My story starts in 2000, when my older son (then aged 4) was diagnosed as neurodivergent. I became immersed in our special education system, volunteering as a room mother and giving back however I could.
Then, in July 2006, our family moved from Connecticut to Glen Allen, VA—5 states away from everything we knew. I didn’t even have local pediatricians for my children yet (they had just had school physicals in Connecticut, so why would I need one?).
Three months later, my younger son, aged 11, went from tossing a frisbee with his brother in the morning to being diagnosed with fistulizing Crohn’s disease during a visit to the emergency department later that night.
Like a deer in headlights, I was ushered into a hospital-based “parallel universe” of sleeping chairs, insurance reps circling to find reasons to send us home, and the 2 shift changes (or what I call the “changing of the guards”) at 7 AM and 7 PM).
At our first appointment with the colorectal surgeon, my son spotted a flyer for a new support group forming through the Crohn’s & Colitis Foundation of America and asked if we could attend. One phone call to the group later, and I was soon cofounding a support group geared toward children and adults in Richmond, VA. I oversaw patient education, which opened my eyes to a whole new world of compound pharmacies, clinical trials, and school systems that misunderstood or ignored 504 plans.
I learned that physicians weren’t always up-to-date on research, that healthcare and nonprofits were infiltrated by politics, and that families deserve unfiltered access to information. As a volunteer, I invited anyone with something valuable to share with patients and caregivers to attend, even if they weren’t on an “approved list” established by the Crohn’s & Colitis Foundation of America.
Despite all efforts, no one could get my son into remission. I started researching how to investigate hospitals and physicians and learned HIPAA-compliant questions to ask and eventually moved my son to a new physician at a major center in New York.
This new doctor suggested a biologic called infliximab. At the time, 15 children had died of lymphomas after using this drug in clinical trials, so no physicians would infuse him, but as this was my son’s only option, and because this doctor was personally seeing success with the drug, they were willing to try—I attribute this to literally saving my son’s life.
Fast forward to 2015, when my son, now college-aged, was turned away from receiving treatment at the hospital—not by the hospital itself, but by the pharmacy benefit managers. They told us that if we walked into the hospital, we would need to pay $30,000 out of pocket, and they wouldn’t give us any other options. Nothing about this made sense to me, and this whole situation later became one of what I call “Five Principles of Self-Advocacy” (or, “if something doesn’t make sense to you, don’t stop until it does”).
I spent 4 months fighting to get my son access to infliximab, but because his therapy appointments were every 8 weeks, he was forced to miss an entire treatment cycle while I spent 24/7 learning about this whole underbelly of health insurance. You can’t just miss a treatment. Over the next 2 years, I took my son to a multitude of specialists and 5 emergency department visits during 1 college semester. All doctors said the same thing: “Take a year off from college, have 4 separate surgeries by 3 different specialists.” All I could think was, how would that solve anything? Until late one night when I was researching and came across a National Institutes of Health grant and clinic run by a rheumatologist.
At the time, I had no idea what a rheumatologist was, but every symptom my son had fit something called hidradenitis suppurativa, a painful lifelong chronic disease (subsequently diagnosed as a breakthrough disease from his 1 missed treatment).
That was the turning point for me. I decided that this cannot happen to another person, not on my watch. I referred to myself as my son’s ventriloquist at that point, but I was determined to figure out a way to teach him and everyone else the skills they need to advocate for themselves.
The goal? To learn before, instead of after, when it’s too late.
I had a unique background in sociology, call center management, banking, marketing, training, small business consulting, and support group leadership. Add to this the experience of parenting a neurodivergent child, and I taught myself to facilitate learning in a way that was interactive, practical, and workbook free.
I knew that I was creating a novel program, and that if I wanted accreditation, I needed a framework that was already established and recognized, so I used data from the Centers for Disease Control and Prevention’s Healthy People 2030 objectives, the new definition of health literacy (which includes the ability to actually use your healthcare), and the World Health Organization.
Then, for the next 7 years, I conducted research. I spoke with people across a myriad of ages and from various socioeconomic backgrounds and started to notice people all said the same thing, that they didn’t understand how to use healthcare. Some didn’t think they even qualified for insurance. One man came back 10 minutes after meeting me with a notepad—he’d written down everything I said but needed clarification on 1 point. That’s when I knew: people are hungry for this knowledge, and they genuinely want to retain it.
My family’s journey ultimately became the foundation for what is now The Healthcare Navigation Project (THNP). In April 2022, we established a nonprofit 501(c)3 called Parent it Forward, which went on to win an award from The Charity Design Company later the same year. With that under our belt, we changed our name to THNP, revamped our logo and website, and set up a donation portal.
“It is clear that Lauren has made a significant impact on the individuals who attend, equipping them with the tools and confidence to advocate for their rights and needs.” —Kerri Englebrecht, executive director, Adrenal Insufficiency United
THNP is a unique disease- and age-agnostic program with a mission to educate professionals, communities, patients, and their families and caregivers to navigate the healthcare system independently. We emphasize building skills that include communication and self-advocacy within an interactive environment using real-world scenarios and an ambassador track through a “teach-back” method to help retain learning, while giving back to family and community members.
The goal of THNP is to take fear away and replace it with empowerment, creating a culture where people know not only how to access care but also how to hold systems accountable.
THNP has partnered with Norwalk High School in Connecticut via Dr. Robert E. Appleby School Based Health Centers and the Human Services Council of Connecticut to bring a healthcare transition program to its adolescent patients. The vision was to provide students with lifetime communication and research skills to navigate their own physical and mental health as they become adults before they need them versus after, when it’s oftentimes too late. The program consisted of 6 modules:
We also offered community service hours, certificates of completion, and ambassador status for educators. Ultimately, 100% of participants learned at least 1 new skill in each module, with 70% learning 3 or more new skills; the retention rate was 86%.
At Sing Sing Correctional Facility in Ossining, NY, we run a 12-week, rolling entry, societal reentry program through the Office of Mental Health. Participants are incarcerated individuals with mental health conditions who are preparing for release.
We meet weekly, guiding them on core principles of self-advocacy along with communication skills and role-play scenarios like calling a clinic, handling a dismissive receptionist, or requesting medication refills.
They leave with concrete tools, including our Mental Health Toolbox: Reentry Edition, Patient Toolbox role-play prompt cards, and even contact-after-release scripts for people to use when calling the various key players in the aforementioned modules. For many, it’s the first time they’ve been told they have the right to ask questions.
We have done several live interactive fundraising events with Adrenal Insufficiency United and have received overwhelmingly positive feedback from participants expressing gratitude for the valuable information and practical advice shared.
THNP does not work by itself. The whole program is designed as an add-on to help get buy-in from your patients, their caregivers, and their families from the beginning.
It is designed to give people true empowerment, which includes the ability to communicate, so that they can actually use their healthcare effectively and make informed decisions for themselves.
In my mind, we will never have true health equity until all people understand how to communicate with each other and understand how to get what they need.
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