By: Christian John Lillis
We didn’t have much growing up. Our parents split up in 1978, after which Mom raised us as a single parent. While Mom went to college, we were on welfare and she waited tables to make
ends meet. Despite our economic circumstances, we never felt poor. Our family made sure we had the necessities and even some treats. Mom’s dream was to become a kindergarten teacher. She loved children and wanted to help them succeed in life. However, when we learned how much money nurses made, we begged her to change her major. But our mother knew her purpose in life. She raised us with her values, including that money alone wasn’t something to strive for. What were important were family, friends, community, taking care of each other, and helping others.
When Mom died from a clostridium difficile infection (CDI), we had to put her funeral on a credit card. We eventually received her life insurance and the principal of her retirement account. It wasn’t a lot of money and we would have refused every cent to have her for even one more day. Though Mom died from a CDI, the negligence of her family physician and dentist, contributed to her death. So, shortly after her death we filed a wrongful death suit. It took nearly five years for the case to settle.
We have lots of opinions and feelings about how inadequate the medical malpractice system is in this country, which we plan to speak and write about in the coming months. The lawsuit was never about the money. Basically, we sued because it’s the only way to hold medical providers accountable for malpractice. Before we ever filed, we agreed that we would give a significant portion of any money we got to the Peggy Lillis Foundation (PLF). We also agreed that we wouldn’t accept a settlement that contained a gag order since that might interfere with PLF’s mission. The case finally settled this February.
Words cannot properly convey the awfulness of having your mother’s life be calculated in dollars and cents. Money could never replace our mother, so any settlement would always be both too little and too much. What mattered to us was what how money could strengthen Mom’s legacy.
So earlier this month, we donated $50,000 to PLF. It is the largest gift PLF has ever received. In addition to our love for Mom and her legacy, we made this gift because this is a pivotal time for PLF and the movement to fight C. diff infections.
In most ways, 2015 was a breakthrough year for PLF. We launched our Advocates Council at PLF’s August Summit in New York. We built a new website. Mom’s story was featured in Consumer Reports’ August cover story. We participated in the White House Forum on Antibiotic Stewardship. C. diff is (finally) getting more attention from the medical community and policy makers.
Still, we are a long way from the finish line. Despite progress made, by year’s end an estimated 500,000 Americans will have suffered from C. diff and 30,000 will have died from it. Worse, a global consortium of epidemiologists estimates that C. diff cases will grow 2% a year over the next decade. That means by 2024 more than 850,000 people will get C. diff and more than 50,000 will die from it.
Despite a death toll now surpassing HIV/AIDS and drunk driving, a recent Harris poll commissioned by the Sepsis Alliance shows that only 23% of Americans have even heard of C. diff. By comparison, last year Ebola killed one American and 86% of us know about it.
So we’re redoubling our efforts and we need your help. We are asking that everyone committed to fighting C. diff make a gift today to help match our donation. Doubling our gift will help us to really hit the ground running in 2016.
Next year we will be leading a nationwide, multi-pronged C. diff awareness campaign including a new public service announcement on television, radio and the Internet; continuing to build the movement to fight C. diff by strengthening our Advocates Council; putting forward a federal and state policy agenda; and working in New York and two other states to mandate infection reporting by nursing homes.
Our plans are ambitious but necessary. We will need to grow our volunteer base, advocate more forcefully, and raise more money to succeed.
Christian & Liam