Soccer team in a huddle

A Journey in Patient Advocacy

Feature Article | August 4, 2017 by Aimee Norman

Once you get past the medical magnitude of what befell SAP employee Julia Wagner’s family, you are compelled to listen to the rest of the story about her life-changing journey toward sustainable and meaningful change.

After moving to the Philadelphia suburbs in 2004, “our family slowly started getting sick,” tells Julia, vice president of Business Transformation Advisory in Strategic Industries for SAP SuccessFactors. Her once energetic six-year-old daughter developed stomach aches, leg pains, insomnia, language regression, and separation anxiety that accompanied a drastic personality shift. Her younger brother’s cognitive deterioration (20 IQ points they were told) came with “seizures, cardiac issues, facial tics, and excruciating pain” in his five-year-old body.

Julia herself went from being the CEO of a boutique consulting firm to “a dementia-like state where I could no longer string a sentence together; forgot what I was doing from one moment to the next; had migraine-like headaches, nausea, and muscle twitches; severe balance issues…” She was barely 40. Her husband mysteriously — mercifully — escaped the severity and was the sole support for the family.

But it sent Julia on a path with a focus and energy reminiscent of a mother bear protecting her cubs, to tell as many people as she could about Lyme and Tickborne disease.The culprit? The humble, unassuming tick. Yes, the same pest commonly found on pets and their outdoor-loving owners, like Julia and her family, had successfully and heartbreakingly wreaked medical havoc. The diagnosis — which came after years of doctor visits, hospital stays, and trial-and-error efforts — was a bittersweet relief that exacted a traumatic price.

“I saw that with the right knowledge and diagnostics, clinical openness to emerging science, and patient-focused treatment strategies, diseases that severely impact quality of life could be reversed.” Most concerning to her was the neuro-cognitive and psychiatric impact on children, like ADD/ADHD, OCD, and other cognitive learning disabilities that are reversible with proper diagnosis and treatment.

Sharing her research and experience with other parents, their children, and adults who were sick and looking for answers compelled Julia to start a support group in her local county with an eloquently-stated goal of “providing credible research, and information to support patients in their health journeys at the edge of emerging science.” She tells how the group welcomed an 11-year-old who was having hourly seizures, and a 21-year-old, wheelchair-bound by an unknown illness; both are now healthy.

The support group was merely the beginning. In time, Julia took her mission to astonishing, and surely at the time, unforeseeable heights:

  • Launching the legislative advocacy group LymeActionPA, which prompted her to “track down and call everyone I could find across the state of Pennsylvania who was interested in these diseases.”
  • The creation and passing of Act 83 that acknowledged the severity of Lyme and Tickborne diseases, largely the result of her local and then state-wide support group efforts.
  • Formation of a state-level non-profit, PA Lyme Resource Network (PALRN), which has 25 groups across the state and hundreds of volunteers leading change with a “support-group-in-a-box” grassroots approach.
  • Launching a medical practitioner Community of Practice to accelerate practice sharing, and clinical knowledge/experience.
  • Appointment to the PA governor’s task force for Lyme and Tickborne disease
  • Pennsylvania’s first-ever medical conference dedicated to Lyme and Tickborne diseases in partnership with the International Lyme and Associated Diseases Society, the only tick/vector-borne disease-focused medical society, and Drexel University’s School of Medicine.

Her most recent victory was the May 2017 passing of Pennsylvania House Bill 174 that is designed to expand insurance coverage to provide patients with broader testing and treatment options. “This would reduce treatment delays, improving the chance of a true cure,” Julia says. The bill is now Senate-bound.

At the 2014 signing of Act 83, Julia, Sarah and Peter (all far left) joined parents and children impacted by the disease, and staunch government advocates.

You may be wondering: Julia and her children, with the correct and expert medical intervention, did get well, though her son has recently suffered a relapse for which she has taken advantage of SAP’s medical leave to see to his near full-time care.

Amid all this, there is a place where her personal passion converges with her professional passions for Big Data, analytics, and innovation, allowing her to live SAP’s mission of improving people’s lives. PALRN is now at the center of the largest patient-driven Big Data project on persistent/chronic Lyme disease in collaboration with researching universities. “Maybe one day we’ll be able to leverage the kind of innovation, big data and technologies SAP has driven to catalyze forward momentum in these diseases.”

What’s next for Julia? Putting the fact that she is completing her PhD in neuro/industrial organizational psychology aside, she is also dreaming of launching a clinic to serve children, youth, and young adults based on the most advanced knowledge and technologies available. Consider that the recommended Lyme test is 30-year-old technology that misses half the cases of the disease and fully misses strains that are being transmitted by ticks in the state of Pennsylvania.

“I have seen too many struck down by these diseases when all it takes is knowledge,” she says, adding: “This would be a research and teaching clinic, while diagnosing, treating, and giving patients the best possible care available today. The clinic would help restore lives and futures.”

Helpful Resources

Leave a Reply