Patient Weighs Altruism, Self-Preservation, And Historical Mistrust In Decision To Enroll In Trial
A conversation with Bill Allen, patient advocate for the PAN Foundation
The decision to enroll in a clinical trial is a complex one, regardless of the decision maker. But for some, the choice to participate in clinical research is more fraught than others; it’s a decision that’s inextricably tied to cultural and socioeconomic factors and has the potential to influence others beyond its initial scope.
This is the experience of Bill Allen, a Black man who in 2008 had to quickly decide whether to enroll in a clinical trial that had the chance to mitigate the side effects of the radiation he endured as part of his prostate cancer treatment.
In this series on underserved patient enrollment, we met Amy Niles, the chief mission officer of the PAN Foundation, and Tony Newberne, an ardent patient advocate for Black and LGBTQIA+ communities. Now, we hear from Bill, who chose to enroll in a clinical trial for himself and the Black community and now uses his experience to uplift and encourage others to do the same.
Clinical Leader: Where did your clinical trial journey start?
Bill Allen: In 2008, my PSA [prostate-specific antigen] started to go up, so I needed to consider radiation, and that's when the clinical trial opportunity came. I was set up to take 36 treatments of radiation and the clinical trial was for a drug that might mitigate injury to the rectal area.
I was looking forward to it; it's the first time I've ever been in a trial. During that process, I learned that this particular disease affects a lot of Black men. Having to make that decision as a Black man and treat myself at the same time, I asked myself, “What more can I do if this opportunity presents itself?”
It was a hard decision, but It's hard to decide on doing something that has other effects. But in the long run, I thought, “Let me do it. Let me see if it could be a positive outcome, not only for me but for a lot of people.”
Luckily, I didn't have any injury to the rectal area during the trial. However, I was still working and still had to travel. I just felt like I was getting fatigued really easily and had headaches. In 2015, I had a hip replacement, and my arthritis would aggravate the side effects a little bit, too. I decided I did to not want to continue taking take the pilltrial drug any longer. I let my trial team know and eEverybody was very accommodating. I didn't feel pressured. They took me off but they still wanted me to come in so they could monitor me.
Was it ultimately feeling fatigue and headaches that you just said, “This is enough”?
Luckily, I didn't have to travel to the clinical trial center. It was right there in Richmond, Virginia, which made it pretty easy. I could still drive, I could still do my job, but I felt like that drug was causing me some feelings that I just didn't feel comfortable with.
Whenever you first learned about the trial, who told you about it?
I was seeing a urologist at the Massey Cancer Center. This was a research opportunity at the cancer center in conjunction with Virginia Commonwealth University, and I guess my being an African-American patient allowed them to look at me as a candidate.
And what did you think about it?
I attended an HBCU in New Orleans, Louisiana — Xavier University, well known for its medical programs. I got a degree in sociology and political science, but you learn the history of our people in American history classes. So, I was aware of the Tuskegee situation. And I was born in 1950 at home, and doctors during that time would come to your house, because you couldn't go to their offices. We were still segregated until 1964, 1965. When I started at the public high school in 1965 as a freshman, that was the first year of integration for that particular high school. Integration and segregation are still part of my history. It's not that long ago. Sometimes people think of those events as being hundreds of years ago.
What went through your mind when you were deciding? Was all that knowledge and experience coming to the forefront?
It does. You do think about that, and the only person that I felt comfortable talking about that with was my spouse. At the time, I didn't know of any other men who had cancer. I didn't know of any other Black person who had been involved in a clinical trial.
The way I handle my life is that I'm always one to give of myself. I volunteer a lot. I like helping people. My job allowed me to provide opportunities for African-American business owners So, I was on my own personal journey or calling to help others. And after reading through the information that I got, looking at my disease and the way it affects men in my community, I had a better awareness of how I could help. And that was what led me to make that decision.
Then again, you have to trust people. And I had already started my treatments with my urologist. I liked him. I liked his demeanor. I felt comfortable with the care that I was getting from the nurses and the doctor. Part of decision-making in our world is being able to trust other people who don't look like you — or people who do look like you. And that's another decision you make. I felt like I could trust the information I was getting. I could trust the people that I was coming into contact with.
What is your involvement with the PAN Foundation, and do you still advocate for clinical trials?
Today, I am a member of the Patient and Family Advisory Council with the PAN Foundation. I'm one of their grant recipients as well; I'm currently on a drug that costs about $15,000 a month. Last year, with the help of my urologist, I applied for a PAN grant to cover the cost not covered by Medicare. You don't plan for this kind of cost in your retirement; you only have so many dollars that are available. Getting a grant from the PAN Foundation covered the balance of my medical costs, and I was thankful for that.
What is your role in the PAN Foundation’s Access Council?
When they're providing information to the public or patients, I have an opportunity to review PAN’s website designs and social media. Our panels are made up of a variety of people, so we cross all the segments of the American population. It's a good way for PAN to look at things and get various perspectives.
Recently, I had the opportunity to participate in PAN Summit 2024 in Washington, D.C. We went to Capitol Hill to advocate for the passage of legislation that will affect healthcare around the country. I also attended a conference with PAN as a panelist last year in Philadelphia. We talked to people who work within the drug industry about our disease and the cost, the effects, and the access.That was a good opportunity that PAN allowed me to be a part of and to tell my story and share my journey.
About the Expert:
Bill Allen, a native of Bardstown, Kentucky, now calls southern Maryland home, where he lives near family and is an active community member. Despite an aggressive prostate cancer diagnosis in 2004, Bill has navigated multiple treatments, including surgery, radiation, and costly medications. A retired insurance professional, he channels his resilience into his passions: volunteering as a classroom reader, tending community gardens as a master gardener, and organizing events at his retirement community.
When treatment costs threatened his financial security, Bill found relief through a grant from the PAN Foundation, enabling him to afford trusted, effective medication. This support has allowed him to continue enjoying an active life, from golfing to reconnecting with his alma mater, Xavier University of Louisiana. Nearly two decades after his diagnosis, Bill is thriving, valuing each day, and inspiring his family and community.