- In 2019, the Centers for Disease Control and Prevention again designated CDIs as an urgent public health threat requiring “aggressive action.”
- 475,000 Americans incur a CDI each year averaging one new infection every minute
- 223,900 require hospitalization
- 29,000 die annually
- 20,000 cases of CDI in children
- Historically, citizen organizing around infectious diseases has been quite limited
- Excepting, HIV/AIDS and meningococcal disease, there is a dearth of patient- and citizen-driven advocacy around infectious diseases in the United States
- Infectious diseases – by their very nature – are hard to organize around, primarily because patients either get well or perish from acute infections
- The lack of advocacy around infectious diseases, including CDIs, had led to an array of suboptimal outcomes, including minimal funding for research and clinical practice, low public awareness, over- and misuse of antibiotics, and decreased public and private investment in developing new treatments
- PLF believes that patient and citizen advocacy, combined with efforts by public health experts, healthcare workers, and facility administrators, is the key to reversing the growing harm caused by CDIs
- Robust citizen and patient-led movements have had enormous success in driving change for HIV/AIDS, meningococcal disease and, more recently, a host of rare diseases
- These movements have been critical to raising awareness of risk factors, symptoms and prevention; lobbying state and federal agencies for regulatory reform; securing increased funding for research and treatment; and humanizing disease sufferers to the broader public
- Both CDI survivors and those who’ve lost a loved one are poised for exactly this kind of advocacy
What Advocates Can Do
There are a range of issues and activities that Advocates can choose to work on, from raising public awareness, participating in educational seminars for healthcare workers, lobbying to pass legislation to increase transparency and accountability, providing emotional support to current CDI sufferers and caregivers, and raise money and visibility for PLF. While Advocates may engage in all of these activities, they may also choose to focus on a particular area, depending on their interests, skill-set, and the amount of time they have to volunteer.
To harness and catalyze the passion of Advocates, PLF provides a range of trainings, support and resources. These resources include:
- Tools to help support your work and identify allied organizations for additional tools/resources.
- Information on the National Picture, including what is happening in your state and across the US.
- Messages to share with different audiences: policymakers, healthcare providers and your friends and neighbors.
If you’re interested in joining PLF’s Advocates Council first download and review the Advocates Council Volunteer Description.
Then click here to express your interest in the PLF Advocates Council. Once you fill out the brief survey, someone from PLF will contact you.