Natalie (Sparacio) Hayden, a former TV news anchor and reporter, is now a passionate advocate for those living with inflammatory bowel disease. Living with her beautiful family in the Midwest, Natalie shares her personal journey through her blog, Lights, Camera, Crohn’s, offering support and empowering others navigating similar struggles. She is a respected and well-known voice in the IBD community, deeply involved in numerous organizations and (research) initiatives, including the Crohn’s and Colitis Foundation, IBD Moms, IBD Social Circle and the Patient Partner Advisory Committee for the BIONIC study, helping raise awareness and improve the patient experience on a global scale. Natalie has also been recognized for her advocacy work through the Community Cultivator Award. Today, she continues to inspire others by demonstrating that chronic illness doesn’t have to diminish one’s sparkle.
Natalie’s journey with Crohn’s disease and patient advocacy
“I was diagnosed with Crohn’s disease at 21 in 2005. At that point in time, no one was going on social media and sharing about their health struggles. It felt incredibly isolating to have a chronic illness with no cure and have no one to turn to,” she reflects.
While her family and friends were/are supportive, she only knew two people with IBD at that time. Just two months after graduating from Marquette University, the diagnosis blindsided her. Despite this, she didn’t let it stop her from pursuing her dream of working in TV news. Even though she was hospitalized and left on 22 pills a day, she landed her first TV job in Minnesota by October 2005.
She worked in TV news for nearly a decade, keeping her condition a secret to avoid pity. It wasn’t until 2014, after leaving the news desk, that she began sharing her journey openly. “I recognized that my love for storytelling and helping others would help me be the voice I so desperately needed at diagnosis and in the years after,” she says. Natalie also began attending Crohn’s & Colitis Foundation events.
Her advocacy grew stronger after facing several health challenges, including three bowel obstructions in 2014-2015, leading to bowel resection surgery in 2015. While recovering, she vowed to launch a blog on the anniversary of her diagnosis. Despite having no prior experience, she started Lights, Camera, Crohn’s: An Unobstructed View on July 23, 2016. Since then, she’s written over 400 articles, contributed to digital health websites, and served on several patient advisory boards.
“My advocacy work has enabled me to be a stay-at-home mom to my 3 kids (ages 7, 5, and 3) and my life mission is to educate, spread awareness, and all that’s possible despite living with IBD,” she says.
Challenges and solutions to improved patient care
Patients continue to face various challenges in IBD care today. “There are so many challenges we face universally as patients and caregivers, regardless of where we live,” she explains. While awareness about IBD has grown and social media offers more ways to connect, a fundamental lack of understanding persists, even about something as basic as steroid side effects.
She contrasts this with her cousin’s experience when her son was diagnosed with leukemia at age two.
“The day after he got diagnosed in the hospital, the parents were handed binders of information, and child support specialists were in and out of the room.
With IBD, there are no binders—rarely much of an explanation at all. We’re given this diagnosis and just expected to navigate it on our own.”
Through her advocacy, she works to address this gap by simplifying the complexities of IBD for patients and caregivers.
“At diagnosis, we need and deserve more resources and tools to explain everything from what lab figures mean to what different scans and scopes show. We deserve to understand what each type of drug class is and the side effects that can manifest—but also be told what the actual risk vs. benefit is.”
She believes patients should be connected with experienced advocates who share credible information and inspire hope, showing that IBD doesn’t have to define or limit a person’s life. “We need to be told how to find research and participate in research.”
She also highlights the need for healthcare teams to better educate patients, rather than assuming they already understand what they’re facing.
“Patients and caregivers often feel lost and overwhelmed and it’s obvious why—we have a lot of work to do—and the onus should not fall on the shoulders of patient advocates—the care teams need to step up and educate rather than expect there is a medical understanding of what they/a loved on is enduring and going through.”
Additionally, she notes greater access to specialized care, including registered IBD dietitians and gastro-psychologists, underscoring the importance of a more comprehensive approach to IBD care.
Working with your medical team and patient empowerment
Natalie emphasizes the importance of patient empowerment in managing IBD. “I always tell patients they are their own best advocate,” she says. She advises being prepared for doctor’s appointments with questions and bringing a friend or family member for support. Natalie mentions further that connecting with others in the IBD community can also be helpful. “Find a care team you trust implicitly with your health”. Lastly, she stresses communication:
“Your care team can only address concerns they are aware of. If you notice an uptick in symptoms or have concerns send a message through the Patient Portal or to your doctor so they’re aware that something may be awry. Don’t wait until it’s too late and you’re dealing with an acute flare that requires hospitalization.”
Advocacy efforts and insurance coverage for IBD treatments
Appealing insurance decisions is unfortunately a significant barrier for many patients. Advocacy efforts can make a difference.
“I live in the United States so insurance companies and Pharmacy Benefit Managers (PBMs) determine what drugs are covered through the Speciality Pharmacy. Biosimilars are becoming more and more available in the United States and while they are a great option for many, they aren’t a great option for all. Patients in the United States are being told by their insurance companies/specialty pharmacies that they have to switch from their biologic (Remicade, Humira, soon Stelara in early 2025) and placed on a biosimilar.”
Having been on Humira since 2008, she was forced to switch to a biosimilar, Hyrimoz, in July 2024. “I went into it with an open mind but unfortunately after 9 years of deep remission I started experiencing debilitating adverse effects/Crohn’s symptoms for over two months.” With the help of her IBD care team, she successfully appealed her insurance twice and was able to return to Humira in October 2024. “I’ve been feeling great ever since.”
She continues to advocate for policies that protect patients’ ability to stay on effective treatments without forced switches, sharing her experience through her blog to raise awareness. How to Appeal Insurance Decisions and Fight for the Care You Deserve – lights camera crohn’s
Support of medical team for insurance coverage
Medical teams can play a supporting role in navigating insurance coverage.
“My IBD care team listened and was empathetic every step of the way.”
Before the forced switch, they issued an appeal letter, which was denied, but remained closely connected with her through the Patient Portal. “We did extra labs and a telehealth visit and ultimately when I was very sick they told me I could write an appeal letter about my patient experience that they would include with their second appeal letter. I documented every single day in a journal that explained my horrible symptoms so I was able to paint a very clear picture of how badly I was doing on the biosimilar.”
Her care team included this with their second appeal letter. “I’m extremely grateful my care team did not back down and supported me every step of the way, ” she says. Their efforts ultimately led to her successful appeal and return to her original treatment.
Barriers to insurance coverage in IBD and potential solutions
Creating solutions for a better healthcare system is crucial. “The healthcare system in the United States is incredibly flawed, faulty, and complicated on many levels, she says. Patients with IBD often face significant barriers, including limited access to medications, overwhelming costs for treatments and procedures, and the constant burden of navigating insurance and specialty pharmacies,” she says.
She emphasizes that living with a chronic illness is incredibly challenging, often feeling like a full-time job as patients juggle multiple medical specialists and spend countless hours on the phone with insurance companies and specialty pharmacies just to secure the medications they need to survive. “Doctors should determine what treatments, tests, and medications patients are on—not insurance companies,” she says.
While the solutions are complex, she believes systemic changes are necessary to ensure patients receive timely, affordable care without the added stress of battling for coverage.
“The patient and caregiver’s voice is absolutely critical. Legislators need to hear firsthand experiences from us—there’s no one who can do it, but us.”
Strategies for patients navigating denials or appeals for insurance coverage
Patients can take proactive steps to navigate denials or appeals.
“Don’t give up. Document everything. Fight for what you deserve. Take notes along the way and find a provider who is willing to go to bat for you and someone who is not complacent and doesn’t just stop at the first denial. Scrutinize every medical bill and wait to pay anything until you receive your Explanation of Benefits (EOB). Escalate issues when needed and don’t stop until you get what you need.”
Become an IBD patient advocate yourself
Natalie notes that anyone with a chronic illness can become a patient advocate, but it takes a lot of work, a lot of time, a lot of patience, and a lot of grit. She mentioned further that patient advocacy is rewarding and she finds joy in supporting others – although it can feel challenging and taxing at times. “So much goes on behind the scenes that people don’t even see.”
Her focus is on being a reliable, credible and authentic resource for others. “When I write an article I do all the research I possibly can, I’m hesitant to cover certain topics or support brands that I don’t use myself.”
She encourages new advocates to embrace their unique voices. “Think about what you love to do—do you enjoy writing, do you like interviewing or speaking, do you like podcasts—and then tailor your advocacy to what you love the most. There’s no cookie cutter approach that works. Make it your own and try not to feel the pressure of getting followers and how many “likes” posts get. Be genuine, don’t buy your followers—earn them. When thinking about content, share news people can use—think about your hardships or pain points and expand on what you did to overcome. “
In addition, she suggests collaborating with fellow patients to help get your name out there and to boost engagement.
“The IBD community is like a family. We know no border, we are one. Don’t be scared to put yourself out there. Be transparent and honest and everything will fall into place.”