Contributed Photo/Courtesy Amanda Carter: The Carters spoke with a representative of Congressman Tom O’Halleran while they were in Washington D.C. Pictured are, from left, Ashley Mahoney from the CF Foundation, Jeremy and Rachel Olimb (who have three boys with CF – one passed away from CF in 2014), Sally Adams from Congressman Tom O’Halleran”s office, and Amanda and Dustin Carter.
Editor’s Note: The following is an account by Amanda Carter of an event she and her husband, Dustin Carter, took part in Washington D.C. in February to raise awareness of Cystic Fibrosis, which is a hereditary disease that affects the lungs and digestive system.
By Amanda Carter
WASHINGTON D.C. – Recently, my husband, Dustin Carter, and I had the honor of participating in the March on the Hill in Washington D.C. #CFAdvocacy, with the Cystic Fibrosis foundation during Rare Disease week.
I was asked to be apart of this by the executive director of the Arizona chapter. The purpose of this March is to speak with congressional members and senators to tell our stories about Cystic Fibrosis and ask for their continued support for affordable healthcare, robust funding for the Food and Drug Administration (FDA), and $44.7 billion for the National Institute of Health (NIH).
Last year, there were numerous pharmaceutical companies who had developed new antibiotics that were ready for approval by the FDA but went bankrupt because there weren’t enough funds.
Antibiotics are crucial to Cystic Fibrosis (CF) because of the frequency of needing them, but also for the many options. In case of resistance to them, the doctor can prescribe a different one. I was happy to have Dustin with me because he knows politics and I know medical. So, we kind of tag-teamed it.
We met with Senator Martha McSally (actually had coffee with her) and constituent advocate for Congressman Tom O’Halleran, as well as four other congressional members.
Back on Aug. 10, 2019, the Cystic Fibrosis Foundation selected me as captain over District 1, the largest district in Arizona, and one of the largest in the nation. My purpose is to raise awareness and continue meeting and following up with individuals who represent our state or District 1.
My daughter, Annabelle Marie Self, was born with the hereditary disease Cystic Fibrosis, a disease that can cause thick, sticky mucous in the lungs, which acts as a magnet to bacteria. Cystic Fibrosis also causes abnormal pancreas function; it requires enzymes supplements to properly absorb nutrients. She was diagnosed by the newborn screening. She spent most of her first year at Diamond Children’s Hospital, due to numerous lung infections and failure to thrive. At 2 months old, she had a feeding tube/mickey button placed to help her gain weight. At that time, her doctors told me she wasn’t going to make it because she had been on strong antibiotics (her body built up resistance to) and 10 liters of oxygen, and refused to eat. At 10 months of age, I found out about the Smartvest, standard treatment of care for Cystic Fibrosis. It’s a vest/machine that compulses rapidly to break up mucous in the lungs and help open the airways with the assistance of pulmonary medications. Annabelle got better from that and avoided “tune-ups”, just routine antibiotics, for almost six years. She wasn’t expected to live past the age of 5, according to her doctors. She just turned 9 on Tuesday.
Last April, the school called me to inform me Annabelle was having a hard time breathing. I took her to the ER, where they told me she was having an asthma attack. I argued with the doctor saying she doesn’t have asthma she has CF and needs an x-ray and most likely antibiotics. The doctor refused. I took her to her specialist at Phoenix children’s hospital, where we got x-rays and found that her airways were restricted and thick sticky mucous was blocking (she was suffocating). She did intensive antibiotics, along with biopsies of her lungs, where they found six different ghost bacteria that weren’t showing up on other tests. She was admitted to the hospital for five days, and went home with a PIIC line for a six-week course of IV antibiotics. Again, the urgency for developing new antibiotics is critical because there was only one antibiotic compatible to treat one of the bacteria, and it was not recommended for pediatric patients.
Annabelle receives overnight feeds with a high-fat formula to help her gain weight and eats orally throughout the day. She takes 15 different medications as well as breathing treatments morning and night. Looking at her, you wouldn’t know anything is wrong. Her CF team at DMG has been amazing and on top of her care. I would like to thank the foundation for all that they do to continue adding tomorrows for those living with Cystic Fibrosis. Without them, we wouldn’t be able to get half of the necessary medications she needs to survive.
Annabelle is awaiting approval for a clinical trial of the new triple, Trikafta, which was approved by the FDA in 2019. She is currently on Orkambi, a drug that refuses the symptoms of CF, improves lung function, and helps improve weight gain.
I’m currently working on a project to collect data of those living or diagnosed and moved in District 1 with CF. I will present this to our legislators. Annabelle is the only CF patient across four counties which I have found.