Poet and writer Dorothy Parker once said, “London is satisfied, Paris is resigned, but New York is always hopeful.”
Susan personifies that hope. She is the kind of New Yorker who never takes a sick day. Healthy, active, and a frequent traveler, she enjoys everything she can in New York and overseas. A nurse, Susan often puts in long days and weekend shifts, but she loves caring for patients. When Susan sees a patient in need, she goes out of her way to support and assist them.
“I don’t mind working!” Susan said. “I get to speak with patients and let them know how I can help.”
It never occurred to Susan that one day she may be the patient needing assistance.
In 2004, a doctor discovered she had a liver condition called stage 3 primary biliary cholangitis (PBC), an autoimmune disease that affects the tissues within the liver.
The news was stunning. Susan vowed to face the challenge head-on and began treatment to regulate her liver. She was determined to live a long, full life with her husband and three adult sons.
“I’m in good hands,” Susan said. “Though some days I do find myself saying ‘why me?’”
And for years, Susan maintained her hope and positivity, continuing her work and routines. However, a liver biopsy in 2018 revealed the treatment wasn’t working as hard as she was. A top specialist at New York Presbyterian Hospital recommended a new treatment that — if successful — could add decades to Susan’s life. Without it, her future was far less certain. But the high out-of-pocket costs for the treatment was more than Susan could afford.
“I found out it was almost $8,000 a month. That’s impossible!” Susan said. “How could anybody afford that?”
A contact suggested Susan apply to The Assistance Fund’s (TAF’s) Primary Biliary Cholangitis Financial Assistance Program, which provides assistance for copays, deductibles, premiums, and ground travel costs. When Susan got the news she was approved, she was overwhelmed with relief.
“I’m so lucky. I didn’t have access to the treatment before,” Susan said. “I’m so blessed.”
For months, Susan has been symptom-free.
“I exercise every day. I go to work. I babysit my grandkids. I go out with my husband. I’m very blessed for right now that I have no symptoms of the disease,” Susan said.
Now, Susan can look forward to the holidays, where she will safely gather with her immediate family during the pandemic. While this past Christmas did not include her usual large family gift exchange, Susan says she already has so much to feel grateful for.
“I don’t know what I would be doing right now if I hadn’t been directed to you,” Susan said. “It’s the difference between life and death.”
The future is bright. With her treatment, and The Assistance Fund, Susan can look forward to many more years of holiday gatherings and life on Long Island.
“I will be forever grateful! Thank you, TAF,” she said. “TAF has changed my life and my outlook on how long I can be here.”