When House Bill 544 passed the Montana Legislature and was signed into law May 1, 2025, it marked more than just a policy victory—it became a symbol of hope and action for families affected by Inflammatory Bowel Disease (IBD), especially those navigating the challenges of very early onset (VEO) IBD.
In the latest article on Lights, Camera, Crohn’s, we hear from the Founder and Executive Director of VEO Guardians, Rachel Markovich. She is not only a caregiver, but a passionate advocate behind the bill. Rachel shares the impact this is expected to have on families, the journey to getting the bill passed, and her hopes for this to set a precedent for the rest of the country.
What is House Bill 544, and why does it matter?
HB 544 is a transformative piece of legislation designed to eliminate two of the biggest hurdles families face when managing IBD: access to timely treatment and the threat of retroactive insurance denials.
The bill ensures that when a medical provider can present two efficacy studies showing a biologic treatment works in children of a comparable age, insurance companies must approve the request. This provision reduces dangerous delays in treatment— a common and deeply frustrating barrier for caregivers and physicians alike. Click here to see the news coverage.
The second part of the bill protects all Montanans by prohibiting insurers from denying coverage retroactively after a medication has already been approved. In the unpredictable world of chronic illness, this gives families something they often lack: peace of mind.
How did this caregiver become involved?
For Rachel as a mom of a son with VEO-IBD, this fight is personal.
“My son was diagnosed with VEO IBD at just 22 months old,” she shared. “Thankfully, his health has stabilized, and that gift gave me the time and perspective to help others.”
What began as outreach soon turned into a movement. With the support of VEO Guardians and a network of dedicated advocates, she testified in Helena and worked tirelessly to humanize the legislation. “It was an emotional and transformative journey—one built on compassion and resolve. It’s not just about celebrating a win—it’s about raising awareness for what this means for families across the state.”
The mission of VEO-Guardians was previously featured on Lights, Camera, Crohn’s, you can check out that article here.
Kim Longcake is an Advanced Nurse Practitioner in Montana. She says, “It is such an honor to be a part of this amazing organization. I am proud of the work we have done to protect access to care for Montana children and grateful to have a resource for families in their greatest time of need.”
Will this bill inspire similar legislation across the country?
Yes—and momentum is building.
“We’ve been in touch with national organizations like the EveryLife Foundation and the Crohn’s & Colitis Foundation. They’re excited about what we’ve accomplished here in Montana, and we’re developing a strategy to help other states follow suit.”
For those interested in bringing similar legislation to their own communities, the message from Rachel is clear: “We’re here, and we’re ready to help.”
How can people get involved, especially if they don’t live in Montana?
“Stay connected with us,” she urged. VEO Guardians regularly shares updates, advocacy tools, and family stories through their social media channels and newsletter.
Anyone can reach out directly for guidance, support, or to get involved in expanding the model elsewhere. “We want to help others navigate this path.”
What has VEO Guardians accomplished so far?
The organization recently helped a family avoid a $6,200 charge when a job loss disrupted their child’s insurance—ensuring timely infusion treatment. They’ve signed a reimbursement agreement with Community Medical and are working to secure similar partnerships with Montana’s two other major hospitals.
They’ve also welcomed a new board member with expertise in family counseling and plan to launch free counseling services and 504 plan support on their website soon. And for children newly diagnosed with IBD, a teddy bear delivery program is already in motion.
“Every step we take is rooted in our mission to support, uplift, and empower the IBD community.”
Final Thoughts
“In the darkest moments, we often find the strength to shine the brightest,” she said. “This bill is proof of what compassion and community can accomplish. To anyone facing this diagnosis—you’re not alone. There is a path forward, and we’re walking it together.”
Rachel tells me local gastroenterologists in Montana whom she’s spoken with are thrilled the bill has been signed because it removes the red tape and allows doctors to do what they do best—treat their patients. It’s a win for everyone.
“It fills me with pride, gratitude, and hope,” Rachel said. “What once felt like a long shot is now a new reality for countless families. I know it will ease the road for many who follow.”
To stay up to date or get involved, follow VEO Guardians on Facebook and Instagram, or visit their website to sign up for their newsletter.
