The Dangers of Celebrating Too Early

The Dangers of Celebrating Too Early


Clostridium difficile infections are a significant cause of death and harm in the United States. Despite their growing prevalence, surveillance and public reporting of C. difficile infections is uneven, leading to conflicting reports and measurements of progress. Mandating increased surveillance, public reporting, and cause of death recording while providing funding for implementation and maintenance are critical to properly assess and combat these often-deadly infections.


Clostridium difficile is a leading cause of healthcare associated infections. In 2013, the Centers for Disease Control declared C. difficile infections (CDI) an “urgent threat” (CDC, 2013). In 2015, the CDC estimated that C. difficile causes 500,000 infections and contributes to 29,000 deaths annually. While federal estimates are useful, it’s likely that they fail to capture the true burden of this infection. In addition to the mortality and morbidity associated with CDI, these preventable infections are a huge financial burden, costing up to $8.2 billion in aggregate annual costs (CDC, 2013).

The Peggy Lillis Foundation (PLF) was founded in response to the April 2010 death of a 56-year-old Brooklyn, kindergarten teacher from a community onset CDI. PLF is building a national C. difficile awareness movement by educating the public, empowering advocates and shaping policy. The PLF seeks to increase transparent surveillance and public reporting of CDI to raise awareness and ensure we have the resources necessary to combat it.

Conflicting Reports Demonstrate US Failure to Adequately Track C. difficile

On June 27, 2017, NPR’s “Shots” blog posted an article with a very exciting headline,“C. diff Infections Are Falling, Thanks To Better Cleaning And Fewer Antibiotics.” The reporter Angus Chen cited “an early look at data” from the Centers for Disease Control and Prevention’s Emerging Infections Program (EIP) and recent success from Veterans Administration (VA) hospitals’ antibiotic stewardship programs to suggest that CDI’s may have fallen by as much as 15 percent from their 2011 height (Chen 2017). This is good news, but the headline overstates the progress made and downplays the limitations of the data used.

Relying on data from the CDC’s EIP and VA hospitals, the piece’s celebration of failing infection rates looks premature. While both the EIP and the VA system are important indicators of public health, where C. difficile is concerned, there are many important issues not being considered. A significant number of CDI’s occur in the community, including skilled nursing and long-term care facilities. Only hospitals participating in Medicare and Medicaid are required to report the C. difficile infection rates to the CDC, leaving those community cases largely uncounted. It is estimated that 90 percent of all Americans who perish from C. difficile infections are aged 65 and over (Kochanek, 2016, Hunter 2015). However, with fewer than 5 percent of Americans over 65 being autopsied after death, seniors who die outside of a hospital are unlikely to be tested for CDI (Hoyert 2011).

State-based reporting also fails to accurately capture the number of CDI’s. Despite more than half of U.S. states requiring some degree of public reporting of healthcare associated infections (HAIs) (Reagan 2012), only 20 states mandate the inclusion of C. difficile (Reagan 2015). Moreover, only two states mandate reporting C. difficile infections by long-term care facilities with three others having voluntary programs (Cohen 2011). Given that C. difficile disproportionately impacts the elderly, these facilities are an underappreciated reservoir of infections.

For example, in July 2017, a study was published by researchers at the University of Pennsylvania’s Perelman School of Medicine showing that “multiple recurring C. difficile infections (mrCDI), rose by an alarming 189 percent” between 2001 and 2012 (Ma et al, 2017). The study also noted that common CDI rose by 43 percent over the same period. The researchers also looked at 40 million U.S. patients enrolled in private health insurance plans to identify the rise in mrCDI (Ma et al, 2017).

Finally, in 2008, a national C. difficile prevalence study was published in the American Journal of Infection Prevention. Leveraging the membership of the Association for Professionals in Infection Control, the authors surveyed respondents from 648 healthcare facilities representing 12.5% of all US acute care facilities. The authors noted that on any given day more than 7,000 US hospital patients have C. difficile infections (Jarvis 2008). Extrapolating from this daily number, this could mean more than 2.5 million C. difficile cases and more than 100,000 deaths occur in the US annually. Given that the C. difficile burden both within and outside of US hospitals has grown since 2008, current official counts of both burden and mortality may be grossly underestimating the true human cost.

The Emerging Infections Program (EIP), on which the CDC bases its C. difficile estimates, represents only 3.6 percent of the US population. EIP is an important and necessary program, but it is also inadequate in its ability to monitor hospitals and long term care facilities. Like any federal agency, the CDC has a limited budget and must make tradeoffs in monitoring and providing guidance to improve the health of 330 million Americans.

Learning from HIV/AIDS

The patchwork estimates of CDI and related deaths is not limited to a CDC problem. In the 2016 budget, federal government increased financial and research investment in understanding and combating C. difficile and other HAIs. However, despite this increase in research and awareness efforts, few resources were dedicated towards increasingly prevalent HAIs; instead, being relegated to better known infectious disease like HIV/AIDS. For example, in 2016 the National Institutes of Health (NIH) budgeted $3 billion for HIV/AIDS, whereas the combined budget for antibiotic resistant infections and C. difficile totaled $438 million (NIH 2017).

This is despite just C. difficile eclipsing AIDS as a cause of death in the last decade. As Reuters noted in its series “The Uncounted”,

The CDC documented the first AIDS cases in 1981. Within three years, 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. Officials and the public watched deaths across the country climb at an alarming rate. Activism swelled, helping to attract millions of dollars for public education campaigns and drug development. The number of infections peaked at about 78,000 in 1993 and then rapidly fell. In 1995, as new, effective drug treatments became available, the number of deaths peaked at about 53,000. In 2013, the latest year for which numbers are available, about 13,000 people died with AIDS.

The history of HIV/AIDS activism demonstrates how important tracking infectious diseases are to raising public awareness, allocating appropriate resources and, ultimately, eliminating the impact deadly epidemics. The time for this fight is now as C. difficile and multidrug resistant organisms are increasing in both scale and severity, the proposed 2018 federal budget makes significant cuts (Ramsay 2017) to our public health infrastructure. That’s on top of the potential Affordable Care Act repeal’s impact. The Senate’s repeal bill, the Better Care Reconciliation Act (BRCA), eliminates the ACA’s Prevention and Public Health Fund, which makes up 12% (or nearly $900 million) of the CDC’s budget (Johnson 2017). While BCRA failed to pass the Senate as did a so-called simple repeal of the ACA, President Trump continues to press for its dismantling.

The American public relies heavily on our public health agencies to protect us from threats as diverse as antibiotic resistant infections to bioterrorism. In recent history, we have failed to adequately invest in it. This lack of investment means the CDC and state health departments struggle to accurately track growing threats like C. difficile and antibiotic resistant HAIs. While we must point out when these agencies fall short, we also must insist that elected leaders provide the funding needed to understand and protect the public from these threats.

Making C. diff Count

My mother Peggy died from a community-acquired C. difficile infection in 2010. This bacteria that caused her infection does not appear on her death certificate. That year, C. difficile claimed an estimated 14,000 other Americans. Because my mother died without a will, we needed both her autopsy and death certificate for insurance and legal purposes. Weeks after her autopsy was performed, we still had not received it. My repeated calls to the Brooklyn office of the pathologist who performed it went unreturned. Exasperated, I finally called the main New York City Medical Examiner’s office and reached a different pathologist. She agreed to pull up my mother’s autopsy. As she reviewed it and took down my address, I asked, “Has my mother’s case been reported to the Health Department or the CDC?”

“No”, she said. “Why would it?”

“Isn’t it an unusual case?”, I replied.

“People die from C. difficile every day in New York. It’s just not that unusual, and we don’t track individual cases.”

The pathologist’s dismissal of my mother’s death shocked and angered me. Seven years later, the pathologist’s lack of urgency about the enormous death toll caused by a preventable and treatable infection, still disturbs me. The fact that my mother’s death was never counted by the state or the CDC will always bother me.

The growing burden and rate of mortality caused by C. difficile and antibiotic resistant HAIs requires a robust response. The first step is to accurately surveil and count the number of infections and related deaths. It is a basic scientific necessity to measure the breadth of the epidemic. Further, we have a moral duty to count those who suffer and die from these preventable infections in virtual secrecy, concealed in hospitals and nursing homes. Underreporting its prevalence not only hinders our ability to provide necessary information and statistics on success cases, it also leaves sufferers and caregivers to believe they are alone. This should not be the case.

More than a decade of data on public reporting of HAIs sheds light on how tracking and reporting lead to decreased infection rates. For example, states with public reporting of central line bloodstream infections (CLABSI) saw significant reductions over a six-year period (2006-2012) compared to those without (Liu et al, 2016). This correlates with the CDC’s findings that overall CLABSI rates fell by 50 percent from 2008 to 2014 (CDC 2016). Building on this progress, the following recommendations would greatly increase our efforts to combat C. difficile and antibiotic resistant HAIs:

    • Revising death certificate guidelines to require noting difficile and other HAIs as a the primary or contributing cause of death
    • Modernizing nationally reportable disease laws to include difficile and other HAIs by all healthcare facilities
    • Expanding existing state public reporting mandates to include long-term care and skilled nursing facilities
    • Increasing funding for surveillance, validation and public reporting at both the federal and state level

C. difficile and other HAIs are a substantial and largely preventable cause of harm and death. They also cost our healthcare system billions. Mandating increase surveillance, public reporting, and cause of death recording while providing funding for implementation and maintenance are critical to properly assess and combat these often-deadly infections. Thanks to activists, scientist and public health leaders, we have made progress in but we have a long way to go before celebrating victory. We can minimize the unnecessary harm and death caused by C. difficile and other HAIs by first making them count.


Centers for Disease Control & Prevention (2013). Antibiotic Resistant Threats in the United States, 2013, retrieved August 25, 2017:

Chen, A (2017). C. Diff Infections Are Falling, Thanks To Better Cleaning and Fewer Antibiotics. Shots: Health News from National Public Radio, retrieved August 25, 2017:

Cohen, Catherine C. et al (2011). State focus on health care-associated infection prevention in nursing homes.  American Journal of Infection Control, 42 (4), 360 – 365.

Hoyert DL (2011). The changing profile of autopsied deaths in the United States, 1972–2007. NCHS data brief, no 67. National Center for Health Statistics.

Hunter JC, Mu Y, Dumyati GK, et al (2016). Burden of Nursing Home-Onset Clostridium difficile Infection in the United States: Estimates of Incidence and Patient Outcomes. Open Forum Infectious Diseases.

Johnson, S. (2017). Public health funding slashed in Senate’s proposed ACA repeal bill. Modern Healthcare, retrieved August 25, 2017:

Kochanek KD, Murphy SL, Xu JQ, Tejada-Ve ra B. Deaths: Final data for 2014. National vital statistics reports; vol 65 no 4. Hyattsville, MD: National Center for Health Statistics. 2016

Liu, H., Herzig, C. T. A., Dick, A. W., Furuya, E. Y., Larson, E., Reagan, J., Pogorzelska-Maziarz, M. and Stone, P. W. (2017), Impact of State Reporting Laws on Central Line–Associated Bloodstream Infection Rates in U.S. Adult Intensive Care Units. Health Serv Res, 52: 1079–1098.

Ma GK, Brensinger CM, Wu Q, Lewis JD (2017). Increasing Incidence of Multiply Recurrent Clostridium difficile Infection in the United States: A Cohort Study. Ann Intern Med. 167:152–158.

McNeil, R, Nelson, D, and Atuleb, Y (2016). ‘Superbug’ scourge spreads as U.S. fails to track rising human toll. Reuters, retrieved August 27, 2017:

National Institute of Health (2017) Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC), retrieved August 7, 2017:

Ramsey, L (2017). Former Obama administration officials blast Trump’s proposed health budget cuts. Business Insider, retrieved August 25, 2017:

Reagan J, Hacker C (2012). Laws Pertaining to Healthcare-Associated Infections: A Review of 3 Legal Requirements. Infection Control and Hospital Epidemiology, 33 (1), 75-80.

Reagan J, Herzig CTA, Pogorzelska-Maziarz M, Dick AW, Stone PW, and Srinath JDD (2015). State Law Mandates for Reporting of Healthcare-Associated Clostridium difficile Infections in Hospitals. Infection Control & Hospital Epidemiology.


This article draws heavily from the work of Professor Julie Reagan. I am grateful for her leadership in studying and articulating the state policy regime around healthcare associated infections and her friendship.

I am grateful to Dr. Lisa Rogers of Transcended Consulting for ensuring my accurate use of statistics.

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Christian Lillis
Christian is executive director of the Peggy Lillis Foundation (PLF), a disease awareness and patient safety organization, co-founded with his brother, Liam, following the death of their mother from a Clostridium difficile infection in April 2010. PLF envisions a world where C. diff is rare, treatable and survivable. In pursuit of its vision, PLF is building a nationwide C. diff awareness movement to educate the public, empower advocates and shape policy. Christian is as an advisor to the Gulf Coast C. diff Collaborative, the Electronic Hand Hygiene Compliance Organization, the Patient Viewpoint Institute, a member of the technical expert panel for AHRQ’s Safety Program for Antibiotic Stewardship, CMS’ Partnership for Patients’ Patient and Family Advisory Council and in 2013, the CDC recognized PLF’s work with its Excellence in Partnership award for domestic advocates and organizations. Christian is a native of Brooklyn, New York. He currently lives in Park Slope with his husband and their rescued beagle, April. He holds a B.A. in Political Theory from Brooklyn College-City University of New York, where he served as President of the Lesbian, Gay, Bisexual & Transgender Alliance and won The Donald G. Whiteside Poetry Award.


  1. Quality of Life of CDiff patients – Please take 20 minutes to answer this survey

    Clostridium difficile is the most common health care-associated pathogen. Its consequences on the quality of life of patients lack data. If you face or faced a Clostridium difficile infection, please take 20 minutes to answer this survey:

    The purpose of this study is to evaluate the consequences of Clostridium difficile infections (CDI), if existing, on the quality of life of patients during the acute infection. This study will also explore the post-CDI symptoms that patients might experience.

    This study will help physicians, healthcare providers and policy makers understand the burden of CDI and to strengthen the need for therapies to combat and prevent CDI.