Enrollment Mishap Emboldens Patient To Advocate For Minority Participation
A conversation with Tony Newberne, patient advocate for the PAN Foundation
Tony Newberne’s experience enrolling in a clinical trial to help treat multiple myeloma didn’t go as planned after a change to his treatment plan prevented him from meeting the trial’s inclusion criteria. Despite being turned away, Newberne has decided not to walk away from clinical trial opportunities (for himself or others) and has since used his experience to fuel his advocacy for it.
In this series on underserved patient enrollment, we met Amy Niles, the chief mission officer of the PAN Foundation, and here we hear from Tony about his challenges enrolling in a clinical trial as well as his success in becoming an ardent patient advocate. Later, we’ll meet Bill, who, unlike Tony, successfully enrolled in a clinical trial and now uses his experience to uplift and encourage others to do the same.
Take me back to the point in time when you first learned about a clinical trial as an option.
On September 18, 2013, at the age of 39, I was given my diagnosis of high-risk multiple myeloma and told that I had a 50% chance of making it to 40. I had blood transfusions, anemia, renal failure, multiple lumbar fractures, and two back procedures. I had severe pain all over. I had a kidney transplant and only had a 30% to 40% chance of making it home from the hospital. And, I spent two weeks in a rehabilitation hospital to regain my strength and learn to walk again. In 2013 when I was really sick, my oncologist said he would love for me to be involved in this clinical trial. But unfortunately, I was denied because I had taken too much dexamethasone and was bumped out of that clinical trial.
What enabled you to get healthy to this point, if not the clinical trial?
I'm a personal trainer and a dietary manager, so I was pretty healthy when I was about 25. That's when I dived into my health. I remember when my grandmother, who was very instrumental in my life, passed away. When she died of diabetes and my grandfather died of kidney disease, something hit me. It just allowed me to focus on taking care of myself because I didn't want to be a statistic within my community. So, I joined a gym, started eating healthy, and once I was diagnosed, doubled down and eventually decided on a plant-based diet. I wanted to do everything that I could to get myself healthy and to have a great outcome.
I started my first rounds of chemo treatments in 2013. That's when I wasn't able to get into the clinical trial. I have been on continuous treatment since 2013 because I am high-risk. Although I did have a transplant, I don't have the luxury of not being on treatment. A clinical trial or other alternatives are ideal for me so that I can have what they call a drug holiday. I haven't had that yet, but I'm very optimistic that I will one day.
When your doctor told you about the clinical trial, how much education did he give you about clinical trials in general and specifically about the one he was trying to get you into?
I was well-informed and extremely confident. My oncologist, Dr. Peter Vorhees, is absolutely exceptional. He's very supportive, very attentive, and knowledgeable, and he really helped me gain that knowledge. And he told me about a monumental Phase 3 trial and how he would love to get me in this trial because I’ve already had three different forms of treatment.
But once I started to relapse, instead of being on treatment for 14 days on and 14 days off, he recommended I go to 21 days on and seven days off. Because he made that slight little tweak, that bumped me out of that Phase 3 trial, which he was very upset about, as was I.
Did you just let that circumstance be, or did you commit to finding something else?
The first time was about 10 years ago, and the latest one was the Phase 3 clinical trial, which was in 2023. I'm always optimistic and want to be a part of the cure with clinical trials; I'm available and I want to do it, but I just seem to always be denied and not selected. But again, my oncologist is an incredible advocate for me, and I'm certainly an advocate for myself.
How then did the PAN Foundation come into the mix? Where did you learn about them and how did you become involved?
I became involved with them through their action summit in Washington, D.C., in 2023. I saw how dedicated they were to accelerating access to treatments for those who need them most and empowering patients on their healthcare journey, whether through financial assistance, advocacy efforts, or education initiatives. And when I met them for the first time, I felt like family right away. I've never been a part of an organization like PAN that is so patient-driven and focused.
Do you remember the moment that you found out about this conference or this event that they held?
I volunteer and advocate through multiple organizations, and I was doing some research when The PAN Foundation popped up because they were offering stipends for people to fly out and be a part of the summit. Reading about their organization and them breaking down the barriers people face when seeking affordable equitable healthcare, including clinical trials, I knew I needed to be a part of this organization, and I absolutely love it.
Aside from attending that event and participating in a recent PAN marketing video, do you have any other active roles within the foundation?
I do. I'm a part of their patient family advocacy board. I speak at events whenever they need me. It's just very important to be available and a part of a foundation that has your back. It has been life-changing for me to have a foundation that just gets you, they see you, and they're there for you.
What would you like pharmaceutical companies to understand about you or patients trying to get into clinical trials?
I feel clinical research is absolutely fundamental to how we advance approaches to the care of patients today. And if patients who look like me aren't a part of clinical trials, my care is overlooked. With me being Black and a part of the LGBTQIA+ community, the lack of representation may lead to a lack of access to effective medical interventions. Approval and indications for new therapies are often restricted to the demographics of the populations included in clinical trials. I want to say to the pharmaceutical companies that the lack of representation may impede my access to a specific therapy.
As for minority cohorts, do you think it's important that you are representing those communities to try to drive that change?
Yes, absolutely. When my community sees someone who looks like them and who represents them, they feel like they can see themselves through me as I can see myself through someone else. So, we must do that to break down those barriers people face when seeking clinical trials or equitable and affordable healthcare. It becomes relatable. And I do this because the PAN Foundation is so committed to working with underrepresented communities to address these concerns and find solutions to build trust and encourage participation.
What then do you think is the best way to get in touch with the LBGTQIA+ community and with the Black community?
Whenever I go to a conference or a leadership summit, I don't see a lot of people in the room who look like me. I see very few, and I always ask myself, especially with my specific disease, multiple myeloma, “If we are affected two to three times more than any other race, where are we? Why aren't we here?”
It is now up to me to lend my voice to make those changes and be a leader in these conversations and be given a seat at the table. I can sound that bullhorn a little louder to get us involved in these rooms, to have these conversations, and to make others feel comfortable to share their story. Because if you don't share your story and be a part of these conversations, those changes aren’t going to happen as we need them to.
It sounds like you looked around the room and when you did not see people who represented the things that you represent, you took the lead and said, “Well, I'll be that person, then.”
Yes, no question about it. That motivated me a lot because I felt like there was no one there, and I was like, “OK, I'm going to have to take the lead on this.” And I'm willing to take the lead on it, to educate, involve, and stand by the community and let them know that if they can't be there and represent themselves, I'll be that person to stand up and do that for them.
About the Expert:
Tony Newberne is a 10+ year survivor of high-risk myeloma and is on continuous treatment regimens. He is a certified personal trainer, dietary manager, and patient advocate for several leading national nonprofit organizations, including the PAN Foundation. In his limited spare time, Tony enjoys spending quality time with his partner, working in his vegetable garden, and watching a good Netflix series.