Arlene Burman: from being homebound to cross-country travels
Arlene Burman’s symptoms first started in 2000, and due to her family history of colon cancer, she knew she was due for a check-up.
The results from her colonoscopy came back and she was diagnosed with non-specific colitis, or inflammation of the colon—not cancer.
Shortly after, she lost her best friend, sister-in-law, and mother, all within a 14-month period. She then began experiencing severe symptoms. When she returned to the doctor, she was diagnosed with Crohn’s disease, an often debilitating and painful type of inflammatory bowel disease.
Her diagnosis was devastating. Not just for her but for her entire family, including her husband, Jay, who is a retired schoolteacher. During a 13-month period following her diagnosis, she would only leave the house if she could map out all the available bathrooms along the way to her destination. This meant missing out on family gatherings and cancelling plans for long-awaited trips with Jay.
You can be fine literally one second, and doubled over praying for death the next.
However, more than a year after being diagnosed, her doctor found an effective combination of medications that worked for her and she could finally leave her house with confidence.
“It gave me my life back,” said Arlene. “I can go pretty much anywhere I want.”
Instead of mapping out restrooms, she could start mapping out her next travel adventure.
Unfortunately, less than a decade after she entered remission, Jay found out his health insurance plan was changing. Instead of paying a $75 copay for a three-month supply of her medicine, they’d be responsible for copays five times that amount, $375.
Once she heard the devastating news, Arlene immediately started searching for alternatives. She worked with her doctors and searched online. If a program or service existed, she contacted them. They knew they had to find assistance, because their budget just couldn’t afford the increased out-of-pocket expense.
“I knew our financial situation and I knew it was not going to work,” said Arlene. “My husband and I live month–to-month, social security and retirement to social security and retirement. Our budget simply could not afford that kind of a jump.”
She tried everything, but by January 2022, she still hadn’t found any assistance. There were several times when she made the hard choice to stop taking her medication, simply because she couldn’t afford it. Without her medication, she lost all her newfound independence.
Fortunately, Arlene was soon put in touch with the PAN Foundation, and she worked with her doctor’s office to submit an application to PAN’s charitable assistance program for a copay grant. Once she was approved for her grant, she immediately started taking her medication again and road-tripped down to the Carolinas to visit loved ones. She felt like she had her life, and her freedom, back.
It’s been a true relief. And now I take my medication without worrying about it, without stretching it for an extra week. Thank you, PAN Foundation. I don’t know where I’d be without you.
“Just knowing that I have my medication and I don’t have to choose between taking my medication or going to a movie, that takes a lot of pressure off us. It makes a huge difference. I can breathe again.”
Now instead of researching financial assistance, Arlene is hard at work planning for her next vacation with Jay—they’re thinking this spring.
