Lifting an Overwhelming Burden
Anyone who’s spent a winter day in Chicago knows how brutal it can be. That’s why Joanne is thrilled that this winter has been relatively mild, allowing her to get together with family in a safe manner outside.
“It’s in the 30s — we don’t take that for granted!” Joanne said. “I’ve been walking, we had a birthday party outside for my seven-year-old grandchild — lots of games!”
With COVID-19 cases surging, Joanne must take extra precautions. She has a history of heart issues and Fabry disease, a genetic condition caused by the buildup of globotriaosylceramide fat in the body’s cells that causes pain in the hands and feet.
When Joanne was diagnosed with Fabry disease in 2003, she wasn’t surprised. Her father, five of her aunts and uncles, and two of her sisters lived with the disease. But even though her family grew up with Fabry, Joanne says many in the medical community hadn’t heard of it.
“So often we’ve had to explain to physicians what Fabry was,” Joanne said.
For decades, Joanne managed her disease without significant out-of-pocket expenses with the support of her employer-based insurance. And when she retired three years ago, she began to receive her critical infusions at her local hospital. But when COVID-19 hit in March 2020, Joanne was terrified to go to the hospital because of her pre-existing conditions.
“At that time they didn’t know if you could catch it in the vents or the air,” Joanne said.
Joanne faced an impossible choice: enter the hospital and risk COVID exposure or stay home and go without her infusions.
“I had an 8 a.m. appointment and I just couldn’t walk into the hospital,” Joanne said. “I was paralyzed.”
Joanne knew she needed to find a way to receive her treatment safely. Thankfully, she found The Assistance Fund (TAF) through a referral program. Joanne says she was shocked by the simplicity of the program application and how quickly she could get approved.
“It could not have been easier, especially for senior citizens,” she said.
TAF helped Joanne pay for in-home treatment and a specialized nurse to administer her infusions. Best of all, Joanne was able to receive her critical treatment in a COVID-safe environment, providing her with peace of mind.
While Joanne says that this past holiday season, she missed the big family holiday gatherings she usually attends, one thing she doesn’t miss is worrying about whether the costs of her life-saving medical treatments will be covered.
“Receiving the diagnosis and seeing the financial cost is overwhelming,” Joanne said. “You think, ‘how will I do this for a lifetime?’ Because of TAF, that financial burden is lifted, and I can take better care of myself.”
