American Heart Association volunteer Stephanie Dempsey of Blairsville, Georgia, testified Tuesday in Washington about the impact of chronic disease.
The hearing was to begin a conversation on chronic care, according to Senate Finance Committee Chairman Sen. Ron Wyden, D- Oregon.
Dempsey, age 44, said she has suffered from multiple chronic conditions for most of her life. She has coronary artery disease, lupus, a seizure disorder and arthritis. She told the committee that her chronic conditions have led to a loss of independence, financial security and family.
“I have always considered myself a middle class American. I had a well-paying job. I owned my own home and was happily married,” Dempsey said. “Unfortunately, this is not the case today.”
Dempsey was diagnosed with hereditary coronary artery disease at age 21, which has affected all the women in her family. Her only sister died from it at 28. At age 48, her mother had quadruple bypass surgery. Dempsey herself had quadruple bypass surgery at 30 and since then has had another bypass surgery and received 27 stents.
She takes 19 medications a day, in addition to doctor-recommended supplements.
Due to her debilitating conditions, she lost her job and her home.
Fighting tears, Dempsey said that the strain caused by her chronic health conditions also ruined her marriage and that she had no choice but to move in with her parents, who take care of her. Her specialists are more than two hours away and due to her seizure disorder, she is unable to drive and her parents must take her to appointments.
The lack of coordination between her specialists caused one to prescribe a medication for lupus that can cause seizures. He did not remember that she had a seizure disorder. It took several days and “much persistence” to adjust her treatment.
Dempsey said she’s her own healthcare coordinator.
“Although I consider myself an educated person, navigating this maze is very difficult and very exhausting. But it is my life at stake, so I have no choice except to remain engaged,” she said.
It took two years, but she now receives Medicare. Yet, she said she still struggles to pay her medical bills.
Despite her struggles, Dempsey said she felt fortunate to be at the hearing to present her testimony.
“I am confident that you will not forget me and countless other people when you develop policies that will help all of us,” Dempsey said. “Our goals are all the same – to live long, healthy and productive lives.”
Sen. Wyden said at the end of the hearing that it was overwhelming to hear Dempsey’s story.
“My own judgment is that chronic disease has really gotten short shrift in the big debates. I don’t think it happened deliberately,” said Wyden. “What you heard today from Senators again on both sides of the aisle is that those days are over — when chronic diseases get short shrift.”
Photo courtesy of Courtney Doby.
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