Mary Engleton looked at her doctor in shock and asked, “What does this mean? What can I do?”
“It means that you’ll likely always have peripartum cardiomyopathy,” her doctor explained. Unfortunately, there isn’t a cure for this rare type of heart failure that occurs during or immediately after pregnancy.
The doctor proceeded to tell her about the new medications, hospitalizations, and surgeries that awaited her. As a new parent, her thoughts had swirled around making bottles and saving up for college. Now, she had to focus on herself and her enlarged heart.
What followed was more than a year of regular blood tests and heart scans. She was hospitalized four times — once for more than three weeks.
She put her new business on the back burner as she and her family struggled to figure out who would raise their infant son on days when she couldn’t even get out of bed.
According to the Centers for Disease Control, 117 million adults, or about half of the adult population in the U.S., live with some form of chronic disease, ranging from diabetes to heart conditions.
While the term “chronic” is wide-reaching, there is one thing each of these diseases has in common: the cost.
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The Cost of Chronic Disease: Anne Fuges’s Story
Anne Fuges was diagnosed with multiple sclerosis (MS) at 35. A legal assistant and mother of three, she was determined not to let her MS win. However, her mobility and speech gradually deteriorated over the course of five years, and her ability to work suffered. Like Engleton, she put off her career in order to focus on her health.
Fuges estimates that in the last 20 years, she has spent nearly $35,000 on medications.
Today, her monthly prescriptions cost $250. She expects that the monthly costs of her medication will likely go up by $20 to $50 per month every year as her MS progresses.
The Game of Cost Management
For both women, managing the cost of their health care has almost become a game. “Because my husband owns his own business, we have a high-deductible insurance plan we cannot afford to pay,” Engleton says. “Once a week, I call the hospital and ask to negotiate my bills.”
Last year, she negotiated her $8,000 bill down to $6,000, and was put on a flexible payment plan.
Fuges, meanwhile, has applied to several financial assistance programs to help her manage her uncovered costs. When she was laid off, a national MS program provided her with quick funds to help pay her mortgage and utilities while her husband sought additional work.
Another local charity donated an air-conditioning system for their home and equipped her house with ramps for the days when she needs a wheelchair.
Many people with chronic disease must also invest in other equipment, such as medical alert systems.
Other Effects of Chronic Disease
Engleton notes how much more of her life has been affected by chronic illness.
“There’s so much more that you have to think and plan for,” she says. “Last week, I wrote up my will with an attorney and set up a living trust in case my surgery next fall goes wrong. Not only was that expensive, but I ended up at my therapist’s office twice because the depression stemming from my heart condition has caught up to me.”
Fuges says it’s important to stay positive through the pain and suffering. She has some comforting words for people like Engleton.
“Life, when you’re sick, shouldn’t be all about the cost of a surgery or the money going to the hospital,” she says. “While you should plan for what’s to come and do your best to give your kids or family the best life possible, work on building your community and relationships. … Those are the moments and the people that will make your life worth living for.”
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