Teenage Sepsis Survivor Speaks at Capitol Hill World Sepsis Day Event
September 13, 2023
Amanda Feinman (she/her)
Advocacy Communications & Operations Manager
Washington, DC – Tonight, Members of Congress, Congressional staffers, and advocates alike commemorated World Sepsis Day at a Capitol Hill reception hosted by Sepsis Alliance. The attendees – including Congresswoman Mikie Sherrill (NJ-11) and Alice and Jennifer Tapper –commemorated the global observance, recognized the many millions of Americans impacted by sepsis, and discussed solutions to this urgent public health crisis.
Sepsis, the body’s overwhelming and life-threatening response to infection, impacts 1.7 million Americans every year and takes more lives than prostate cancer, breast cancer, and opioid overdose combined. It is both the number one cost of care (at $62 billion annually) and cause of death in U.S. hospitals, and leaves many survivors with debilitating after-effects.
Keynote speakers at tonight’s event included Alice Tapper, daughter of Jake and Jennifer Tapper, whose appendicitis misdiagnosis led to life-threatening sepsis. As Alice relayed, “In November 2021 I got sick with severe abdominal pain, a fever of 102 degrees, and vomiting. My parents took me to a hospital. They could not figure out what was wrong with me, and why my condition was not improving. At the time, we didn’t know enough to ask the question CDC recommends: ‘could this infection be leading to sepsis?’”
“I am speaking out for others who do not have a voice,” Alice Tapper said. “Hospitals need to believe patients, listen to parents, and act fast if and when they see the signs and symptoms of sepsis.”
As Jennifer Tapper told the group, “My husband Jake and I are so grateful that Alice survived. But we are also angry that her infection was missed by so many doctors over so many days, and she could have died as a result. Patients, families, caregivers, and the medical community need to come together to improve sepsis diagnosis and care.”
“What we saw our child go through was agonizing. The question we still ask: since sepsis is so common, why was it so difficult to get the urgent care that Alice needed? It breaks our heart to think of the other families that have had similar experiences and of those that had a different outcome.”
“If I could turn back the clock, my first words would have been ‘Is this sepsis?’”
Among the top takeaways for federal lawmakers this evening was the urgent need to support and pass Lulu’s Law, a federal bill that directs the Department of Health and Human Services to enact a National Sepsis Action Plan for treating and eliminating the national burden of sepsis. Lulu’s Law is named for Lulu Haynes, who was four years old when sepsis tragically took her life. As Lulu’s father, Lukas Haynes, described, “Lulu had a big, exuberant personality. In January of 2014 she skied her first icy black diamond.” Shortly afterwards, Lulu developed flu-like symptoms. “In the ER, she was tested, she was evaluated, there were no serious concerns.” Following a straightforward appendectomy, her parents were told she would have a normal recovery. “24 hours later, she had died. No pediatrician, no doctor, no nurse, no surgeon ever mentioned the word sepsis.”
Lulu’s Law also authorizes the establishment of state Sepsis Data Trusts, modeled off the CDC’s National Program of Cancer Registries – which helps researchers and experts better understand and more effectively treat cancer. Lulu’s Law was introduced by Congresswoman Sherrill in the 117th Congress and is pending reintroduction in the 118th. Congresswoman Sherrill told the assembled group, “We have a responsibility to protect our loved ones from this silent killer, so on World Sepsis Day let’s pledge to make sepsis a priority.” As Lukas Haynes said, “Lulu would be very proud to have her name on a serious national attempt to treat and save lives.”
“There are still too many questions that aren’t answered,” said Lukas Haynes. “What triggers sepsis? How can we diagnose sepsis more quickly and effectively? How can we improve treatment, to save lives like Lulu’s? That’s what Lulu’s Law will do: help us answer the unanswered questions and save lives.”
In the face of such a deadly and costly condition, efforts by Congress to catalyze solutions are desperately needed. Tonight’s event marked an important milestone in moving the national conversation on sepsis forward.
Alice and Jennifer Tapper and Lukas Haynes are available for interviews, as are Sepsis Alliance medical experts and board members.
About Sepsis Alliance
Sepsis Alliance, the first and leading sepsis organization in the U.S., seeks to save lives and reduce suffering by improving sepsis awareness and care. More than 1.7 million people are diagnosed with sepsis each year in the U.S. with more than 350,000 adults dying and over 50% of survivors experiencing post-sepsis syndrome and other lingering effects, including amputations. At Sepsis Alliance’s founding in 2003, only 19% of U.S. adults were aware of the term “sepsis.” After over ten years of educational efforts for the general public and healthcare professionals through Sepsis.org, Sepsis Alliance Institute, and Sepsis Alliance Voices,awareness is at 66%. Over 30,000 healthcare professionals across the country have attended sepsis webinars and courses to elevate their practice. Sepsis Alliance is the convener of Sepsis Innovation Collaborative, a multi-stakeholder public/private collaborative dedicated to innovations in sepsis diagnosis and management. Sepsis Alliance is a 501(c)3 nonprofit and a GuideStar Platinum Rated charity. For more information, please visit www.sepsis.org and connect with Sepsis Alliance on Facebook, Twitter, Instagram, and LinkedIn at @SepsisAlliance