Tony Newberne, High-Risk Myeloma Survival & Clinical Trials

Author(s): Scott Douglas Jacobsen

Publication (Outlet/Website): The Good Men Project

Publication Date (yyyy/mm/dd): 2024/11/23

Tony Newberne, a 10+ year survivor of high-risk myeloma, remains on continuous treatment. He is a certified personal trainer, dietary manager, and an active patient advocate for national nonprofits like the PAN Foundation. In his spare time, Tony enjoys quality moments with his partner and Doberman, tending to his vegetable garden, and relaxing with a good Netflix series. His resilience and advocacy work make him a dedicated supporter of health and wellness initiatives. Newberne discussed his myeloma journey, treatment experiences, and challenges in accessing clinical trials. Despite repeated denials, Newberne remains a patient advocate for clinical trial diversity, especially for Black men and the LGBTQIA+ community. The conversation touched on barriers in the American healthcare system and the importance of clinical trial access. Newberne emphasized positivity, thriving despite challenges, and the need for more outreach to underrepresented groups. They also shared travel experiences and reflections on life.

Scott Douglas Jacobsen: Today, we’re here with Tony Newberne to discuss clinical trials, particularly the different experiences and distinctions people can have. I’ve already spoken to Amy and Bill. Bill’s response focused more on his extensive experience, dating back to 2003, with prostate cancer. Now, yourself—what has your journey been with myeloma?

Tony Newberne: My journey with myeloma started when I was 39. On September 18th, 2013, I was diagnosed with high-risk multiple myeloma. At the time of diagnosis, I was given a 30% chance of surviving my hospital stay and a 50% chance of living for one year. When I was diagnosed, I was already in complete renal failure and had four lumbar fractures at L1, L2, L3, and L4. I underwent a stem cell transplant and received multiple blood transfusions, as well as radiation therapy. After spending 2-3 weeks in the hospital, I spent an additional two weeks in a rehabilitation facility. However, I don’t let this diagnosis defeat me. I remain positive, and I consider myself a thriver with multiple myeloma.

Jacobsen: How have repeated denials from clinical trials impacted your journey in fighting cancer?

Newberne: Yes, I have faced denials for clinical trials twice. The first time was in 2013 when I was initially diagnosed as critically ill. My oncologist informed me about a clinical trial he was involved in and recommended that I participate. I wanted to be part of the cure and was optimistic. Of course, I was eager to participate. However, due to being on dexamethasone for an extended period, I had exceeded the allowable limit for prior treatment, which disqualified me from the trial.

The second denial happened more recently, after my relapse in March of this year—March 2024. My oncologist informed me of the relapse and told me about a Phase 3 clinical trial called MonumenTAL-3. He wanted me to be part of that trial. Again, I was eager to participate. As a Black male, I wanted to represent and inspire other Black men to participate in clinical trials. Unfortunately, my doctor changed my treatment regimen, moving me from 14 days on treatment with 14 days off to 21 days on treatment with seven days off. Because of this change, they considered it a new line of treatment. I was no longer eligible for the trial. Both my doctor and I were frustrated by this decision.

I remain a willing and able participant but have not had the opportunity to join a clinical trial. I share this because I see, particularly among Black men, a tendency to avoid the doctor, preferring to be outdoors or stay active at home. Even men who take their health more seriously sometimes hold back. 20% of men admit they haven’t always been honest with their doctors, and I want to help change that.

Jacobsen: What are some of the systemic barriers in this context? Members of the LGBTQIA+ community and the African American community face unique challenges. When men from these communities consider participating in clinical trials or even going to the doctor, what barriers—especially psychological ones—consistently arise, as you alluded to earlier?

Newberne: Yes. Before we discuss this topic, I’d like to mention the PAN Foundation, a nonprofit organization with over 20 years of experience advocating for equitable access to health care through financial assistance, advocacy, education, and more. They are deeply committed, as am I, to accelerating everyone’s access to treatment. When I say everyone, I mean all people.

This commitment to health equity includes increasing participation and diversity in clinical trials. The lack of diversity in clinical trials poses a significant barrier to optimizing future medical advances for all. PAN provides clinical trial information to help people understand the underrepresentation of certain populations. This includes people of color, myself included as a Black gay man. Other marginalized communities also show strong interest and positive perceptions about clinical trials.

However, these populations—myself included—are not being asked or provided with the necessary information to participate. These communities are not hard to reach, we’re hardly reached. PAN wants to change that, and so do I, by ensuring we receive the information we need to make informed decisions about clinical trial participation.

As a Black, gay male, I want to play my part in clinical trials while also not being subjected to discrimination or barriers to access, as I have experienced multiple times, unfortunately.

Jacobsen: Bill mentioned in an earlier interview today—and maybe it was Amy as well—that when it comes to getting more people from underrepresented groups involved in clinical trials, it’s not about a lack of interest. It’s as simple as reaching out to those communities more effectively. It’s basically about making contact. On one hand, many people don’t know about clinical trials or how to access them. On the other hand, those running the trials aren’t doing enough outreach. That seems to be the issue.

Newberne: Absolutely. They are not doing enough outreach. Even in rural areas—and I live in a big city, a metropolitan area—despite that, Black men and other minorities often hesitate when it comes to health care. Men, in general, tend to participate in clinical trials more than women and often have more positive views about them.

When we talk about LGBTQIA+ men, we tend to be more knowledgeable and have more positive perceptions about clinical trials than LGBTQIA+ women. According to PAN’s research, Black men, although historically underrepresented in clinical trials, had more knowledge and better perceptions of clinical trials than white men. The survey showed that Black men had a higher perception and awareness of clinical trials than white men.

Jacobsen: Certain groups generally have a friendlier perception of clinical trials. So even though there’s a high level of trust in clinical trials, why aren’t more people from the general public reaching out to say, “I’m so-and-so, and I’m interested because I have XYZ condition, ranging from a severity of 0 to 10”?

Newberne: Yes, patients often enlist and trust their doctors. I’ll speak for myself here—I trust my doctors and talk to them about this. We need them to advocate for us with clinical trials. Sure, I can reach out to pharmaceutical companies or send an email. Still, I don’t feel like they’ll take us seriously unless it comes from someone with a PhD or a physician or psychiatrist—someone they see as important.

They don’t view us or me as important because I’m just a regular patient. I also believe that if pharmaceutical companies or clinical trial developers could eliminate the term “clinical trial” and replace it with something else—I don’t know what exactly—they’d see many more people willing to participate. More people would say, “I’m available, I’m here, pick me.”

I want to do it. I want to help change the lives of other patients. I want to get more of our people involved. We want to be part of the process. We want to be part of the cure. I’m that guy. I want to do that. Unfortunately, I continue not to have that opportunity.

Jacobsen: I’m reminded of the ethic of caring for others—like how people give blood or participate in clinical trials, regardless of the name. It’s the same idea of giving back in different contexts, whether donating blood or participating in clinical trials, even if we change the name. If you could come up with a different name for “clinical trials,” what would you call it”?

Newberne: “Open Doors Trial.” I was thinking of something like an open-door policy or something less clinical and less focused on the idea of a study. It needs to be something more relatable, something patients can connect to. Maybe something like “treatment access” or “treatment trial.” When people hear “clinical trial,” it almost feels like they’re being used as guinea pigs, especially because of the history of the Tuskegee trials from back in the day.

Jacobsen: That idea of focusing on the feel of the phrasing is important. Words that reflect what they are—like “tow truck” or “ashcan “—feel gritty, like the thing itself.

Newberne: Yes, exactly. 

Jacobsen: That’s a marketing and messaging issue, for sure. It’s about the language. So, putting public relations aside, let’s focus on that “Open Doors to Clinical Trials” initiative you mentioned, what can you tell me about that particular initiative from the PAN Foundation? How might that initiative have changed your experience if it had been in place earlier?

Newberne: So, with PAN launching the Open Doors to Clinical Trials initiative, offering an easy-to-navigate platform, a digital trial finder tool, and 1-on-1 support with experts who can help navigate the complexities of trials and identity barriers, they’ve transformed access through their website. I encourage people to visit clinicaltrials.panfoundation.org to learn more about clinical trials, search for trials in their area, and get1-on-1 support.. They’re doing tremendous work.

The PAN Foundation is truly exceptional. I’ve been involved with a few foundations. Still, when I first connected with PAN in 2023 for advocacy work on Capitol Hill, it felt like family. They were open, honest, accepting, loving, caring, and patient-driven. It exceeded all my expectations. I’ll do anything for the PAN Foundation.

Jacobsen: The American health care system differs from the Canadian system. I’m calling from Canada. There are broader challenges within the American system. How do those general issues—like drug costs and access to care—impact clinical trial access, especially for historically underrepresented populations? How do those challenges stack on top of existing barriers?

Newberne: First and foremost, funding is a huge issue. It’s expensive. Drug costs, access to care, and people having to decide, “Do I pay for this life-saving treatment? Do I cover my co-pays? Do I get an MRI? Or do I pay my mortgage? Keep the lights on this month? Buy groceries?” It’s so disheartening. The debt people can go into because of treatments is staggering. These treatments can be life-saving, but people must choose between bettering their health or avoiding financial ruin.

Getting into a clinical trial can be a game changer because you need to pay out of pocket or deal with co-pays for that trial. It could save your life, help improve your quality of life, and you won’t be burdened with medical debt. If you’re not in a trial, you’re paying for treatments, and those costs could put you into debt. 

Jacobsen: Medical debt is the number one reason for bankruptcy in the United States. 

Newberne: That’s why more people should be aware of organizations like PAN that can provide financial assistance and critical education on healthcare access.  

Jacobsen: So, do you have any final points, words, or calls to action for people based on our conversation today?

Newberne: My final point is to stay positive. Live life to the fullest, regardless of the health challenges you may be facing. Smile, and be there for your family and friends who love and support you. Allow them to be a part of your life to help make it better in any way they can. Don’t just survive—thrive. Be good to yourself. If your mental health is struggling, get help. Be kind to yourself because I don’t think we talk about mental health enough.

Jacobsen: Excellent. Tony, thank you so much for the opportunity and your time today.

Newberne: Thank you so much, Scott. It was such a pleasure meeting you.

Jacobsen: Likewise. Bye, Tony.

The PAN Foundation’s recent survey, conducted in collaboration with The Harris Poll, reveals a strong interest in clinical trials among underrepresented communities, including people of color and LGBTQIA+ individuals. The data highlights that while 83% of people of color and 86% of LGBTQIA+ respondents view clinical trials positively, a significant gap exists in participation rates. A major barrier is that many have never been invited to participate, despite showing interest. The survey also found that most people trust their healthcare providers, but only 22% of people of color and 20% of LGBTQIA+ individuals have had discussions with their doctors about clinical trial opportunities.

In response to these findings, the PAN Foundation has launched the Opening Doors to Clinical Trials initiative, designed to increase diversity and participation in clinical trials. This initiative offers resources like the ComPANion Access Navigators, who provide personalized support, and an online trial finder to help individuals navigate the process. By addressing barriers such as medical mistrust and logistical challenges, the PAN Foundation aims to create a more inclusive environment for clinical research, ensuring underrepresented populations have the opportunity to participate and contribute to advancements in healthcare.

For anyone ready to take the next step in learning more about clinical trials and how to get involved, visit the PAN Foundation’s Opening Doors to Clinical Trials initiative at clinicaltrials.panfoundation.org.

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