Our Fight Will Never Stop
Well, it has clearly been a few months too long since our last update. How quickly time can get away from you. First things first, Marlee is doing fabulous and living her best four-year-old life. Her days are filled with preschool, horseback riding, dirt biking, dancing, gymnastics, and living the life any four-year-old girl should. In late April, the FDA approved Trikfata (aka the game changer or miracle drug for CF'ers) for ages 2 to 5. On May 20, 2023, we received our first package of Trikafta. It was one of the best days of our lives, what we had been waiting for, and the first day that hope filled our hearts.
Two weeks after she started her new meds, Marlee said something to us that will forever stay in our hearts. She looked at us and said, "The medicine is working; I feel better." Our family wept with happiness and joy. For her to feel the benefits of this drug and for her to be able to tell us was nothing short of amazing. From that day on, she has been utterly unstoppable. On Trikafta, Marlee isn't spending her time trying to heal from the latest cold that has taken her down, but instead, she is down at our neighbor's house riding her favorite horse, Ruby. Because of Trikafta, she lives with clear breaths and an open mind. Trikafta has been a gift, a miracle; it is the angel that is saving the lives of those like our daughter, Marlee.
These moments for our CF fighters would not be possible without the continued support of so many. Both the support of our family and friends, but also the support of the foundation. We partner with our local CF Chapter and are very thankful for their support and friendship. In 2023, Team Marlee's Magic has raised over $80,000 for the Rocky Mountain Cystic Fibrosis Foundation chapter. We started the fundraising year with the annual Taste of Tuscany Event, hosted by my Aunt and Uncle (Joel and Melinda Duncan). The event raised over $15,000! Our 3rd Annual Marlee's Magic Golf Tournament, hosted by Ferguson, raised over $52,000. Our family also attended the Xtreme Hike at Vail Resort, and while we didn't make it from the bottom to the top, we did make it from mid-mountain to the top (4 miles), and Marlee hiked it all. We are already looking forward to doing it again next year. These events and the continued fundraising efforts make so much possible for our daughter and the rest of the CF Community.
Over the last few months, we have learned that while the donations are vital for the continued support of the foundation and creating more tomorrows for our fighters, our Colorado CF Fighters and Caretakers have had to use their voice to ensure we have continued access to the drug therapy that helps us achieve more tomorrows. In 2021, the State of Colorado created a Prescription Drug Advisory Board (PDAB) to review high-cost drugs in the State and consider actions to reduce their prices. Within their authority, the Board can set an upper payment limit on a drug, capping the purchase price and reimbursement rate. In August 2023, PDAB announced that Trikafta was among five drugs selected for review. While one can appreciate and understand the intent of this Board, it was devastating when we learned Trikafta was chosen for review. Our access to this drug therapy, which has changed our little girl's life and the lives of so many CF Patients, is now resting in the hands of our State and its selected PDAB Members.
The PDAB review process includes input from the patients and caregivers. On September 27, a PDAB stakeholder listening session was held for CF patients and caregivers. This session allowed us to speak in hopes of being heard. Listening to the stories of many patients and caretakers was devastating; I was a sobbing mess. Marlee was so concerned watching her mom cry, but I could not explain why. But even more upsetting was that no PDAB board member was in attendance. In addition to the listening session, we completed a Patient/Caregiver survey plus submitted our own Public Comment. But even through all this, I questioned if the Board would even read these things. Knowing the fate of Trikafta was in control of this Board, and they could not take the time to listen in, I knew I could not sit quietly.
In early August 2023, CBS Colorado aired a story announcing that PDAB had selected Trikafta for review. To ensure our voice was heard, I contacted Shaun Boyd, who had covered the original story. I needed her to know what we were feeling as patients and caregivers. A feeling of not being heard and a feeling that the State was just checking the box in their process. Honestly, I did not think anything would come of my email to her. But to my surprise, while we were sitting with Marlee for her quarterly Children's Hospital clinic visit (in which she had a rockstar visit!), I got a phone call from Ms. Boyd, and she wanted to meet with us. While it was a scary thought, I knew I had to share our story. Not only for our Marlee girl but for our Colorado Fighters. Our story made the 5 o'clock news the following evening. Marlee girl is a natural. We are forever grateful for Ms. Boyd and her time with us, even if she got sweet Marlee's name wrong. We are thankful for her use of her voice and platform to share our story. While we are forever grateful for all the donations made to the Cystic Fibrosis Foundation, using our voice to bring awareness to this disease is just as important. In moments like this, we need to make sure our voices are heard and our fighters are represented.
So as we wrap up another fabulous year in support of Marlee's Magic and the Rocky Mountain Cystic Fibrosis Foundation, we want to say thank you. Thank you for the continued love and support of our Marlee, our family, the Foundation, and all of our CF Fighters. We look forward to seeing you all in 2024!