Educated National Audiences:
- Our Executive Director and co-founder, Christian John Lillis, published a letter to the editor in the New York Post in response to Betsy McCaughey’s editorial about the Centers for Disease Control and Prevention (CDC). Christian’s response illuminated the CDC’s critical role in preventing C. diff infections (CDI).
- Co-founders Christian Lillis and Liam Lillis presented at Merck’s Patient Forum, which was webcasted to the company’s 70,000 employees worldwide.
- PLF partnered with the Antibiotic Resistance Action Center, Milken Institute School of Public Health, Consumer Reports, Small-r Films, and Delmarva Foundation to co-host a Washington, DC screening of Resistance, a documentary about the history and future of antibiotic resistance.
- Christian presented a webinar about the patient experience of C. diff for Missouri’s Mercy Health System clinical leadership.
- Christian presented on webinars for Hospital Corporation of America, one of the largest healthcare systems in the world with 168 hospitals and 116 freestanding surgery centers in the United States and United Kingdom.
- Christian presented on a webinar for Premier, Inc. a healthcare improvement company uniting 3,750 U.S. hospitals and 130,000 other providers.
- As part of the 2016 Get Smart About Antibiotic Week, PLF partnered with the Centers for Disease Control and Prevention (CDC) to create a video about our namesake, Peggy Lillis.
- One notable Advocate, Meghan Mimnaugh, gave her first ever Partnership for Patients presentation during a Centers for Medicare and Medicaid webinar.
- Advocate Meghan Mimnaugh also joined the Board of Directors of the USA Patient Network.
- PLF increased the Advocates Council presence and built in more opportunities to engage with them on our website, including adding a “Meet Our Advocates” webpage that connects site visitors to Advocates’ stories, videos, blog posts, and contact information.
- Three advocates wrote entries for our blog sharing how their battles with C. diff inspired their advocacy or changed their perspective.
- The Dexter Family held its 3rd Judy Dexter Memorial Picnic and Cornhole Tournament in June, raising more than $11,200.
- PLF played a prominent role in the development and launch of the National Quality Forum’s (NQF) Antibiotic Stewardship Playbook, a tool that will help hospitals implement new requirements for Medicare and Medicaid participation in their antibiotic stewardship program. PLF’s contributions included ensuring the playbook centered patients and families, speaking on a panel about the playbook at NQF’s annual conference, and speaking during the playbook launch webinar in May 2016. In July 2016, NQF featured an interview with our executive director on its blog.
- Our executive director attended a Summit at the Centers for Disease Control with the agency’s leadership and 20 fellow patient advocates. The meeting resulted in several new collaborative initiatives between advocates and the CDC including an increase focus on sepsis and plans to feature Peggy in the agency’s Get Smart About Antibiotics Week.
- PLF represented C. diff patients at the June 2016 public meeting of the President’s Advisory Council on Combating Antibiotic Resistant Bacteria.
- PLF assembled teams of Advocates in both New York and Ohio, and held kickoff calls with both groups to share our timeline and initial strategy to drive state-level policy change.
- Christian joined a technical expert panel for the Agency for Healthcare Research and Quality to develop educational programs to implement the antibiotic stewardship requirement promulgated by the Centers for Medicare and Medicaid.
- Christian also joined the American Institutes for Research’s Person and Family Engagement Advisory Council. The council is designed to guide and center our work in the voices and perspectives of patients and families.
Increased Our Capacity & Built Partnerships:
- PLF received its first foundation grant: $2,500 from the Laura Vogler Foundation.
- Morgan Lewis, a DC-based law firm, agreed to represent PLF on a pro-bono basis to assist with our incorporation as an independent 501c3.
- PLF exceeded our goal of having 500 C. diff survivors and family members engaged with us by December 2016.
Educated National Audiences:
- PLF redesigned its website in July 2015, increasing its value as a key resource for patients, families, providers, policymakers and advocates.
- In the fall of 2015, PLF worked with corporate partner Sanofi Pasteur to film, edit, and distribute a video series highlighting patient perspectives on C. diff infections (CDIs). These videos are a new tool to increase national CDI awareness among patients, healthcare providers, the healthcare industry, and the public.
- PLF worked with Merck & Co., Inc. to develop and distribute an easy-to-understand, patient-focused C. diff brochure, now available in print and online, in Spanish and English.
- PLF participated in the Center for Disease Control’s Get Smart About Antibiotics week. We worked with our Advocates Council to place two op-eds on this important topic, produced special graphics for a mini-campaign on Twitter and Facebook, and encouraged participation in the CDC’s Twitter Chat, reaching 140,000 Americans.
- Christian penned a piece released in the Los Angeles Progressive about the value of grassroots advocacy to advance public health.
- In 2015, PLF held our first-ever Summit for 30 CDI advocates. Over two days, 20 experts from medicine, microbiology, health care policy, media relations, lobbying, and grassroots activism provided knowledge and skills to these new leaders.
- In addition to the in-person training that advocates received, the Summit led to a host of enduring tools, including videos of all Summit sessions on PLF’s YouTube channel, and tips sheets on federal policy, state advocacy and engaging the media.
- PLF has grown and supported our Advocates Council, a group of 25 volunteers committed to fighting CDIs. PLF worked with the Council to identify shared goals for advocacy, communication, and fundraising. In addition to placing two op-eds, the Council’s accomplishments over the past six months include:
- Several Advocates participated in the successful campaign to ensure increased funding for CDIs and antibiotic resistance in the 2016 federal budget.
- One member started the process of joining her state Healthcare Acquired Infections committee.
- Several started peer fundraising campaigns to raise critical support to advance the fight against C. diff.
- PLF leadership recruited four new Advocates Council members.
Shaped Policy: PLF stepped up our efforts to impact policy at the federal level through collaboration and our own campaigns, including:
- Our Executive Director, Christian, attended the June 2015 White House Forum on Antibiotic Stewardship, one of only three patient representatives invited.
- Signed on to letters in support of an array of federal legislative proposals, including ADAPT, LPDA and DISARM.
- Ran online campaigns in support of the Preservation of Antibiotics for Medical Treatment Act and the President’s 2016 Budget Proposal which included significant new investments for the surveillance and tracking of CDI and other antibiotic resistant infections.
- In December 2015, PLF was invited to join in the National Quality Forum’s Antibiotic Stewardship Task Force. This Task Force is designing a “playbook” to help hospitals implement new requirements for Medicare and Medicaid participation. PLF’s focus is helping identify ways for hospitals to engage patients and caregivers in their antibiotic stewardship programs.
Increased Our Capacity & Built Partnerships: To advance our mission and programmatic work, we have accomplished the following operational, fundraising, and capacity-building work over the past twelve months:
- Our Executive Director, Christian Lillis, became full-time.
- PLF held its 5th Anniversary FIGHT C. DIFF GALA in October 2015, raising more than $60,000.
- PLF has started the process of becoming a stand-alone 501(c)3 nonprofit, including identifying the right leadership structure. PLF has also engaged a consultant to help build a new Board of Directors.
- PLF has engaged a foundation relations expert to increase and diversify philanthropic support of PLF programs.
- Finalized & embarked on actions outlined in our strategic plan: “Educating Nationally, Advocating Locally.” This plan encompasses a diverse set of goals that we will accomplish over the next three years, and features a more refined mission and vision.
- New vision: A world where C. diff is rare, treatable, and survivable.
- New mission: Building a nationwide C. diff awareness movement by educating the public, empowering advocates and shaping policy.
- Educated national audiences and empowered advocates: Developed new educational and marketing materials to reach a broader audience, increase PLF’s visibility and make our voice more memorable.
- Shortened our name from The Peggy Lillis Memorial Foundation to Peggy Lillis Foundation and refined our logo to strengthen our brand.
- Presented PLF’s first Advocacy Award to the Dexter family at our 2014 Gala for their work in memory of their wife and mother, Judy, and its first Innovators Award to Drs. Bruce Hirsch and Gerard Honig.
- Shared our story in the media: Peggy’s story was featured in several prominent publications, including:
- Missing Microbes: How the Overuse of Antibiotics is Fueling our Modern Plagues, by Dr. Martin Blaser
- “Medicine’s Dirty Secret” in Mosaic Science, an online outlet dedicated to exploring the science of life
- “Funding Superbug Research is Critical,” a PLF position piece on the need for increased CDC funding for C. diff research, was featured in the Baltimore Sun.
- The CDC’s Safe Healthcare Blog featured an article by PLF’s executive director: C. diff in Our Kids: A Call to Action, which discussed the Journal of Pediatrics report on C. diff infections in children that found 17,000 kids contract the disease every year.
- KevinMD.com posted an article by our executive director, “Public Awareness of C. difficile Must Rise,” on the importance of C. diff being covered in popular media.
- Shaped Policy: Another key focus in 2014 was raising awareness about antibiotic overuse as a key driver of C. diff.
- Presented Congresswoman Rosa DeLauro with our Lifetime Achievement Award
- Our executive director presented at a summit focused on engaging senior advocacy groups in work on antibiotic resistant bacterial infections hosted by the Alliance for Aging Research
- CDC Director Thomas Frieden invited PLF to attend his speech on antibiotic resistant bacteria at the National Press Club. Dr. Frieden even shared Peggy’s story (at 16:30 in video) to illustrate the harm antibiotic resistant bacteria causes.
- Our executive director attended the Gulf Coast C. diff Collaborative in June, and gave a presentation on how doctors and patients can work together to combat C. diff.
- Increased Our Capacity & Built Partnerships: We also focused on increasing PLF’s capacity and building new partnerships in 2014:
- Built Partnerships to Increase Impact
- PLF co-sponsored Selling Sickness: People Before Profits, a conference organized by activist Kim Witzcak and academic Leonore Tiefer. The conference saw 200 activists, academics, journalists, and healthcare workers come together to take on epidemic of over-diagnosis and overtreatment in the U.S.
- Leading vaccine company Sanofi Pasteur interviewed our executive director for a recruitment video for its Phase III clinical trial of a C. diff vaccine. The trial, called Cdiffense, began in August 2013 and is expected to last for three years with participants drawn from 17 countries. The recruitment video, which includes the stories of Peggy and others afflicted by C. diff, is being run in hundreds of healthcare facilities, pharmacies and doctors’ offices in participating countries.
- Increased C. diff Visibility: The foundation continued to play a prominent role in raising CDI awareness in the media, the press, the Internet and social media:
- Published a letter to the editor in the New York Times noting that more than 28,000 people die from CDIs every year (now more than 29,000) according to the Department of Health and Human Services, double the 14,000 number they had recently cited.
- Our executive director was quoted in the Associated Press article, “Hospitals See Surge of Superbug-Fighting Products” and in a series of articles about a local hospital’s failure to report C. diff outbreaks in Stockton, California.
- Published four editorials including “The revulsion over feces: Get over it” on the KevinMD.com website and pieces in Women’s E-news, Park Slope Patch and the Rochester Democrat & Chronicle.
- Our executive director had his first radio interview on Speak Up & Stay Alive.
- Engaged Congresswoman Louise Slaughter, sponsor of the Preserving Antibiotics for Medical Treatment Act (PAMTA) and coauthor of the Affordable Care Act, as first elected to receive our Lifetime Achievement Award and as a partner in efforts to curb the overuse of antibiotics.
- Built Our Capacity
- Welcomed Alicia Skovera, MSW to our National Advisory Council to augment clinical and social work expertise.
- Developed our first three-year strategic plan to focus our organization’s efforts to educate the public about CDIs globally while working locally to advance legislation aimed at pushing the healthcare system to reduce infection rates.
- Developed educational resources:
- The foundation developed and distributed the first-ever public service announcement for CDI that educated more than 50,000 people by the end of 2012.
- Website traffic increased by 255% since its launch in February 2011, and followers on both Facebook and Twitter doubled over the previous year.
- Developed and distributed our own content, including:
- Increased C. diff Visibility in the Media:
- Peggy’s story was featured in the special investigation by USA Today in August 2012, “Far more could be done to stop the deadly bacteria C. diff”. Reaching 1.83 million readers, it marked a breakthrough in coverage of the CDI epidemic. PLF worked closely with reporters to gather stories on 18 Americans who have succumbed to C. diff, illustrating the human costs behind the statistics.
- Two op-eds by PLMF’s Executive Director ran in 2012:
- “How the Affordable Care Act combats preventable hospital infections “ on KevinMD.com, and
- “Health-Care Investment a Key to Creating Jobs, Saving Lives” on Alternet.org, both reaching hundreds of thousands of readers.
- The foundation was also cited and quoted on the Consumers Union Safe Patient Blog.
- Collaborated and built partnerships to increase impact:
- PLF served as a community representative at a conference on CDIs held at the University of Texas Medical Branch in Galveston, Texas, sponsored by UTMB, the Institute for Translational Science, Texas Children’s Microbiome Center, Baylor College of Medicine & Texas Children’s Hospital. The Gulf Coast diff Collaborative of doctors, researchers, and public health experts was formed as a result of this conference.
- Beth Israel Brooklyn, a 212-bed community hospital, began using PLF’s 8-minute “Fight C. diff” video to educate its physicians, nurses, and other staff.
- Participated in and received the proceeds from a walk-a-thon at the Eagle Lake Recreation Community in Gouldsboro, Pennsylvania.
- Participated in a daylong summit at the Centers for Disease Control and Prevention regarding government standards for reporting and enforcement and public involvement in advocacy and prevention efforts.
- Our executive director presented on C. diff as part of a panel discussion at the University of Southern Maine Muskie School of Public Service’s Patient Safety Academy.
- Developed educational materials: Launched the most comprehensive, patient-focused website devoted to providing information about C. diff.
- In seven months, more than 2000 people visited the site, including people from 48 states and 30 foreign countries.
- Produced the first-ever C. diff public service announcement.
- Increased C. diff awareness in the media:
- Appeared in an interview on “A Better Way”, on Manhattan Community Television.
- Appeared in an interview on “Joy In Our Town” a news magazine on Trinity Broadcasting Network.
- Published our first editorial, “An epidemic that states have to stop,” in the prestigious Albany Times Union
- Collaborated and Built Partnerships to Increase Impact:
- Christian and Liam wrote the Foreword to Clostridium difficile: A Patient’s Guide by Christopher O’Neal, PhD and Raf Rizk, MD, the first patient-focused book to tackle C. diff, written by a survivor and his doctor.
- Built partnerships with several patient advocacy and healthcare organizations, including Consumers Union’s Safe Patient Project, The Empowered Patient Coalition, and Moms Against Medical Errors.
- PLF is founded as The Peggy Lillis Memorial Foundation.
- Developed our initial mission and vision, & embarked on the journey to render CDIs rare, treatable, and survivable.
- Hosted our first annual gala, a celebration of the life of Peggy Lillis.
- Peggy’s story and PLF were featured in The Brooklyn Daily Eagle, the borough’s oldest daily newspaper.