Bill Allen: advocating for his health and serving his community

Bill Allen grew up in historic Bardstown, Kentucky, and spent much of his adult life living in Richmond, Virginia. In 2015, he and his wife of nearly 50 years, Joline, moved to a retirement community in southern Maryland to be closer to family, especially his grandkids. 

Moving to a new area didn’t stop Bill from quickly putting down roots and becoming an active member of his community. He often spends his time volunteering as a reader in his grandchild’s class and tending to local community (educational demonstration) gardens as a master gardener.   

For Bill, the time he spends in his community and with the people he loves is extra time he didn’t expect to receive. In 2004, he was diagnosed with “rather aggressive” prostate cancer. His doctor initially recommended a “wait and see approach,” with prostate specific antigen (PSA) tests run every few months—until 2006 when Bill decided to undergo surgery and remove the cancerous cells outright.

Only four years later, in 2010, one of his routine PSA tests detected cancer in the prostate area and Bill found himself back in the hospital once again. Over the course of several months, Bill went through 36 rounds of radiation treatment and, two years later, he began an additional six-month regimen of hormone medication. Besides the endless medications, he also needed bone scans every six-months and received a white blood cell transfusion as a treatment, not a cure, for his cancer.

It was scary. No one quite understands cancer in all of its variants. We call it the ‘c-word,’ but it really feels like your life is going to take a tremendous change.

Throughout this time, Bill also had to face his rising treatment expenses. The out-of-pocket cost of one of his medications was especially high because it wasn’t the one typically prescribed. Initially, his doctor recommended a drug that hadn’t been studied in a diverse trial with many African American participants. Hearing that, Bill knew he’d feel safer taking a different medication—one that was tested on a diverse population and one that had fewer side effects. Working with his doctor, they explored and identified another appropriate treatment. Unfortunately, it also came with a much higher price tag. The initial cost was a staggering $12,000 per month. After Medicare covered most of the cost, he’d still end up owing about $2,000 each month for that one medication alone. 

“I want to live to die, not die to live…spending all my money was not a good way to live my life,” said Bill. 

I didn’t want to tell [our sons] about my initial diagnosis until I understood the disease and could dispel their concerns. But I learned it’s important that as African American men, they start getting prostate exams on an annual basis.

Being on a fixed income meant he had to make a difficult choice between a medication he didn’t fully trust and a new one he preferred but could deplete his life savings. 

Before making that critical decision, Bill and his family searched for other options online. In his search, he came across PAN’s website and eagerly sent the prostate cancer fund information to his doctor’s office. They helped him with the application process, and he quickly heard back that he’d been approved for assistance.  

The money that would come out of my pocket, [PAN] picks up. And that’s been a tremendous help, both mentally and physically since the drug is working so well.

With the assistance of his PAN grant, Bill’s decision was easily narrowed down to one option: continue treatment with a medication he trusts.  

While he’s still living with prostate cancer and experiencing some minor side effects of the new medication, his PSA level is barely detectable, and he continues to do activities that bring him joy. Playing golf, planning outings for the residents of his 55+ adult community, and visiting his alma mater, Xavier University of Louisiana, for his 50th class reunion are all at the top of his list. Given the financial support he receives from PAN through his grant, he’s able to afford these activities that help enrich his life and overall well-being. 

“It’s been close to 18 years that I’ve been living with cancer,” said Bill. “Thankfully, I discovered it early enough where I could make important decisions. Today, I’m still functioning, I can put my feet on the floor every day and go about my business without any problems.”