For as long as she can remember, Anna Payne always has actually faced a number. When she was born, that number was 10. When she was a teen, that number was 25. Now, at 29, the number is 41.
The number signifies the expected age of death for Payne, who has actually cystic fibrosis. But that number — which has actually changed because of medical breakthroughs — has actually never discouraged her from living life fully. In fact, it’s been a motivator.
“Cystic fibrosis is a curse, but it’s also a blessing,” she said. “I know that I might not be around forever, but because it isn’t as long as other people, that drives me to want to make sure I leave my footprint here while I’m still healthy enough.”
Payne plans to leave a mark next week as she rallies behind Bernie Sanders at the Democratic National Convention. The Middletown resident was elected in April to serve as a Sanders delegate, an honor she said was offered to just four Bucks County residents.
“This is my convention hair,” pointing out the blue streaks in her platinum blond hair. “I’m ready.”
Payne is taking the week off from her full-time job settling bank credit card disputes at TruMark Financial Credit Union in Fort Washington to go to the convention.
“Most people with cystic fibrosis who are my age don’t work; just being able to work 40 hours a week is a good thing,” she said.
Shouldering a job, volunteer responsibilities and her political endeavors isn’t easy — especially since she requires intense daily treatments to stay healthy. Her doctor said Payne has actually “a will of steel.”
“She was taught very important lessons in discipline and hard work that allowed her to get where she’s gone,” said Dr. Michael Stephen, director of Adult Cystic Fibrosis at Drexel University School of Medicine. “Some people look at it as an excuse to hold them back, but Anna looks at it as a way to help people and touch other people’s lives.”
Stephen said cystic fibrosis is a genetic illness that primarily affects the pancreas and the lungs. Most patients have very little pancreatic function and need to take digestive enzymes before every meal in order to digest food. In the lungs, the illness causes excessive mucus buildup.
“She must constantly fight a battle to get the mucus out,” said Stephen, adding that at least twice a day patients must go through treatments to help clear their airways.
For two or three treatments daily, Payne wears a special vest that creates tension and vibration on her chest, which breaks up mucus and helps bring it to the upper airways, where it can be coughed out. She also uses a nebulizer for 30 minutes a day to help loosen secretions and make them easier to expel from the body.
“I basically walk around with some kind of chronic lung infection all the time, and since I can’t digest food I have to take pills (between two and 13 of them) before I eat.”
Despite her regimen, most people wouldn’t know she has actually an illness. Payne, with the help of friends and families, was able to gather more than 500 signatures to get on the ballot to run as a delegate. She then earned 31,121 votes in the primary election and proudly displays that number on her family’s refrigerator.
Chuck Pennacchio, also a Sanders delegate, said that for a long time he didn’t realize Payne had cystic fibrosis. She’s known for her success, not her illness.
“She’s conducted herself with such poise and high energy,” he said. “Never does she complain. She is always so optimistic and hopeful for the present and the future. She’s an inspiration for me and all the people she touches.”
Payne said there is no time or room in her life for complaints.
“If I have a bad day, I laugh it off. People have it so much worse than I do.”
It is those people who keep her fighting. And she will take her fight to the floor of the Democratic National Convention this week. Though she realizes Sanders will likely not be the party’s nominee, she won’t stop fighting for the issues he backs, particularly a single-payer national health care system.
It was Sanders’ vision for universal health care that first caught Payne’s attention.
“Then, when he threw his hat in the presidential race, I was all in,” she said. Payne believes the Affordable Care Act was a good start for Americans.
“But there are several people left behind because they can’t afford the premiums or deductibles — although they work. Universal health care could solve these problems.”
Under a single-payer system, all U.S. residents would be covered for all medically necessary services, including doctor visits, hospital stays, preventive and long-term care, mental health care, reproductive health care, dental, vision and prescription drug costs. Patients no longer would face financial barriers such as co-pays and deductibles, she said.
Right now, she said, people feel “beholden to insurance companies.”
“Profits shouldn’t be more important than the number of people who can’t live life to their fullest because they are beholden to insurance agencies,” she said.
The present health care system is particularly hard on those like her who have chronic illnesses and face high deductibles and drug costs, she said. One of her medications costs $16,000 a year, she said. While her work insurance covers the bulk of her expenses, she knows there are others who don’t have benefits to cover their care.
Sanders also plans to support amendments banning fracking and taxing carbon emissions. He opposes global trade deals and backs free in-state tuition for higher education.
“I’m excited about everything,” she said. “We have a chance to help shape the future of the party. It’s important that while I’m still healthy enough, I make people aware that there are those out there who need help and that there are reasons to support certain programs — and it doesn’t matter what edge of the aisle you’re on. The most important thing is to get excited and stay involved.”
Marion Callahan: 215-345-3060; email: mcallahan@calkins.com; Twitter: @marioncallahan
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