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 time as he took his final breath.
He was 17 days old.
What no one at the hospital told Bowser was that her newborn was the
fourth baby in the neonatal unit to catch the same infection,
methicillin-resistant Staphylococcus aureus, better-known as MRSA.
It would sicken eight more, records show – nearly every baby in the
unit – before the outbreak had run its course.
The shock of her son’s death came back to her when, after being
contacted by Reuters earlier this year about the outbreak, Bowser
went to Virginia’s Division of Vital Records to get a copy of
Josiah’s death certificate. The cause of death: “Sepsis due to (or
as a consequence of): Prematurity.” Sepsis is a complication of
infection, but there was no mention of MRSA.
“My heart hurts,” Bowser said, sobbing. “I saw what this did to him.
And then they just threw a bunch of words on the death certificate.”
According to their death certificates, Emma Grace Breaux died at age
3 from complications of 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
and liver transplant.
In each case – and in others Reuters found – death resulted from a
drug-resistant bacterial infection 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 grave threat to public
health, a Reuters investigation has found that infection-related
deaths are going uncounted, hindering the nation’s ability to fight
a scourge that exacts a significant human and financial toll.
"YOU NEED TO KNOW"
Even when recorded, tens of thousands of deaths from drug-resistant
infections – as well as many more infections that sicken but don’t
kill people – go uncounted because federal and state agencies are
doing a poor job of tracking them. The Centers for Disease Control
and Prevention (CDC), the go-to national public health monitor, and
state health departments lack 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-related complications nearly a year
later, at age 23.
Silva’s sisters fought a successful battle to get the hospital to
cite MRSA on her death certificate. Still, her death went uncounted:
The Texas health department doesn’t track deaths like hers from
antibiotic-resistant infections, and neither does the CDC.
As America learned in the battle against HIV/AIDS, beating back a
dangerous infectious disease requires an accurate count that shows
where and when infections and deaths are occurring and who is most
at risk. Doing so allows public health agencies to quickly allocate
money and manpower where they are needed. But the United States
hasn’t taken the basic steps 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 health policy 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 other clinicians get little training in
how to fill out the forms. Some don’t want to wait the several days
it can take for laboratory confirmation of an infection. And an
infection’s role in a patient’s death may be obscured by other
serious medical conditions.
There’s also a powerful incentive not to mention a hospital-acquired
infection: 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.
Doctors and other clinicians also may simply not understand the
importance of recording the infections. Sandy Tarant, the doctor who
signed Josiah Cooper-Pope’s death certificate, told Reuters that he
thought “it didn’t matter” whether he cited a MRSA infection.
Legally, he’s right. Most states don’t require doctors to specify
whether MRSA was a factor in a death. Washington and Illinois are
exceptions.
State laws govern how death certificates are filled out. Most use a
model law that mandates financial penalties for anyone who
deliberately makes a false statement on the document, said Patricia
Potrzebowski, director of the National Association for Public Health
Statistics and Information 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 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.
The numbers are regularly cited in news reports and scholarly
papers, but they are mostly guesswork. Reuters analyzed the agency’s
math and found that the estimates are based on few actual reported
deaths from a drug-resistant infection.
The agency leaned heavily on small samplings of infections and
deaths collected from no more than 10 states in a single year, 2011.
Most didn’t include populous areas such as Florida, Texas, New York
City and Southern California.
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 the purposes of fighting a
persistent public health crisis.
Describing the estimates to Reuters, even CDC officials used words
like “jerry-rig,” “ballpark figure” and “a searchlight in the dark
attempt.”
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.”
In a statement emailed to Reuters, CDC officials said they released
the 2013 estimates report “despite its limitations because of our
profound concern about the seriousness of the threat.” The agency
said it is working on improving its estimates.
The numbers of uncounted deaths from drug-resistant infections
“speak to what can happen when we don’t allocate the necessary
resources to bolster … our public health safety network,” said
Senator Sherrod Brown. “When we see discrepancies in reporting, are
unable to finance a workforce to monitor 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 and better 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 health departments of all 50
states and the District of Columbia found wide variations in how
they track seven leading “superbug” infections – if they do so at
all.
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Only 17 states require notification of C. difficile infections, for
example, while just 26 states and Washington, D.C., do the same for
MRSA. Fewer than half require notification of infections by
carbapenem-resistant Enterobacteriaceae (CRE), a family of pathogens
that the CDC has deemed an “urgent threat.” CRE gained notoriety
when more than 200 people were 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, all 50 states
require reporting of deaths from AIDS. Deaths from hepatitis C and
tuberculosis are also closely tracked.
"GROSSLY UNDER-REPORTED"
States that said they do track deaths generally do so for only a few
types of drug-resistant infections and not consistently. In the
survey, they reported a combined total of about 3,300 deaths from
2003 to 2014.
That’s a tiny fraction of the actual toll: A Reuters analysis of
death certificates found that nationwide, drug-resistant infections
were mentioned as contributing to or causing the deaths of more than
180,000 people during the same period. To conduct the analysis,
Reuters worked with the CDC’s National Center for Health Statistics’
Division of Vital Statistics to search text descriptions on death
certificates to identify relevant deaths.
Among the states that don’t require reporting of superbug deaths is
California, the nation’s most 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 department spokeswoman 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 more than 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’s director of antimicrobial resistance programs.
Requiring hospitals to report deaths is more than the department can
take on right now, she said. “We have a significant problem getting
clinicians 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 worse nationwide, as the number of deaths from
drug-resistant infections more than doubled from 8,600 in 2003 to
about 16,700 in 2014. (Some of that increase could be the result of
clinicians’ increased awareness of the infections.)
Death certificates aren’t a perfect measure. They can be wrong:
Cause of death often is a judgment 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. Just how far under is impossible to know.
But there are clues: Connecticut, with a grant from the CDC, is the
only state that closely monitors MRSA deaths. It logged 2,084 deaths
from drug-resistant infections from 2003 to 2014, all but 10 from
MRSA. That’s nearly twice the number of deaths from MRSA in the
state that 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 a general infection-related condition – death due
to sepsis, for example – without mentioning the actual bacteria
involved, or merely describe the mechanics of death, such as organ
failure or cardiac arrest.
For many victims’ relatives interviewed by Reuters, the death
certificate held special significance. They had watched an infection
squeeze the life out of a loved one, often over several months and
in gruesome ways. To find no official record of that on the death
certificate came as a shock. It was as if the killer got away.
MISLEADING DEATH CERTIFICATES
Dan Greulich’s medical records show that, after his transplant
operation, he spent five months battling drug-resistant infections
that left him so debilitated he asked to be taken off of life
support. He died in June 2012. By the time of his death – due to
“cardiac arrhythmia,” according to the death certificate – the cost
of his care at UCLA Medical Center amounted to more than $5 million.
“When the doctor wouldn’t count him as one of the people who die
from hospital-acquired infections, I was outraged,” said Rae
Greulich, his widow. She considered suing the hospital but never
did.
UCLA Medical Center declined to comment.
Joshua Nahum’s recovery from a skydiving accident on Sept. 2, 2006,
was going so well at Longmont United Hospital in Colorado that he
was transferred to Northern Colorado Rehabilitation Hospital a month
later in preparation for going home.
Within days, his temperature spiked, his condition deteriorated, and
he was transferred back to Longmont. There, he was diagnosed with
meningitis from Enterobacter aerogenes, a virulent drug-resistant
pathogen spread almost exclusively in healthcare settings.
By the time he died on Oct. 22, the swelling in his brain had made
him a quadriplegic, said his father, Armando Nahum. The infection
was “the most immediate cause of his death,” his neurosurgeon, Dr E.
Lee Nelson, told Reuters.
His death certificate said he died of “Delayed Complications of
Craniocerebral Injuries” from the accident. “I remember being
dumbfounded. ‘Are you serious?’” Nahum said. “All I asked was that
they write the truth – that Josh died of an infection.”
“She was 23 years old and healthy. We knew that MRSA played a huge
role,” said Crystal Silva. “We had to fight for them to include it.”
In September last year, Hall filed a medical malpractice and
wrongful death lawsuit against Del Sol in El Paso County District
Court, alleging that the hospital was responsible for Silva’s MRSA
infection and the fatal complications that followed. The lawsuit is
seeking payment to Silva’s two children for the loss of their
mother, loss of her wages while she was sick, medical costs and
funeral expenses.
Christine Mann, spokeswoman for the Texas health department, said
counting superbug deaths would require a formal statute or rule
change in the state. “We prioritize our resources and 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 in Texas from 2003 to 2014,
according to the Reuters analysis. Though her sisters succeeded in
getting an honest reckoning on Silva’s death certificate, her death
by superbug was never counted.
(Edited by John Blanton)
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