Thursday, April 28th is a very important day for those of us who suffer from IBD, our family members and caretakers. Tomorrow, Virtual IBD Day on the Hill is happening. What does this mean? A few of us will have the opportunity to sit before members of congress, and lobby for Safe Step Reform, and Medical Nutrition Act. It's critical we help get these bills past. Currently, we're subject to impossible challenges to secure the care we need. Let's change that shall we?
As outlined by the Crohn's and Colitis Foundation, please see what we're lobbying for below:
Step therapy, also known as fail first, is a practice used by health insurers requiring a patient to try and fail on one or more insurer-preferred medications before approving coverage for the treatment selected by the patient and their provider. S464/HR 2163, the Safe Step Act would strengthen access to care by requiring employer health plans to establish a clear and expedient exceptions process including circumstances in which patients should be approved to skip step therapy protocols when the protocols are medically inappropriate.
Medical nutrition is an important treatment option for patients with Crohn’s disease and ulcerative colitis that is often not covered by insurance. HR 3783/S 2013, the Medical Nutrition Equity Act would ensure that private insurance, Medicaid, CHIP, Medicare, and the Federal Employees Health Benefits Program cover medically necessary foods if they are prescribed by the patient's provider.
I've had the pleasure meeting, and teaming up with four other individuals who are also extremely passionate about advocating for patient rights. Without further ado, I'm proud to introduce TEAM WISCONSIN.
Meet Megan. She's our team leader, and advocate extraordinaire. Megan is a force to be reckoned with, and her accomplishments speak for themselves. In Megan's words.
I was diagnosed with Ulcerative Colitis in 2002, just months before leaving for my freshman year of college. As much as I tried to enjoy my time and have a "normal" college experience, my disease took over and got worse and worse, while I struggled to navigate so much unknown, in a city away from home, without a support system in place. It took several years of near constant symptoms to find a treatment that worked for me, and since then, I've gotten involved in patient advocacy and volunteer support.
Most near to my heart are the organization I co-founded, The Great Bowel Movement, and my role as LIT program lead at Camp Oasis Wisconsin.
What's most notable about my diagnosis and treatment story is the fact that I had to try every approved treatment on the market until the very last one, which thankfully was the right one for me - but, that treatment wasn't even approved when I was diagnosed! The one thing that gave me my life back wasn't even an option at first. Now, of course, there are many more on the market, and patients still struggle with the access to get the right med, on the right schedule, as recommended by their medical team.
Next up, is Makenzie. Makenzie brings an energy to the team that's infectious. She exudes positivity, and and plays a key role as she shares her experience as caregiver for her sister who has Crohn's disease. Learn more from Makenzie herself, below.
My name is Makenzie Diffley, and I'm an outgoing, passionate, and loving individual that enjoys using my experience and skills to help others! My involvement with the Crohn's & Colitis Foundation began in 2009 when I ran the Las Vegas Rock 'n Roll Half Marathon alongside my sister, and my dedication to the organization continues today as I'm the Fundraising Campaigns & Volunteer Engagement Coordinator for the Crohn's & Colitis Foundation's Wisconsin Chapter. My older sister, and only sibling, has Crohn's Disease, so I've made it my life's mission to find a cure for her and the millions of others in the IBD community. Outside of my professional endeavors, I enjoy running my home bakery business and spending time with my amazing husband, adorable pup, family members, and friends.
Luke is our youngest IBD Warrior, and the bravest. He has endured so much at such a young age, but one could never tell. Luke marches on like the true champ he is. Let's meet Luke.
Hi, I’m Luke. I’m 14 years old and have had Crohn’s for 6 years. I started having symptoms when I was 6 or 7 years old. I was finally diagnosed with Crohn’s when I was 8 because I started to lose weight. I’ve spent weeks in Children’s hospital, had surgeries, multiple colonoscopies and endoscopies. Today I receive infusions every 6 weeks to keep my Crohn’s in remission and take amitriptyline and other vitamins and nutrients daily. I’m a blackbelt in karate, participated in the State Math meets, like to play basketball, and hang out with my family and friends, but some days it’s hard because my stomach hurts so much that I don’t even want to go to school.
In my opinion, there's no greater love than the love a parent has for their child. Our next team member displays that affection (alongside his wife) as he fights for getting the care his son needs. Meet Todd.
I'm Todd Ericksrud, Luke's biggest cheerleader. My wife Katie, is Luke's biggest caregiver. She's gone through a lot with clinics, therapies, diet, infusions, labs, appointments, schools, dealing with COVID protocols ... and everything in between. I have been involved in a few things with the Crohn's & Colitis Foundation - namely Take Steps in Green Bay, and last year Luke and I participated in the Virtual Day on the Hill to share Luke's story with lawmakers to get funding for some specific bills We met a few people in the state that are big advocates and Luke gained a lot of confidence in talking about his IBD.
Now that you've met our team, I suppose I will introduce myself.
My name is Suzy. I am the newest member of TEAM WISCONSIN. I am a wife and mother to 3 awesome kiddos! I also happen to have Crohn's disease. I am a freelance blogger, and started this blog as a way to cope with my disease. It has turned into a passion project to create awareness, and support for others who suffer from IBD. I also volunteer with the Crohn's and Colitis Foundation. I have fundraised for Take Steps, and have run several marathons/half marathons in support of the foundation. I am passionate about advocating for myself, and the more than 3.1. million IBD Warriors out there. I am incredibly excited to be part of such a wonderful team of people, and help represent Team Wisconsin at Virtual IBD Day on the Hill. Thanks for having me, and let's do this!!!
IBD Day on the Hill is our chance to advocate for Step Therapy Reform and the Medical Nutrition Act. Our schedule includes a day of meetings with Wisconsin senators (Scott Fitgerald, Ron Johnson, Mike Gallagher, Gwen Moore, Tammy Baldwin and Mark Pocan), where we will each share our story, and ask for the adequate care we need. These efforts don't stop on Thursday. Contact your local legislators, and please help us raise awareness on these issues. If you're out there and you have IBD, take care of someone with IBD, or know someone with IBD, and want to get involved, there are several ways to do so. I encourage you to contact your local chapter with the Crohn's and Colitis Foundation to discuss all of the wonderful opportunities. Until then, wish TEAM WISCONSIN luck as we take on members of congress. Stay tuned for a follow up blog post.
Be the change you want to see in the world
-Mahatma Gandhi
