogens thatthe CDC has deemed an “urgent threat.” CRE gained notoriety when more than 200 peoplewere sickened through contaminated medical scopes in hospitals from 2012 to 2015.

Twenty-four states and the District of Columbia – an area comprising 3 of every 5 Americans– said they do not regularly track deaths due to antibiotic-resistant infections. In contrast, all50 states require reporting of AIDS-related deaths. Deaths from hepatitis C and tuberculosisare also closely tracked.

States that said they do track deaths generally do so for only a few types of drug-resistantinfections and not consistently. In the survey, they reported a combined total of about 3,300deaths from 2003 to 2014.

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The deadly epidemic America is ignoring

The UncountedA REUTERS INVESTIGATION

That’s a tiny fraction of the actual toll: A Reuters analysis of death certificates found thatnationwide, drug-resistant infections were mentioned as contributing to or causing the deathsof more than 180,000 people during the same period. To conduct the analysis, Reutersworked with the CDC’s National Center for Health Statistics’ Division of Vital Statistics tosearch text descriptions on death certificates to identify relevant deaths.

Among the states that don’t require reporting of superbug deaths is California, the nation’smost populous state. The Reuters analysis identified more than 20,000 deaths linked to drug-resistant infections during the 12-year period, the most of any state. A health departmentspokeswoman said the state legislature authorized the department to be notified of infections,but not deaths.

Tennessee doesn’t require notification of deaths, either. The Reuters analysis found morethan 5,500 deaths linked to superbugs there, more than half of them MRSA-related.

“We know we have a problem with MRSA in Tennessee,” said Marion Kainer, the state’sdirector of antimicrobial resistance programs. Requiring hospitals to report deaths is morethan the department can take on right now, she said. “We have a significant problem gettingclinicians to report just the disease,” she said. “It’s grossly under-reported.”

The totals from the Reuters analysis also indicate that the problem is getting worsenationwide, as the number of deaths from drug-resistant infections more than doubled from8,600 in 2003 to about 16,700 in 2014. (Some of that increase could be the result ofclinicians’ increased awareness of the infections.)

Death certificates aren’t a perfect measure. They can be wrong: Cause of death often is ajudgment call by clinicians, who may blame a drug-resistant infection in error. More likely,they undercount drug-resistant deaths, as cases like that of Josiah Cooper-Pope show. Justhow far under is impossible to know.

But there are clues: Connecticut, with a grant from the CDC, is the only state that closelymonitors MRSA deaths. It logged 2,084 deaths from drug-resistant infections from 2003 to2014, all but 10 from MRSA. That’s nearly twice the number of deaths from MRSA in the statethat Reuters found in its death certificate analysis.

One reason for the disparity is that the state’s count includes anyone who died with MRSA,even if it wasn’t the cause of death, said Dr Matthew L. Cartter, Connecticut’s epidemiologist.He also said death certificates may undercount MRSA deaths because the physician may cite ageneral infection-related condition – death due to sepsis, for example – without mentioningthe actual bacteria involved, or merely describe the mechanics of death, such as organ failureor cardiac arrest.

For many victims’ relatives interviewed by Reuters, the death certificate held specialsignificance. They had watched an infection squeeze the life out of a loved one, often overseveral months and in gruesome ways. To find no official record of that on the deathcertificate came as a shock. It was as if the killer got away.

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Howcountinghelps:theHIV/AIDSmodelThe CDCdocumented the firstAIDS cases in 1981.Within three years,most state healthdepartments requiredhospitals andphysicians to reportand name each newdiagnosis.

Surveillance systemssoon evolved tocapture each AIDS-related death. Healthofficials used thatinformation to directresources to thehardest-hit areas andstudy how thedisease wasspreading. Officials

OFF THE RECORD: Rae Greulich said she was outraged that her husband’s death certificate cited “cardiac arrhythmia” as cause of death afterhe lost a months-long battle against multiple superbug infections following transplant surgery. REUTERS/David McNew

Dan Greulich’s " medical records show that, after histransplant operation, he spent five months battling drug-resistant infections that left him so debilitated he asked tobe taken off of life support. He died in June 2012. By thetime of his death – due to “cardiac arrhythmia,” accordingto the death certificate – the cost of his care at UCLAMedical Center amounted to more than $5 million.

“When the doctor wouldn’t count him as one of the peoplewho die from hospital-acquired infections, I was outraged,”said Rae Greulich, his widow. She considered suing thehospital but never did.

UCLA Medical Center declined to comment.

Joshua Nahum’s " recovery from a skydiving accident onSept. 2, 2006, was going so well at Longmont UnitedHospital in Colorado that he was transferred to NorthernColorado Rehabilitation Hospital a month later inpreparation for going home.

Within days, his temperature spiked, his conditiondeteriorated, and he was transferred back to Longmont.There, he was diagnosed with meningitis fromEnterobacter aerogenes, a virulent drug-resistantpathogen spread almost exclusively in healthcare settings.

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and the publicwatched deathsacross the countryclimb at an alarmingrate.

“AIDS was constantlyincreasing,” saidMervyn Silverman,San Francisco’sdirector of health from1977 to 1985. “AIDScases became a fewthousand, then20,000, and it scaredthe hell out ofpeople.”

Activism swelled,helping to attractmillions of dollars forpublic educationcampaigns and drugdevelopment. Thenumber of infectionspeaked at about78,000 in 1993 andthen rapidly fell. In1995, as new,effective drugtreatments becameavailable, the numberof deaths peaked atabout 53,000. In2013, the latest yearfor which numbersare available, about13,000 people diedwith AIDS.

So far, drug-resistantinfections haven’tprompted anythinglike that sort of broadmobilization.

Consider that for thecurrent year,Congress allocated$7.7 billion to fightAIDS, including $789million to the CDC forprevention andresearch. Forantibiotic-resistantinfections, which killtens of thousands ofpeople a year, thisyear’s total allocationcame to $1 billion. Ofthat, $160 million innew money goes tothe CDC, which untillast year didn’t evenhave a line item in itsbudget for fightingdrug-resistantinfections.

By the time he died on Oct. 22, the swelling in his brainhad made him a quadriplegic, said his father, ArmandoNahum. The infection was “the most immediate cause ofhis death,” his neurosurgeon, Dr E. Lee Nelson, toldReuters.

His death certificate said he died of “DelayedComplications of Craniocerebral Injuries” from theaccident. “I remember being dumbfounded. ‘Are youserious?’” Nahum said. “All I asked was that they write thetruth – that Josh died of an infection.”

Hospital records obtained by the family show he alsocontracted meningitis from a methicillin-resistantStaphylococcus epidermidis infection while at Longmont.Similar to MRSA, it is a potentially lethal drug-resistantbug.

In an email statement, Nancy Driscoll, chief nursing officerat Longmont United, said an independent reviewconcluded that Nahum’s care “was appropriate.” She didnot respond to questions about how he contracted theinfections. Northern Colorado Chief Executive Officer BethBullard declined to discuss the case.

Because Nahum died nearly two months after the accident,the cause of death was certified by the Boulder Countycoroner’s office. Dr John E. Meyer, deputy coroner at thetime, signed the death certificate. He told Reuters that hedid not recall the case but would not have thought tospecify that the complication was an infection.

“There’s certainly no rule that I know of,” he said.

Patient safety groups petitioned the CDC in 2011 to add aquestion about hospital-acquired infections to its standarddeath certificate, which is used by many states.

CDC Director Dr Thomas Frieden wrote that he wouldconsider including patient advocates in discussions thenext time the agency revises its death certificate, but therewere no plans to make any changes “in the near future.”

In a statement emailed to Reuters, Frieden said: “Whiledeath certificates provide helpful information, theunfortunate reality is that they don't provide in-depthclinical information.”

PROTECTIVE SECRECY

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DEATH SCENE: Josiah Cooper-Pope had been dead twoweeks by the time Chippenham Hospital in Richmond,Virginia, notified state authorities of the MRSA outbreak inits neonatal intensive care unit; under state law, it shouldhave reported the outbreak four days before the infant fellill. REUTERS/Chet Strange/Dan Dalstra

Antibiotic-resistant bacteria have been around nearly aslong as antibiotics. Alexander Fleming discovered penicillin, the first modern antibiotic, in1928, saving millions of lives from infections that just a few years earlier would have beenfatal. By 1940, researchers were reporting that bacteria had already developed resistance tothe drug.

Modern science became locked in a war of one-upmanship with the microbial world.Researchers would develop a class of drugs to replace those that were becoming ineffective,and soon enough, bacteria would begin showing resistance to the new drugs – a problemworsened by widespread overprescription of antibiotics and their overuse in farm animals.

By the 1990s, drug-resistant infections had reached crisis proportions. Advances in medicinehave been, paradoxically, a big reason for the worsening epidemic.

More people than ever are living with weak immunity: premature infants, the elderly, andpeople with cancer, HIV and other illnesses that were once fatal but are now often chronicconditions. That’s also why superbugs most often occur in hospitals, nursing homes and otherhealthcare facilities – places where susceptible populations are concentrated.

In 2001, a task force led by the CDC, the Food and Drug Administration and the NationalInstitutes of Health declared antibiotic-resistant infections to be a grave public health threatand issued an action plan to tame the problem. The group’s recommendations includedcreating a national surveillance plan and speeding development of new antibiotics.

Yet not a single new class of antibiotics has beenapproved for medical use since 1987. Despite yearsof efforts to educate healthcare workers aboutinfection control, multiple studies show that manystill routinely flout even basic preventive measures,like hand-washing.

While the types of bacteria showing drug resistancehave multiplied, the federal government requireshospitals to report infections for only two of them,MRSA bacteremia, or blood infection, and C.difficile.! It requires limited reports on the othersand relies on the states to fill in the gaps.

In 2014, the administration of President Barack Obama issued a new national action plan tocombat antibiotic-resistant bacteria. Congress followed last year with a $160 million increasein the CDC’s budget to bolster research, drug development and surveillance of superbugs bythe states.

But as Reuters found, surveillance carried out by the states can come up against stronginstitutional resistance and laws that shield the healthcare industry.

Under Virginia law, Chippenham Hospital should have reported its 2010 MRSA outbreak tothe state Department of Health when the third baby in the neonatal intensive care unit testedpositive for the bug, health department officials said. That was four days before newbornJosiah Cooper-Pope " fell ill.

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Instead, according to Virginia Health Departmentrecords and interviews with department officials, thehospital didn’t notify public health officials untilnearly every baby in the unit had been infected – andthen only by mail.

By that time, Josiah had been dead two weeks andanother baby was in critical condition with a MRSAinfection.

After persuading the hospital to temporarily closethe unit and bringing the outbreak under control,Health Department investigators found thatChippenham hadn’t taken basic steps to preventMRSA’s spread, such as training staff, scrubbingfurniture and computers, and testing all infants inthe nursery when the infection first surfaced.

Jennifer Stanley, a spokesperson for Hospital Corpof America, which owns Chippenham, said that sincethe outbreak, the hospital has put in place“aggressive infection prevention measures” and“intensive education and training.”

Virginia took no action against the hospital for thelethal outbreak.

The state can fine hospitals for violating regulations,but “this is not the approach [the Department ofHealth] typically follows,” said Maribeth Brewster,department spokesperson. Officials prefer “workingclosely” with hospitals to correct patient safetyproblems, she said, and a follow-up inspection atChippenham Hospital found no regulatoryviolations, so no action was warranted.

In response to a Reuters public records request on the outbreak, the Health Department senta copy of its investigation report in which the name and address of the hospital were blackedout.

The same was true for 22 more superbug outbreaks in Virginia healthcare facilities since 2007that involved more than 130 patients, including 15 who died. State law prohibits the agencyfrom identifying the location of outbreaks. At least 27 other states have similar laws orpolicies in place.

Disclosing the names of healthcare providers “would serve as a significant disincentive to thetimely reporting of disease outbreaks,” said Brewster, the Virginia Health Departmentspokesperson.

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Tarant, the doctor who signed Josiah’s death certificate, put it this way: “Things like this, ifdealt with appropriately, are best if kept internally. I don’t think people want to see how thesausage is made.”

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

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

Those complaints were detailed in a notice the CDC and CMS sent late last year to hospitalsnationwide, warning them that offenders could be fined and cut off from federal funds forcovering up infections they are legally required to disclose.

Officials said that due to database limitations, they did not know whether any facilities hadbeen cited for underreporting infections since the notice was issued.

Acknowledging any infection caught in a hospital or other healthcare setting carries anotherrisk: The paper trail can support a subsequent lawsuit.

DOUBLE TRAGEDY: Kelly and Ryan Breaux lost their twins, Talon and Emma, to drug-resistant infections they caught soon after they were born– Talon at 15 days old and Emma three and a half years later. The couple eventually won a $6 million jury award assigning blame for Emma’sdeath to the MRSA that had left her permanently damaged. REUTERS/Edmund Fountain

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EmmaBreaux’smedicalexpenseseventuallyexceeded $4million forrepeatedhospitalizationsdue tocomplicationsfrom herMRSAinfection.

Emma Grace Breaux " and her twin brother, Talon, fell ill from infections shortly after theywere born 12 weeks premature at Lafayette General Medical Center in Lafayette, Louisiana, in2005. Talon died at 15 days old after becominginfected by a virulent strain of Pseudomonasaeruginosa,! a ubiquitous bacteria thateasily contaminates hospital equipment.

“The day we buried him, we found out aboutEmma’s infection,” said Kelly Breaux, theirmother.

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 inFlorida to have her leg repaired when shecame down with swine flu. It was too much forher heart and lungs. After a six-week battle,she died at Miami Children’s Hospital just shyof her fourth birthday. Her death certificateblamed flu-related pneumonia. IncludingMRSA as a cause of death “was notconsidered,” said Dr Sharon Skaletzky, whowas at Miami Children’s at the time andsigned the death certificate.

Talon’s case was clear-cut; his death certificate cited septic shock due to his hospital-acquiredPseudomonas! infection as the cause of death.

Emma’s was more complicated. Her medical expenses alone eventually exceeded $4 millionfor repeated hospitalizations due to complications from her MRSA infection. The family soldtheir home, truck and other possessions to stay afloat while she underwent multipleoperations.

A Louisiana appeals court ultimately ruled that MRSA was responsible for her death and in2013 upheld a jury award of more than $6 million in damages and medical expenses for thetwins.

Lafayette General Medical Center spokesperson Daryl Cetnar said no one with knowledge ofthe case was available.

NATIONAL PRIORITIES

Lack of a unified national surveillance system makes it next to impossible to count thenumber of drug-resistant infections, fatal or otherwise. Theoretically, deaths could be countedthrough the nation’s vital statistics.

Those numbers, compiled by the National Center for Health Statistics (NCHS), include births,marriages, divorces and, using data culled from death certificates, information on what iskilling whom. The numbers are critical in determining how money is distributed for research

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LEFT BEHIND: Natalie Silva’s children, flanked by theiraunts Stephanie Hall (left) and Crystal Silva, lost theirmother to a MRSA infection she contracted soon after herson’s birth. Silva’s family paid $3,000 for an autopsy toensure that MRSA was cited on her death certificate.REUTERS/Dan Dalstra

“We knewthat MRSAplayed a hugerole. We hadto fight forthem toinclude it” onthe deathcertificate.Crystal Silva, sister ofMRSA victim NatalieSilva

and public health campaigns.

As examples in this article show, superbug infections are often omitted from deathcertificates. But even when they are recorded, NCHS can’t feed that information into vitalstatistics: The World Health Organization (WHO) classification system the agency uses lacksmortality codes for most drug-resistant infections, though it has codes for more than 8,000other possible causes of death.

The CDC added codes for use in the United States forterrorism-related deaths a year after the Sept. 11,2001, attacks. It could do the same for deaths fromdrug-resistant infections. Officials told Reuters theCDC is instead working to incorporate the codes intothe WHO’s next revision of the internationalclassification system. The revised system is expectedto be completed in 2018 but not fully in use until the2020s.

There are other ways to count deaths, such assearching the text of death certificates as Reuters didin its analysis with help from the NCHS. CDCofficials told Reuters they now are exploring“how we might be able use literal text captureto get additional information on resistantinfection deaths which could be useful forannual tracking.”

As it stands, the CDC has the NationalHealthcare Safety Network. Under thissurveillance program, about 5,000 hospitalsand in-patient rehabilitation facilities filequarterly reports on several types ofhealthcare-related infections as a condition ofreceiving Medicare and Medicaid payments.

But only two superbug infections are on thereportable list, MRSA bacteremia and C.difficile.! The others are reported under onlylimited circumstances, such as when related toa hysterectomy or a catheter-associatedurinary tract infection.

The reports are typically five to seven months old by the time they are logged, and thus aren’tuseful for real-time surveillance. And the CDC doesn’t require facilities to report deaths.Determining cause of death is difficult and would entail extra training for hospital staff whofill out the forms and oversight, which the agency can’t afford, according to Dr Daniel Pollock,surveillance branch chief for the CDC’s Division of Healthcare Quality Promotion.

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CDC Director Frieden, noting that there is “no simple way to code for drug-resistantinfections” on death certificates, said the CDC “is supporting states’ efforts to respond toantibiotic resistance and help protect Americans from this threat.”

Just 16 state health departments told Reuters that they tally deaths from reportableantibiotic-resistant infections. Eight others track deaths only when they are part of anoutbreak. (Pennsylvania and Georgia declined to answer the survey questions.)

Among states that don’t track deaths is Texas, where Natalie Silva " contracted MRSA inNovember 2012 at Hospital Corp of America’s Del Sol Medical Center in El Paso. Two daysafter giving birth to a healthy boy by cesarean section, her incision began gushing blood, saidher sister, Crystal Silva. Back at the hospital, Natalie Silva tested positive for MRSA.

Hospital staff assured Silva it was safe to continue holding and breastfeeding her week-oldson, according to Crystal Silva and her other sister, Stephanie Hall. One month later, her sonwas in the neonatal intensive care unit battling his own MRSA infection, they said.

He survived. For Silva, the next few months brought a cascade of medical complications,records show. Multiple infections led to multiple surgeries that left her paralyzed. Hallrecalled spending a Friday night in September 2013 at her sister’s bedside, painting Silva’sfingernails metallic blue and her toenails metallic purple, optimistic that her sister wouldreturn home.

Three days later, Silva died.

Silva’s doctors wanted to blame cardiac arrest on the death certificate, Silva’s sisters said.

Del Sol Medical Center declined to comment.

Silva’s family paid $3,000 for an autopsy that confirmed that the MRSA infection contributedto her death. Her death certificate lists cardiopulmonary arrest as the immediate cause ofdeath, due to complications from a MRSA infection.

“She was 23 years old and healthy. We knew that MRSA played a huge role,” said CrystalSilva. “We had to fight for them to include it.”

In September last year, Hall filed a medical malpractice and wrongful death lawsuit againstDel Sol in El Paso County District Court, alleging that the hospital was responsible for Silva’sMRSA infection and the fatal complications that followed. The lawsuit is seeking payment toSilva’s two children for the loss of their mother, loss of her wages while she was sick, medicalcosts and funeral expenses.

Christine Mann, spokeswoman for the Texas health department, said counting superbugdeaths would require a formal statute or rule change in the state. “We prioritize our resourcesand attention toward taking public health action where it is most needed,” she said.

Natalie Silva’s was among about 10,000 deaths linked to antibiotic-resistant infections inTexas from 2003 to 2014, according to the Reuters analysis. Though her sisters succeeded ingetting an honest reckoning on Silva’s death certificate, her death by superbug was nevercounted.

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Richard Armbruster Mark Bennett Keith Blair Emma Grace Breaux Alice Brennan Josiah Cooper-Pope

As if the killer got awayBy Deborah J. Nelson, Yasmeen Abutaleb and Ryan McNeill

In a more than yearlong investigation, Reuters used court records, news reports, patientadvocacy organizations and Web searches to identify individuals who had died of antibiotic-resistant infections and then contacted relatives to obtain death certificates and medicalrecords. In some cases, the death certificate did not mention the lethal infection. In manyothers, it did, but the death occurred in a state that doesn’t track the infections. Even in statesthat do track some superbug deaths, none are counted nationally, in real time, in any unifiedsurveillance system. For relatives, the lack of full disclosure on the death certificate wasparticularly galling – an insult to the memory of the dead.

Here are some of their stories:

Deconstructing the CDC’s ‘snapshot’ estimatesBy Ryan McNeill

Richard Armbruster, 78, of Missouri, a former minor-league pitcher in the Greater St. Louis Amateur Baseball Hall ofFame, contracted an Acinetobacter baumannii infection after hip-replacement surgery in 2009 at St. Anthony’s MedicalCenter in St. Louis, hospital records show. A hospital spokesman told Reuters that St. Anthony's had 21 cases ofAcinetobacter from 2008 to 2011, before infection-control measures eradicated it. Armbruster died two days after testingpositive for the superbug. His death certificate says he died of bile duct cancer, with no mention of infection. It was ajudgment call, said Dr Richard Payne, an independent pathologist who discovered the cancer during an autopsy and filledout the death certificate. Three years after Armbruster’s death, his wife Donna, 83, broke her pelvis in a fall. While inrehab, she contracted Clostridium difficile and died. “With our mom, it was so eerily similar,” said Amy Fix. However, hermother’s death certificate cited the infection. “This is something that really consumed me,” Fix said. “I didn’t feel I gotjustice for my dad.” (Editor’s note: The number of cases has been updated after a hospital review resulted in a downwardrevision.)

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THE SOURCE: The Centers for Disease Control andPrevention, with headquarters in Atlanta, Georgia,released estimates of deaths from drug-resistantinfections that Reuters found could be off by more than30 percent. REUTERS/Tami Chappell

The CDCestimates areunderminedby smallsample sizes,old data andinformationfrom a fewgeographicareas.

ATLANTA, Ga. - In 2013, the U.S. Centers forDisease Control and Prevention released estimates ofhow many people in the country die every year fromantibiotic resistant infections: 23,000. The agencyestimates that an additional 15,000 die annuallyfrom Clostridium difficile, an infection linked tolong-term antibiotic use.

The estimates, the agency said at the time, providedthe “first snapshot of the burden and threats posedby antibiotic-resistant germs having the most impacton human health.”

Since then, the estimates have been cited byuntold numbers of media outlets and scholarlyreports. A Google search for the estimates canyield nearly 100,000 hits. Reuters took a closelook at how the agency arrived at its numbersand made a surprising discovery: They arebased on so little hard data that they could beoff by more than 30 percent – more than10,000 people – in either direction.

The statistical uncertainty is a byproduct ofthe nation’s lack of a unified surveillancesystem. No one at the state or federal levelknows how many people are dying from drug-resistant infections.

Absent hard numbers, the agency turned tostudies that rely on statistical sampling, whereby a subset of the population is studied and theresults are extrapolated to cover the entire country.

Statistical sampling is common. Precision depends on the size of the sample. The larger thesample, the greater the precision. Reuters found that the CDC estimates are undermined bysmall sample sizes, old data and information from a few geographic areas.

For example, the CDC estimate of 15,000 deaths annually from C. difficile was based onmonitoring of 88 inpatient and 33 outpatient laboratories in 10 areas across the country in2011.

The 10 areas, part of the agency’s Emerging Infections Program (EIP), represented about 3.6percent of the nation’s population at the time. Under the EIP, a handful of states are givenfederal dollars to closely monitor infectious diseases, generally in a few counties. They do notinclude population centers like New York City, Southern California, Chicago or Boston, or anylocations in Texas or Florida.

Infectious diseases can occur at substantially different rates in different areas. For example,the study on which the estimates are based, titled “Burden of Clostridium difficile Infection inthe United States” and published last year in the New England Journal of Medicine, found

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# $ % & ' + ) * Follow Reuters Investigates # $

that the incidence of hospital-acquired C. difficile was 47.3 per 100,000 people in KlamathCounty, Oregon, while it was 159.1 per 100,000 in New Haven, Connecticut.

Because of statistical uncertainty, the estimate of deaths from C. difficile could be anywherefrom 7,600 to 20,000, Reuters found.

In many components of the CDC estimates, the agency relied on even less information. Oneexample is the deadly carbapenem-resistant Enterobacteriaceae (CRE),! which publichealth officials describe as a nightmare bug with high mortality.

Not a single actual CRE death went into the estimates.

Instead, for CRE and five other infections, the agency turned to a study in which researcherssurveyed 183 hospitals within the EIP program. The survey identified 504 hospital-acquiredinfections during a single year, 2011.

Based on those 504 infections, researchers extrapolated that there were 721,800 suchinfections nationally. But because of the small sample size, the estimate could be anywherefrom 214,700 to 1.4 million.

CDC researchers then used the study, “Multistate Point-Prevalence Survey of Health Care-Associated Infections,” published in the New England Journal of Medicine, to estimate howmany of the 721,800 infections were Klebsiella! species or Escherichia coli,! two of themore common types of bacteria that can become resistant to the carbapenem class ofantibiotics.

Then the CDC used data reported by about 2,000 hospitals to its National Hospital SafetyNetwork during 2009-2010 to determine what percentage of the infections were drug-resistant.

The agency estimated 6.5 percent of people with those drug-resistant infections die, based ona single study of a Chicago teaching hospital in 2000 in which 34 people died. Applying thatpercentage, they came up with their estimate of 600 deaths annually from CRE. Reutersfound that using the CDC’s methodology, it could be twice that – 1,200 – or as few as 180.

—————

The Uncounted

By Ryan McNeill, Deborah J. Nelson and Yasmeen Abutaleb

Photo editing: Steve McKinley

Data: Ryan McNeill, Selam Gebrekidan

Graphics: Christine Chan

Video: Lily Jamali

Design: Troy Dunkley

Edited by John Blanton

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