Rob Lowe with his mother who fought cancer.
Rob Lowe
When Alicia was diagnosed with late-stage metastatic ovarian cancer, it was
devastating. Calling it the “scariest phone call of my life,” she rushed to get
chemotherapy and had major surgery. That unfortunately was not the only difficulty.
Within the next four years she had several recurrences.
But at the time of the third recurrence, she found out that there was a clinical trial that focused on treatment specifically for her type of ovarian cancer. Being a part of this trial enabled her, she feels, to have “more eyes on me,” and she felt like she had a new lease on life. She soon was able to get back to her life with friends, family as well as working out and has increased her survival by years.
Clinical trials in oncology can offer many benefits especially in late-stage cancer or
cancer types that may have an untoward prognosis with standard therapy. Surprisingly though, only 7-8% of qualified oncology patients in the U.S. typically enroll in clinical treatment trials. But if offered a clinical trial by their physician, 50-58% of patients will agree to participate.
I recently had an opportunity to speak to Rob Lowe, a Hollywood actor, author and
podcast host who has been personally affected by cancer in his family. He has spoken frequently about the hope and impact that a trial can bring as a caregiver.
Lowe’s dad, grandma and mother were all diagnosed with cancer. He states that his advocacy in this area is a “way to honor my grandma.”
When his grandmother, Mim’ was diagnosed with cancer, the standard of care was a double mastectomy. She had two recurrences and was told by the doctor to “get her affairs in order,” but Rob felt that she was given a second chance when she entered two clinical trials that led to successful outcomes. In his words, the clinical trials “completely revolutionized her cancer journey.”
As an advocate, and spokesperson for Eli Lilly, he hopes that other patients will have more awareness of clinical trials and options available for him.
Dr Shikha Jain, an associate professor and oncologist at the University of Illinois
Cancer Center gave her thoughts below:
Absolutely, and it is one of the most significant equity gaps in oncology right now. Most clinical trials are only offered at major academic centers. These trials require regular visits, sometimes as often as weekly or more. For individuals who live far away that may not have the resources to get back and forth to visits, it is
simply not feasible to participate in an urban cancer center.
Patients in rural areas are often underrepresented in the trials that shape the standard of care they eventually receive.
To address these problems there are several multipronged solutions. First, decentralized clinical trials, where labs, imaging, and even some visits happen closer to home. This would be a game-changer. Second, we need to meet patients where they are with awareness. Their community oncologist, their primary care doctor, their local hospital, those are the touchpoints that matter. If those clinicians do not know what trials are available or how to refer, the conversation never even starts. Third, we have to remove the logistical barriers. Transportation assistance, lodging stipends, telehealth check-ins should not be luxuries. They can be the difference between participation and exclusion. And fourth, education on the benefit of clinical trials. There is a lot of misinformation and misunderstanding on what clinical trials are.
I always tell my patients: clinical trials are not a last resort, and they are not a miracle, but they are an option, to get treatments and therapies
that they may not otherwise have access to. The most important thing to know is that you may experience side effects that are still being understood. With standard
treatments, we know the side effect profile well. With investigation agents, we are still learning. That does not mean it is more dangerous — it means it requires more
monitoring, more communication, and a team you trust. Patients also need to
understand that they could be randomized to a control arm — meaning they might
receive the standard treatment rather than the experimental one. That surprises people sometimes.
A case that stays with me is a patient who withdrew after her family convinced her she was being experimented on. She had enrolled with confidence, but her support system had not been able to come with her to the appointment. Misconceptions about clinical trials, that patients receive placebos, that they are being used as test subjects, can be deeply held and often do not resolve in a single conversation. What that tells us is that informed consent is necessary but not sufficient. We must deliberately bring patient support systems into these discussions from the beginning. Because when doubt arrives from the outside, and it often does, we need a foundation of understanding already in place. Not just with the patient, but with the people who influence them most and support them along the way.
There are several, and they can be persistent. The most common one I hear is 'Clinical trials are for when you have run out of options". That could not be more wrong. Some of the most impactful trials happen earlier in the disease course, and waiting until someone is in crisis limits what we can offer. People also hear and think trials are experimentation, unprotected, unmonitored, and risky. The reality is that clinical trials have some of the most rigorous safety oversight in all of medicine, from IRB review to data safety monitoring boards, and regular stopping rules if harm is detected.
One myth that is particularly important in communities of color and founded on historical truths, “Medical research has harmed people who look like me, so why would I trust it now?" (Unfortunately) this is based on history. Tuskegee happened. Henrietta Lacks happened. The distrust is earned, and we cannot dismiss it. What we can do is acknowledge it, build genuine community partnerships and trust, and show up consistently, not just when we need enrollees.
And finally: My insurance won’t cover it. For many trials, the costs of care are
still covered. That is worth a real conversation with the care team and a patient navigator before anyone makes that assumption.
I often tell my patients a clinical trial may actually be your best option, as it allows you access some therapies or combinations of therapies that may not otherwise be
available at the time.
Technology is going to help, and it is already changing what is possible. I think we
are going to see a lot more transformative change over the next few years. Genotyping has fundamentally shifted how we design clinical trials. We are no longer treating cancer as one disease. We can treat cancers with KRAS-mutations, MSI-high disease, HER2-amplified disease. That precision means we can match patients to trials and therapies where they have the highest likelihood of benefit. Basket trials and umbrella trials are a direct result of this genomic thinking and allow us to really think about how we can target certain cancers with certain markers and composition.
Precision oncology is truly possible when delivering care with the resources we have currently, and our ability to personalize medical care even further.
AI adds another layer. It can help us identify eligible patients who might otherwise be missed. A patient whose chart shows all the right criteria, but whose oncologist is not aware of a relevant trial. It can help analyze patterns in real-time safety data. And as we move toward the possibility of decentralized trials, AI-powered remote monitoring could let us track patient-reported outcomes and early toxicity signals between clinic visits.
The caveat could be that AI is only as good as the data it is trained on. If data does not include diverse populations, we risk encoding existing disparities into our future research.
Caregivers are the invisible workforce of oncology, and we do not serve them or support them nearly well enough. From that first visit when a patient receives the information they have been diagnosed with cancer, everything centers on them, appropriately so. But the person driving them to appointments, managing their medications, helping them with their side effects at home, supporting them emotionally, absorbing their fear and their pain, and often doing all of this while maintaining a job and a household, they are in crisis too. And they rarely feel like they have permission to say so. Better support starts with acknowledging caregivers as part of the care team, not just as a logistics resource. Asking them how they are doing, if they are eating and sleeping, if they can take any time for themselves. Offer them their own touchpoints with social work, with palliative care, with mental health resources. We must normalize caregiver burnout as a clinical issue, not as a personal failing. And we must allow caregivers the space and
resources to express their struggles, challenges, and frustrations.
I tell many of my patients’ caregivers that they cannot pour from an empty cup. They must take care of themselves if they want to be able to take care of most effectively their loved one.
We need caregiver leave policies, respite care, and financial navigation that explicitly includes caregivers, not as afterthoughts, but as recognized members of the care team. The financial toxicity of cancer hits the whole household, not just the patient.
Jake Van Naarden, Executive Vice President; President of Lilly Oncology, Eli Lilly and Company , concurred with Dr Jain. “Clinical trials should be considered from the very beginning of your cancer journey, not just as a last resort when other treatments have failed. For those who have been recently diagnosed, ..ask your doctor about clinical trials as early as possible.’ He added some other thoughts as well-“patients who participate in cancer clinical trials often receive exceptional care and personalized attention that goes beyond what you (may) receive… bringing increased focus to your care.”
If you are a patient or caregiver, here are some additional resources that may be
helpful.
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