By William J. Beerman, Sr.
The Peggy Lillis Foundation (PLF) has kicked off a “Make C. diff Count” campaign to increase surveillance and public reporting of the superbug Clostridium Difficile (C. diff), and other healthcare-associated infections (HAIs).
“Everyone should count,” contend PLF co-founders Christian John Lillis and Liam Lillis. Their mother, Peggy Lillis, died of a C. diff infection 8 years ago at age 56. “When it comes to monitoring and combating healthcare-associated infections, like C. diff, counting the people who are harmed, and die, from these infections is critically important.”
“Tens of thousands of C. diff infections go uncounted every year due to our patchwork system of infectious disease reporting,” according to PLF.
Seventy-seven percent of Americans have not heard of C. diff. One reason is that the federal government and 49 states do not mandate reporting of C. diff infections (CDIs) on death certificates. A 2014 study showed 17 percent of deaths attributed to chronic diseases like heart disease actually were likely due to infection.
The 2011 death certificate for my mother, Mary Regina Beerman, showed “respiratory failure due to pneumonia due to a bed ridden state,” and “congestive heart failure” as causes of death. I wonder whether the cause of the “bed-ridden state” should have been mentioned. The death certificate did not mention C. diff although a hospital record showed a diagnosis of “Intestinal infection due to Clostridium Difficile” among my mother’s diagnoses. Mary Regina was diagnosed with C. diff 6 days into a 21-day stay in a nursing home. She died 10 days after the nursing home sent her to a hospital emergency room. Prior to breaking her hip and being sent to the nursing home for rehabilitation, she had been living independently.
PLF points out that C. diff is the most common cause of infectious diarrhea in healthcare settings. It caused nearly 500,000 infections in one year, and 29,000 deaths. Seventeen percent of C. diff cases occur in nursing homes and 22 percent in hospitals. Only 7 percent are completely unrelated to health care. In nursing homes, the infection interferes with residents’ rehabilitation therapy and recovery as it causes uncontrollable diarrhea, fever, nausea, abdominal cramping, dehydration, loss of appetite, and death in some cases. Ninety percent of Americans who perish from a CDI infection are 65 and over.
PLF points out that underreporting of C. diff cases results in fewer resources being allocated to combat C. diff. For example, the National Institutes of Health budgets $3 billion for HIV/AIDS, but only $438 million for C. diff and other antibiotic-resistant infections.
The “Make C. diff Count” campaign follows the PLF’s C. diff Summit and Lobby Day in Washington, DC April 8-10. Twenty-five PLF advocates met at 42 legislative offices on Capitol Hill, sharing their personal experiences and providing facts to an array of senators, congressmen, and staffers. They urged action on Senator Sherrod Brown’s STAAR Act (Strategies to Address Antibiotic Resistance).
About 30 PLF advocates from 14 states participating in the Summit were joined by another 40 stakeholders and leading experts in the fields of medicine, healthcare policy, aging, epidemiology, and grassroots organizing. Summit participants attended learning sessions on C. diff clinical and practice guidelines from the Infectious Disease Society of America and Society of Healthcare Epidemiologists of America; an overview of the Centers for Disease Control and Prevention healthcare-associated infection surveillance and reporting systems; and a preview of the Alliance for Aging Research’s forthcoming report on HAIs in nursing homes.
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In 1991 my son had cdiff during his cancer treatment. He was placed on flagyl however it did not work. He was hospitalized, and long story short, he lost 75% of his large intestine, had a colostomy bag for 5 months, then was taken down. Although the infection did not kill him, it was touch and go for weeks.
I HATE CDIFF