An Unexpected Encounter
The American author Robert Collier once said, “All of us have bad luck and good luck. The man who persists through the bad luck — who keeps right on going — is the man who is there when the good luck comes — and is ready to receive it.” For Luke, his life of luck, good and bad, began before he was born.
In the 1970s, his father was diagnosed with a little-known disease called hereditary angioedema (HAE). The disease is found on a dominant gene, meaning there is a 50–50 chance he would pass it along to his children. Sure enough, Luke began experiencing symptoms in his 20s and tests confirmed his HAE diagnosis. But that did not stop Luke from staying positive.
“On the HAE scale of one to 200, mine is only at an 85. My dad’s is 140,” Luke said. “But for both of us, treatment is incredibly important.”
For years Luke’s employer-based insurance covered his treatment, which allowed him peace of mind and the ability to build his career. But when Luke’s employer, a large defense contractor, changed insurance providers, he learned that his treatment was no longer covered. Overnight, Luke’s out-of-pocket medical expenses increased twentyfold.
“My family had to structure our lives differently around this medicine I have to take,” Luke said.
Desperate for help, Luke turned to a Facebook group of HAE families and doctors. He explained his circumstances in hopes of a lucky break. Was there a place where he could find discounted medication? Would he need to find the medication overseas? For Luke, ending his treatment wasn’t an option.
“It’s essential. It’s so successful that it’s almost like I don’t have HAE,” he said.
One community member, Donna, told him there was hope: A nonprofit, The Assistance Fund (TAF), offered assistance for copays, deductibles, premiums, and ground travel costs related to FDA-approved treatment for people living with HAE.
“It was a complete blessing — TAF staff were super helpful and answered every question I had,” Luke said. “It was life-changing.”
Once a patient is enrolled in a TAF disease program, their coverage lasts the entire calendar year. There is no cap on the amount of assistance a patient receives in a calendar year after they are approved and enrolled in a TAF disease program. When winter arrives, Luke will be ready to apply for Reenrollment, as he has for the past three years. He says the ease and convenience of the Reenrollment process is one less thing he has to worry about.
“TAF Reenrollment is easy and straightforward,” Luke said. “It’s just a pleasant experience.”
Luke’s wife Angie recently volunteered at a fundraiser, where she struck up a conversation with her table partner, Kristine Schaffer. Angie asked Kristine about the logo on her shirt, and Kristine proudly told her it was for The Assistance Fund, where she works as Executive Assistant to the President and CEO.
“Oh my God! I love The Assistance Fund!” Angie replied. “We are so thankful for you.”
Angie shared Luke’s story with Kristine and the two formed an instant bond. As luck would have it, Luke, Angie, and their two young daughters live in Central Florida, just minutes from TAF’s headquarters in Orlando. Luke is determined to show his gratitude by bringing donuts to the office when life returns to normal after the COVID-19 pandemic. He says it’s the least he can do.
“TAF isn’t like other organizations,” he said. “There is a very recognized spirit of wanting to be helpful.”
