Melissa has her hands full. She is a single mother of two active and busy teenagers. Sarah is about to turn 18, and Mason is 15. Both kids have cystic fibrosis. Sarah was diagnosed when she was 18 months old and hospitalized with pneumonia. Mason was diagnosed at birth. They are patients at Phoenix Children’s Cystic Fibrosis Program and under the care of Gerald D. Gong, MD.
“Sarah and Mason are relatively healthy and active kids,” Melissa said. “Sarah has never been hospitalized since her diagnosis and participates in competitive gymnastics with no limitations. Mason has only been hospitalized once and plays baseball year-round. This is due in no small part to the amazing team at Phoenix Children’s who have been treating Sarah and Mason all along.”
A Remarkable Medication Becomes Difficult to Access
Sarah’s and Mason’s active lives also depend on multiple medications. Melissa said, “It is imperative to my children’s health that they receive their prescribed medicines without lapses or delays.” TRIKAFTA™ is one of those medications. “They’ve been on the drug since it was released,” Melissa said. “We’ve experienced remarkable results. It’s the closest thing we have to a cure right now.”
Until recently, Melissa had to work with four different pharmacies to access Mason’s and Sarah’s medications, even though her kids are doubly insured. Prescription formularies change yearly, forcing Melissa to renegotiate with each pharmacy on the medicines they will provide for her children.
In the middle of 2022, Melissa heard from all four pharmacies that the rules for TRIKAFTA had changed. “I fought for three weeks with four pharmacies and two insurance companies to receive a medicine that is vital to sustaining my kids’ lives,” Melissa said. “I was at the end of my rope.”
At some pharmacies, her co-pays for TRIKAFTA were now $7,500 per child. Other pharmacies told her that the kids were not covered for the drug. She was frantic with worry.
Phoenix Children’s Specialty Pharmacy Comes to the Rescue
Out of the blue, Melissa received a call from Meredith Reams, CPhT, specialty pharmacy patient liaison at Phoenix Children’s Pharmacy Services. Meredith had heard about Melissa's challenges and wanted to help through Phoenix Children’s Specialty Pharmacy Program. Melissa did not expect Meredith to be successful, but she was in for a surprise. Meredith stepped in and offered critical help at a time when Melissa’s family really needed it.
Melissa shared, “Meredith was able to do within three days what four other pharmacies were still trying to figure out after three weeks! In three days, I had TRIKAFTA in my hands for both kids with a $0 copay. Words cannot express my gratitude and appreciation for this service!”
Now, Melissa has moved two more of Mason and Sarah’s specialty medications to the Phoenix Children’s Specialty Pharmacy Program. Meredith will contact her when refills are due and will help Melissa make the best decisions each new year, when formularies for those drugs change. Melissa said, “Having to deal with fewer pharmacies is such a gift. When you have the weight of the world on your shoulders, even taking an ounce or two off feels wonderful. That’s what Meredith does for me. What a godsend.”
“It has been a pleasure working with the [redacted] family. As a liaison, my job is to make healthcare easier, and I am thankful that I was able to assist them because I know that healthcare can be frustrating,” Meredith explained.
The Specialty Pharmacy Program
Phoenix Children’s Specialty Pharmacy offers services that simplify every aspect of our cystic fibrosis patients’ medication needs. The pharmacy helps families find financial support, navigate insurance requirements, coordinate with doctors and manage refills. Specialty Pharmacy patient liaisons work with our cystic fibrosis patients’ healthcare providers to integrate care and take some stress off their families’ shoulders, just like Meredith did for Melissa.
“I am a single mother to two teenagers with cystic fibrosis, and that in itself is stressful enough,” Melissa said. “No family, parent or patient should have to beg and plead for specialty medications vital to sustaining life. Yet, it happens every day. Phoenix Children’s Specialty Pharmacy offers a seamless process for accessing important medicines. I wish more families knew about it.”
Thanks to Meredith Reams and the Phoenix Children’s Specialty Pharmacy Program, Melissa has a little less to worry about today. She wants to help other parents of chronically ill kids feel the same. She shared, “I want to tell them to hang in there. You’re not alone. There are programs at Phoenix Children’s designed to help you. Educate yourself; stay strong and continue to fight for your kids.
“I also want to thank Dr. Gong and the team at the Phoenix Children’s Cystic Fibrosis Program. Having direct access to not only the physicians but a nutritionist, mental health professionals and other specialty providers working together to treat my children has been a wonderful experience,” Melissa said.