Fighting C. diff Through Education & Advocacy

1. Fighting C. diff Through Education & Advocacy

2. Christian John Lillis • Peggy’s eldest son • Executive Director, Peggy Lillis Foundation • Nonprofit Manager for 14 years • Patient Safety Activist since my mother’s death from a C. diff infection in April 2010

3. Let Me Tell You A Story… Harnessing Patient Stories to Raise C. diff Awareness and Advocate for Change

4. Who Was Peggy? • 56-year-old Kindergarten teacher/Part-time waitress • Former welfare recipient • 3rd of 9 children from Irish-Catholic, working class, Brooklyn family • Single Mother of 2 sons • Godmother to 12 • Master’s degree candidate • Community Acquired C. diff

5. Peggy’s C. diff Story • Prescribed clindamycin following root canal • Symptoms begin 5 days into course • Family suspected a stomach virus or food poisoning • Admitted to hospital 5 days after onset diarrhea • Died 36 hours later

6. How Peggy Died Terrified Confused Mutilated With strangers In pain Intubated

7. Lessons from Peggy’s Story • Lack of C. diff Awareness (even among highly educated people) • Persistence of C. diff Myths • Antibiotic Overuse (Clindamycin) • No warning from dentist • Danger of Prescribing Imodium

8. Moving Past Blame… Cycle of Blame

9. Learning from Patient Stories In a rapidly changing C. diff epidemic, looking at patient experiences: • Humanizes the statistics • Challenges C. diff mythology • Illustrates challenges and opportunities in infection control, prevention, public education, transparency and treatments • Highlights chances for collaboration

10. Judy Dexter • Grandmother from Maryland • Entered hospital for lung infection • Received antibiotics for 8 days • Suffered from C. diff for 6 months before succumbing to it in May 2013 Lessons • Hospital transmission remains a huge problem • Elderly people remain vulnerable • Infection control is KEY • More treatments are needed

11. Ricky Spiese • Healthy 24 year-old • Grandmother had C. diff while in nursing home • Took Cipro for sty and developed C. diff infection • Resorted to self-administrated FMT after multiple courses of antibiotics failed Lessons • Nursing home transmissions effect visitors • Better treatments are needed • Patients WILL engage in home FMT is they cannot access it

12. MaryAnn Dillon • ER Nurse for 25 years • Atypical C. diff presentation • Abdominal pain without diarrhea • Worked with Peggy’s sister • Peggy’s story was the impetus for MaryAnn to insist on C. diff testing • C. diff cost her 3 months of work Lessons • Healthcare Workers are at risk • Personal stories resonate

13. Chris & Victoria O’Neal • Victoria became ill with C. diff following their daughter’s birth • Victoria’s recurrence led to Chris acquiring C. diff from her • Two years of recurrent C. diff “wrecked their lives” • As part of his healing, Chris wrote “C. diff: A Patient’s Guide” Lessons • C. diff can be transmitted at home • C. diff causes emotional trauma

14. AndiLucas • 4-year old from Zanesville, Ohio • Was never prescribed antibiotics • Pharmacist suggested C. diff • Initial tests for C. diff were negative • It took her 4 weeks to be diagnosed and 5 months and multiple treatments to cure her Lessons • C. diff in children is increasing • Antibiotics may NOT be precipitating factor

15. C. diff is changing • 1 patient with C. diff dies every 5 minutes • 5 patients are diagnosed with C. diff every minute • Infections rates have doubled since 2001 • 10% of patients are colonized at admission • 2/3 of cases are community-acquired • Strains increasingly virulent and deadly • Low-risk populations (post-partum women, children, etc.) are getting C. diff • CDC now classifies C. diff as an “urgent threat”

16. Tip of the Iceberg 14,000 deaths according to CDC 28,000 deaths according to HHS Nursing Home Deaths (Unreported) Community Deaths (Unreported) Sepsis Deaths (C. diff underlying)

17. We have the knowledge & technology… • We know how to minimize transmission in hospitals • High degree of hand washing and sanitation compliance • Vigorous environmental cleaning coordinated with Infection Control • Active detection and isolation of suspected carriers • Antibiotic stewardship • Education of patients and visitors • New technologies from more sensitive tests to UV cleaning technologies are emerging regularly • The missing ingredient is the will

18. Generating the Will to Change is Our Goal 2014 – 2016 Strategic Plan “Educate Globally. Advocate Locally.” • Educate a nationwide audience on C. diff • Empower those harmed by C. diff to advocate for themselves and others • Develop, pass and improve legislation locally • Build organizational capacity to fulfill mission

19. “All you have in this world is each other”

20. All Hands on Deck! • C. diff is a complicated public health issue with several direct and indirect causes • It requires nuanced, manifold approaches • Intra-hospital and inter-facility • Public awareness • Treatment and prevention development • We all have a role to play

21. Working Together

22. Peggy’s Vision A World Where C. diff is Rare, Treatable and Survivable.